tag:blogger.com,1999:blog-48612102680579467382024-02-19T14:03:10.123+11:00Genevieve's Lung Transplant JourneyGenevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-4861210268057946738.post-46134302521963876862011-08-13T20:33:00.005+10:002011-08-13T21:12:01.925+10:00Honey, where's the Flem?<strong><u>Thursday 11th</u></strong><br />
<br />
Not much sleep again.<br />
<br />
I do my physio and think I’ll lay back down again for a kip. But I have a coughing fit and I’m just panting trying to get my breath back. You see I’m used to this from the old days and I was just literally breathing it out – but my nurse looking after me came to see the other patient then saw me struggling.<br />
<br />
So there was little bit of panicking, as the nurse explained to me later, I was taking a very long time for my oxygen saturation to come back up. We found also that on most machines, my fingers weren't reading well or very truthfully. So we started using an ear probe instead. Just clip it on where your earrings go.<br />
<br />
I did another nebuliser in the meantime – and the nurse (with a few other nurses staying around in case got worse again) called my registrar. The registrar ordered another X-ray (they have amazing X-ray machines that are mobile, so when you are really sick, they can just come to you) and also my physio came to see what was happening.<br />
<br />
I worked with the physio (with a student watching) for a while, and I was desaturating whenever I coughed (after or during a neb or from doing my Bubble Pep) as my airways were closing down.<br />
One of the physios would talk me through purse lip breathing, which helps to relax the airways and open them again.<br />
<br />
I got the tears out after about 3 rounds of this – mostly from exhaustion I think!<br />
<br />
My registrar thought it best to do a bronchoscopy, to see if they could get a better understanding of what was going on in my lungs. They could do that the next day so that was good, I wanted them to find out too! I didn’t realise until later, that they were doing it on the ward, not at the Alfred Centre.<br />
<br />
On the ward, they only use light sedation, and at my 2nd last Bronch as you may remember, I was moving around and coughing a lot, so I got my marching orders to be bronched at the Alfred Centre from thereon.<br />
<br />
I was pretty unwell from my last Bronch on the ward, so I thought that was a good idea, I must have gotten pretty punched up in there, with all my coughing and moving around!!<br />
<br />
The nurse said to me they’d shift me to a single room for some more peace and rest – as it turned out, my neighbour was leaving that day, but no one else came in.<br />
<br />
A fungus had turned up in my sputum called Aspergillus. I was already familiar with this bug from my CF days. It could be causing the infection, but they still don’t know, so I get given another oral anti to take.<br />
<br />
<strong><u>Friday 12th</u></strong><br />
<br />
You have to fast from midnight for Bronchs (and most other procedures involving anaesthetic) – the food I was fine about, but gee I was thirsty. I had been drinking a lot of water each night through the nights, so obviously when you can’t have something that’s all you think about – haha!<br />
<br />
I had to resort to swirling it in my mouth and spitting it out. I think my fevers were having something to do with me wanting extra fluids during the night.<br />
<br />
I managed to get some sleep – still interrupted and not deep, but it was sleep!<br />
<br />
When it was Bronch time, I was wheel chaired down to the other end of the ward. Before the procedure, you have to inhale this revolting stuff to help numb your throat. I always try not to swallow as that is when you really taste it (Melanie, it was would so make you gag!) lol<br />
<br />
You breathe in that joy stuff for about 15 minutes.<br />
<br />
I was then wheeled in to the procedure room and hopped on a trolley - quick chat to the doc (who I knew which was nice) – and then I was put to sleep. I did tell them that the last one I had was difficult and they said no worries we can pin you down…. (chortle chortle)…<br />
<br />
I wake up with the old cliché saying of “a sea of faces” – and said, “what happened” as I realised they had a little puffer thingy (I just googled it to see what it's called and it's a Bag Valve Mask) helping me to breath. <br />
<br />
They said they had to abort as I was coughing too much and desaturating – and that they nearly needed to call the crash cart (I don’t really know what that involves but it's a resusitation thingy!)<br />
<br />
Well I told ya so - I say in my head!! Lol<br />
<br />
They only managed to see the top half of the right lung, which had gunk and give it a wash to get a sample, so hopefully they can gain something from that.<br />
<br />
Later on the docs said they would try again at the Alfred Centre on Tuesday.<br />
<br />
I didn’t feel too bad afterwards, just very woozy. In the afternoon I worked with my old CF physio (all the staff are great, but familiar faces are even better!) and I asked could I do a walk around the ward. So it was with 4 litres of oxygen but I made it round.<br />
<br />
Because of the past few bad days the night duty nurse was going to have to come in a bit during the night, to keep on eye on my saturations.<br />
<br />
I have steadily lost another 3 kgs on top of 3kgs I had already lost, so I thought I had better start eating things I don’t normally to help with the weight. So I had ice- cream and it felt very odd and naughty! I’m not really interested in food at all, so I have to really force it down. Breakfast seems to be the easiest at the moment.<br />
<br />
<strong><u>Saturday 13th</u></strong><br />
<br />
I dreamt there were three cute old ladies sitting on the bed near mine, like they were having a picnic – but very quiet. I wonder if there are ghosts here, I’ve often wondered!<br />
<br />
Anyway, I seemed to have the most sleep since arriving to the Ye Hotel Alf – as predicted I was woken a fair bit by the nurse but I didn’t feel so exhausted.<br />
<br />
My breathing felt pretty crap though, so I got on the nebuliser straight away and did some Bubble Pep. <br />
<br />
My registrar came around and I asked her about my X-rays – she said that the left lung initially when I came in had been clear, but the latest one showed shadow (infection). She said we have talked to infectious diseases and seen your X-rays and other things, and we both feel satisfied you are on the right meds and covering everything that has shown up so far.<br />
<br />
I asked is it normal for healing to be this slow and she said most definitely and particularly being immuno suppressed.<br />
<br />
My dietician also visited and we were on the same page about avoiding sugar - it's just too hard when your sick! So I told her I had had my first ice cream...lol!! <br />
<br />
After she left, I was thinking about settling for a bit of shut eye, but the w’d physio came – so I worked with her but she didn’t feel very confident with what I was doing because of my desaturating (still) with coughing – so she went off to get another more experienced physio who also works with Cfers. <br />
<br />
I’d never met him before but he was very nice, and we did some breath work.<br />
<br />
I still got pretty much nada from my lungs, but I felt more comfortable.<br />
<br />
I was to do that again this evening.<br />
<br />
My sister came during this – before she left, she helped me go for a walk around the ward (still with oxygen) and I must say I have felt brighter and stronger this afternoon. I manage a shower most days but have to sit in a chair…tee hee.<br />
<br />
A friend asked me in an email how am I doing as I haven’t mentioned much emotional stuff. In the beginning I was relieved to be having treatment, which then turned to feeling overwhelmed - I’ve been so scared at times on why I haven’t had a turn around. I asked why is this happening to me when I have done everything right – why am I suffering again. I’ve felt exhausted. Other times I’ve felt quite ok. I guess what makes me the most anxious is, when I come out of this, what will be left? Am I going to lose some lung function or will my lung function be ok? And that I'll be even more paranoid of bugs!<br />
<br />
So I’ve been meditating a lot to help deal with all this, playing relaxing music and I’m sure all my lovely friends and families prayers are helping me too.<br />
<br />
Bye for now Love Genevieve <br />
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Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com22tag:blogger.com,1999:blog-4861210268057946738.post-32221759545973026832011-08-10T22:04:00.004+10:002011-08-10T23:28:12.096+10:00How Things Can Turn To Shit OvernightHello everyone,<br />
<br />
After such a jubilant previous post, this couldn't be any more different!<br />
<br />
At my appt last month (with my brilliant LF) - the doc decided to double one of my immuno suppressants, saying my current dose was low.<br />
<br />
Within a few days I started feeling very tired, broke out in ulcers in my mouth and throat and got insomnia. A week later I developed motion sickness which finished in a vomit. 2 weeks later after starting the drug, I had begun to feel better. <br />
<br />
It was my birthday on the 23rd of July and some of my family and I went out for a meal where I have gotten taken away from many times since my transplant. Because of my insomnia I was awake when cramping started in my tummy a few hours later which led on to excruiating pain and vomiting all night.<br />
<br />
I stopped by morning but slept for most of the day. Everyone else was fine. It was becoming obvious I was too suppressed!<br />
<br />
I have had a little bit of mucus in my right bronchial tube ever since the transplant. Docs kept saying it was because of my join healing (old bronch to new lung bronchi). <br />
<br />
I knew from previous bronchoscopies, that a previous nasty bug called pseudomonas from my CF lung days, was still lurking. I believe because I had been unwell for a few weeks, it was allowing the pseudomonas present, to start having a party. Again just like in the old days.<br />
<br />
Fairly quickly my exercise tolerance was going down - I was having difficulty doing my usual<br />
cardio aerobics and coughing. One of my zumba teachers noticed and started making comments so I had to explain to her what was going on.<br />
<br />
I attempted a Body Combat class, and I felt exhausted afterwards - so I decided that long walks or gentle rides would have to be the go for a while.<br />
<br />
On Monday the 1st of August, my right bronchi had become very thick with mucus and I couldn't move it no matter what I did. So I rang the Alfred and they were able to see me.<br />
<br />
My lung function had fallen 7% - they had also discovered from a previous weeks blood test that my liver function levels had sky rocketed. So I had to withhold the med that had been causing all my side affects. I repeated the same blood tests for my liver.<br />
<br />
I was given inhaled tobra, and was pretty confident that was all I would need to get back on track.<br />
<br />
LT nurses rang me the next day to say my liver function was even worse so I had to go back in again<br />
to do more blood tests. Had to rule out hepatitis and such even though it was highly unlikely. They'd be<br />
in touch if things were worse or if they found anything.<br />
<br />
I persisted with exercising, walking each day, but was feeling very tired. My poor muscles were also crying out because of all the coughing....I was no longer fit for coughing!! HAHA!!<br />
<br />
I heard nothing from the hossy re my liver, so I took that as good news that things were improving there.<br />
<br />
With the inhaled tobra, the mucus was clearing up but I could feel the infection had spread to my other bronchi and I could feel a few crackles starting in my lungs.<br />
<br />
Saturday the 6th I woke with a temperature - I had been having sweats and chills all night and dreamed<br />
of drinking lots of water. I went to the toilet and was having trouble breathing. <br />
<br />
I rang the LT registrar and she said if I worsen, come in, or if I have another temperature overnight, to come in.<br />
<br />
I had a rather lovely day planned - firstly catching up with friends, then my sisters birthday dinner that night, so after taking some panadol decided I could soldier on. My breathing was the worst when I had a temperature.<br />
<br />
The next day, it was basically a repeat of my fevers, but my breathing was much worse. I was puffing like I used to before my transplant and my oximeter was giving some scary readings (oximeter reads the amount of oxygen in your blood). I didn't cough up much mucus.<br />
<br />
Mum and dad were down anyway, for my sister's birthday, so after I had spoken with the LT registrar again to tell her my movements, mum and I went to the emergency department.<br />
<br />
<u>EMER<strong>GEN</strong>CY EMER<strong>GEN</strong>CY</u><br />
<br />
I got seen pretty quickly because of the LT registrar contacting the department before I arrived.<br />
<br />
I've mostly ended up in a corridor because of it being so busy on previous occasions, but luckily<br />
got a room this time. I immediately felt better being on the oxygen. Once I was safely in their hands, mum drove back to my house to get dad and drove back to Bamawm, planning on coming back on the Tuesday. They also took Andy home for me. <br />
<br />
My sister Jo arrived not long after mum left, and she was wonderful making sure I had food and water - even doing her nurse duties and getting me a bed pan - haha!! Jo is a registered nurse you see, very very handy!<br />
<br />
After I'd seen a doctor, (my favourite question, which I think they have to ask each time is "are you a smoker") they got me started on IV antibiotics.<br />
<br />
I spent the night there.<br />
<br />
<strong><u>Monday 8th of August</u></strong><br />
<br />
At about 7am, I was woken because they needed the room! So I was put in the corridor. I think I'd managed about 3 hours sleep.<br />
<br />
I have earplugs and an eyemask, so I'm well and truly armed for noise and light these days.<br />
<br />
At about 11am I was moved to trusty 5 East, but in the treatment room, as no room was available as yet. I didn't have a bed yet either, I was still on a trolley so my arse was sore....hahaha!!<br />
<br />
I attempted a walk to the nearest toilet not long after I arrived and sent the nurses in a panic when I got back as I was desaturating drastically. I don't remember my numbers ever being that bad previously in the old CF lungs days!!<br />
<br />
I eventually got a bed and was much more confortable especially my bum...haha!!<br />
<br />
I saw the registrars but they didn't say much. Jo my sister came in again to spend the day with me.<br />
<br />
Dietician visited, then physio.<br />
<br />
Physio involves doing an inhaled nebuliser of saline to help break up any crap that may be in my lungs. This is followed by me blowing a tube into a large bottle of water. It is called Bubble Pep. Again this is to help assist move mucus. It also helps to open collasped airways. She could hear quite a few crackles even though I couldn't necessarily feel them. She explained that you can only really feel things in the main airways. Still so used to my CF lungs and being able to feel everything! Plus I guess some nerves may not have grown back either.<br />
<br />
The physio had asked would I mind two work experience students watching - I said as long as they don't<br />
want to ask me anything (cause I couldn't be bothered, too tired!!) and she said no, they are just here to watch.<br />
<br />
Well I was just about to start my Bubble Pep when one of the girls left and fainted!! Code Blue ploise in the corridor!! Once I knew she was fine, I joked to Jo that "I'm fine, don't worry about me"...haha!!<br />
<br />
The girl was very embarrassed poor love!!<br />
<br />
The heady honcho LT doc arrived in the late arvo. They had spotted something in my blood cultures that may indicate pneumonia but it wouldn't able to confirmed for a few weeks. (not sure how it all works).<br />
<br />
In the meantime, in case I had the flu, I was to be given tamiflu and kept in isolation. I knew it wasn't the flu as I wasn't sick enough, but it meant I got a room to myself so that was good. Hehe!!<br />
<br />
Late that night I finally reached my room and felt a lot more confortable with my own toilet and such.<br />
<br />
The remaining mucus I had was drying up very quickly from the antis.<br />
<br />
<strong><u>Tuesday 9th of August</u></strong><br />
<br />
Didn't get much sleep due to one the IV's being at 12 midnight and having another fever at about 3am.<br />
<br />
My breathing was terrible - was still an effort to just go to the loo on oxygen.<br />
<br />
The marvellous Mator arrived (Mum) and I got her to help me have a shower.<br />
<br />
My breathing seemed better in the afternoon.<br />
<br />
<strong><u>Wednesday 10th</u></strong><br />
<br />
Again not much sleep from another mild fever and an increased dose of prednisolone creating insomnia.<br />
<br />
The docs visited pretty early and said they could lower the pred so that was good as I was dreading my diabetes going out of wack again and getting a fat face!!<br />
<br />
One of my oral anti's was changed over to another intravenous antibiotic and my swabs for the flu came back negative (told yaaa). But the bad part of that was that I got shifted from my lovely single room to a shared room.<br />
<br />
I tried a short walk (on oxygen) beyond my room but on returning was desaturating, so no more walks for the day except to the toilet.<br />
<br />
Having said that, in the afternoon when I shifted I did have to walk and coped fine so it appears in the morning I am worse.<br />
<br />
Well that is it for now - <br />
<br />
Love Genevieve<br />
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Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com2tag:blogger.com,1999:blog-4861210268057946738.post-30091408231210706512011-07-08T20:43:00.000+10:002011-07-08T20:43:34.112+10:00July CheckupWas very excited at my latest checkup when my lung function shot up 11%. I'm now sitting on 91% FEV1 and FVC is now 3.92 litres. Healing can just happen that way! Some lungies shoot up straight away to their maximum FVC and Fev1 - others (like myself) just take their time!<br />
<br />
I had a gastrocopy the previous day. My tummy and oesophagus looked fine (no signs of inflammation from reflux and no ulcers!) so that is good to have that ruled out. Maybe my low iron is just random for me at the moment. Will just need to keep on eye for it and keep on the iron tablets.Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com0tag:blogger.com,1999:blog-4861210268057946738.post-68120361167585216602011-06-26T21:19:00.001+10:002011-06-26T21:20:27.192+10:00Anniversary DinnerMy anniversary has been and gone - had a fairly quiet day on the actual day, then the w'd just gone I had a special dinner with some of my family. It was also my brother in law's birthday.<br />
<br />
I had been quite emotional leading up the day, but on the actual day I was fine. :)<br />
<br />
My sister and her daughter made me a wonderful Lung Cake!! It looked and tasted wonderful!!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjR0iCCW6G3yGhV9y3v7zAoFqTClT6p0s_dJBkYQ8ZBXOHZWNMYOnnJZOzWRleJC8WflMBlE1R6Tda62-pdX3vrhpIzbgrhxu7RPmlv_rR_oEB-rh9HTCcu3MiEcaEXVYtSnP2fdGxs6DI/s1600/GenandPhil%2527sCelebrationJune2011+013.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300px" i$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhjR0iCCW6G3yGhV9y3v7zAoFqTClT6p0s_dJBkYQ8ZBXOHZWNMYOnnJZOzWRleJC8WflMBlE1R6Tda62-pdX3vrhpIzbgrhxu7RPmlv_rR_oEB-rh9HTCcu3MiEcaEXVYtSnP2fdGxs6DI/s400/GenandPhil%2527sCelebrationJune2011+013.jpg" width="400px" /></a></div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcFl_L338QRBth8g3hFWU9qOkTZaJUpy8Y-SgpEb1Omh6ZFdQeKw_K9e2DvMPmDr1-0FmZ8IacMdqdaGD3xl-qTU99MZX1LXNXqyfNs_n4a4O2qoFuYrkSFNXTiDEv5NAx-BDrgDRxoSk4/s1600/GenandPhil%2527sCelebrationJune2011+019crop.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400px" i$="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjcFl_L338QRBth8g3hFWU9qOkTZaJUpy8Y-SgpEb1Omh6ZFdQeKw_K9e2DvMPmDr1-0FmZ8IacMdqdaGD3xl-qTU99MZX1LXNXqyfNs_n4a4O2qoFuYrkSFNXTiDEv5NAx-BDrgDRxoSk4/s400/GenandPhil%2527sCelebrationJune2011+019crop.jpg" width="282px" /></a></div>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com0tag:blogger.com,1999:blog-4861210268057946738.post-76116365937458246962011-06-13T22:15:00.008+10:002011-06-13T22:54:47.907+10:00<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIb5I7ahrYYw600HExF5W7kW8CBaZV1gFhsgMywwnDdmF5SADqFAJecGdnm_A0qltqmfiB40-YBPHLBcbngGjBp07-umAeJNA5gyLwrFBVeu4AGRrnGI8bUTrSr1L6lNH1YzbyVKOqUbnr/s1600/andygen.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiIb5I7ahrYYw600HExF5W7kW8CBaZV1gFhsgMywwnDdmF5SADqFAJecGdnm_A0qltqmfiB40-YBPHLBcbngGjBp07-umAeJNA5gyLwrFBVeu4AGRrnGI8bUTrSr1L6lNH1YzbyVKOqUbnr/s400/andygen.jpg" t8="true" width="266px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"></td></tr>
</tbody></table><div class="separator" style="clear: both; text-align: center;">Andy and Gen, Bealiba HRCAV Show. Feb 2011</div><br />
<br />
<u><span style="font-family: "Trebuchet MS", sans-serif; font-size: large;">June 2011</span></u><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">Ooopsy! I had meant to be a bit more regular with my writing, but time does fly when you're having fun!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I finally wrote to my donor a few weeks ago. Until then it hadn't felt right to do so. Every time I thought to do it, something stopped me. I think it may have been some intuition, telling me it wasn't the right time for my donor family to receive it. As my anniversary approaches, I hope my letter can give my donor family some comfort. My anniversary is the 22nd of June. :)</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">It's hard to believe that it's nearly a year since my transplant. The phone call and all that ensued are still quite vivid in my head - I can even remember my thoughts at certain times. But it also seems so long ago, when I think now of the fragile woman just fighting each day to survive. </span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I just took a few slow deep breaths then. Old Gen would have taken about 8 breaths to new Gen's one breath. Even now I still have moments of "wow" and gratitude quickly following....I am still discovering things that I couldn't do or wouldn't have coped with well.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">In Australia we are now in the full swing of Winter - the days are often cold. </span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I remember horse events (early in the morning) and times out at night where I would have the worst coughing fits because of the cold air. When I rode Andy, I used to wear a scarf over my mouth to try and keep the air warm, and would also do the same after coming out of a warm venue to go home. Coughing and breathing at the same time can be a bit tricky...lol!! Those coughing fits were bloody awful. Just such a beautiful thing to be able to cope with the cold air now.</span><br />
<br />
<strong><span style="font-family: "Trebuchet MS", sans-serif;">Checkups and Bronchs.</span></strong><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">Hopefully I've had the last bronch I'll have to have in a long time!! It came back all clear, as has every one this year. :)</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I have finally been able to drop one of my medications which was causing renal disfunction, so I'm sure that my kidneys will be very happy to not have to cope with that anymore! I'm not sure how much water I could have drank to keep them happy! I had only just started a blood pressure medication too, because of this drug (which causes high blood pressure), so thankfully can drop that again too!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">Every now and again I get a bit of tummy pain, and my iron is also low, so I'm going to have a gastrocopy to check I haven't got an ulcer. Following that I will probably have to have a Ph monitor to check </span><span style="font-family: "Trebuchet MS", sans-serif;">if I do have reflux....a Ph monitor is a tube that is put through your nose and sits in your tummy, and is attached to a little machine you wear. You have to wear it for 24 hours and it will measure your acid actitivity. I have had it done before and it is very unpleasant! I was hoping that I might get out of it, but I guess it's better to check! The problem is that if you have acid reflux, the acid can spill into your lungs and create lung damage. Reflux is very common in CF - I didn't have it before but since the transplant and medications I suspect I have, and again is very common. </span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">This is from when I had one back in 2004.</span><br />
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</div><span style="font-family: "Trebuchet MS", sans-serif;">My prednisolone has finally dropped to 7 and a half and my face is nearly back to normal. Perhaps it's a bit chubbier looking now because my face has just naturally filled out to what it's supposed to look like - not gaunt anymore! Since my dose has dropped my "splints" near my knees have also stopped being sore..bonus! </span><br />
<br />
<span style="font-family: Trebuchet MS;">I still have diabetes and am taking a fair bit of insulin but I have pretty good control of it all now. </span><br />
<br />
<strong><span style="font-family: "Trebuchet MS", sans-serif;">Horseying Around</span></strong><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">Well haven't Andy and I been having fun!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">In HRCAV they have an award that when you reach 100 points in any discipline of Showjumping, Eventing, Dressage or Combined Training you get recognition and get a trophy of some sorts! In Showing it is 300 points, and that is an award Andy and I have already obtained. In each competition you do, if you are placed 1st - 4th, you get points, and these are written on a card and also the HRCAV office has a copy. So the idea is that eventually you'll gain 100 and it is a very clever thing to do...lol!!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">So Andy and I finally cracked our 100 points - you get to write an article for the HRCAV monthly magazine with a mugshot, and then later in the year HRCAV hold a dinner with presentations, so we can collect our award then. Good fun!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">With much joy, I did my first jumping event since 2004 with Andy in May. Unfortunately mum and dad were away, so they weren't able to witness it or video, but I did manage to get one photo, which is also unfortunately a bit out of focus but you get the picture..(literally)!!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">We had a fabulous day winning our dressage phase and going clear in both the show jumping and cross country phase. Andy as usual went fairly fast on the cross country, perhaps forgetting that he is the grand age of 24 and to perhaps take it easy, but no way he says, as he pulled up over the finish line!! He seemed to know when the last jump was, and slowed down to a nice trot. He knows the course better than I do I think!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I'd had to wait a long time to jump to allow my sternum cope with the impact of landing over jumps - it was no problem and my sternum is still well intact! Haha!!</span><br />
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<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNbEGYPnjspnxyOukfCEFtYbg8xkMhgGqN-CwBXZ9w-Mt7-kXyWkmIqHBb3Qhgc6GcwoIlD_qAS0AQc0n_6xt0QipXN2wBavemw_xo9Epxi_kyFI_8PPCxtddiJMyLuE9wsyPRuLdkm-zW/s1600/AndyGenKyHorseTrialsMay2011.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><span style="font-family: "Trebuchet MS", sans-serif;"><img border="0" height="467px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgNbEGYPnjspnxyOukfCEFtYbg8xkMhgGqN-CwBXZ9w-Mt7-kXyWkmIqHBb3Qhgc6GcwoIlD_qAS0AQc0n_6xt0QipXN2wBavemw_xo9Epxi_kyFI_8PPCxtddiJMyLuE9wsyPRuLdkm-zW/s640/AndyGenKyHorseTrialsMay2011.jpg" t8="true" width="640px" /></span></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-family: "Trebuchet MS", sans-serif;">Photo by Sam Feldtmann - Website - </span><a href="http://www.swfphotography.com/"><span style="font-family: "Trebuchet MS", sans-serif;">www.swfphotography.com</span></a><br />
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<span style="font-family: "Trebuchet MS", sans-serif;">Kyabram P.C Horse Trials, May 2011</span><br />
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</tbody></table><span style="font-family: "Trebuchet MS", sans-serif;"></span> <span style="font-family: "Trebuchet MS", sans-serif;">As much as I missed competing, I also missed being able to have riding lessons, so I had my first one in about 10 years recently. It was so enjoyable and am looking forward to my next one. Andy enjoys them too I think because I ride properly! Haha!</span><br />
<br />
<strong><span style="font-family: "Trebuchet MS", sans-serif;">Other Exercise</span></strong><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I had to re read my 6 month blog to remember what I had written. Apparently I was going to get fat from the ginger bread at Christmas time! Thankfully this has not been the case!!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">From the age of 15 I was an aerobics freak - I would tape "Oz Aerobics" and then do aerobics before I went to school. Sometimes I would do aerobics after school at the gym with a friend. Combined with horse riding, I was always fit. Later on in my twenties I started running as well. My logic was that this was a way to control my health and help out my lungs.</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">I never had a problem with putting on weight, (unlike most CFers!) so as well as keeping my lungs healthy I had the extra motivation of controlling my weight with exercise!! At one point my physio Brenda said I was doing too much exercise, when I said to her I'd been a bit tired. Turns out running and horse riding in the same day might have been a bit much! Derr!!</span><br />
<br />
<span style="font-family: "Trebuchet MS", sans-serif;">Well give Gen new lungs and I've basically took off where I left off - zumba, weights, running and walking (plus the horse riding)...I am loving to be able to use my body as it was meant to, and becoming fit again is just awesome! And guess what I sometimes get too tired and think hmm maybe I'm doing a bit too much (again!!). I have unfortunately not been able to get rid of my new "belly" acquired from the prednisolone, so I maybe stuck with my spare tyre. I do hope it might miraculously melt away, we shall have to see...haha!!</span><br />
<br />
<span style="font-family: Trebuchet MS;">Well there really isn't much more news - I'm just living my life and enjoying myself. I catch up with friends, do all my house work, shop, look after Andy, ride, compete on weekends, exercise, fit in many hospital appts (diabetes, lungs, liver, eyes, blood tests etc!), and I rest and sleep still a lot too! </span><br />
<br />
<span style="font-family: Trebuchet MS;">I've had a few quiet weeks with feeling unwell from my flu shot but so far I haven't caught anything too nasty.</span><br />
<br />
<span style="font-family: Trebuchet MS;">It is with much gratitude that I have my lovely strong body with it's beautiful lungs as I approach my 1st year anniversary.</span><br />
<br />
<span style="font-family: Trebuchet MS;">I hope this finds you all well. Love Genevieve</span><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiug__pYD7iSDlmCfZc_d1HiZu-dA0t5AadRsaIqvmddhyphenhyphenu3gioQwx2e6cEGdrYJZG-8LfNStRuX9AOfM_aAld2op_wLpmF4y7AClb_ROunGV_xW26fJMHaI7OXOoQjp0wtzIdOL62kciJG/s1600/new_2011JanTTTShowing+069cropped.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiug__pYD7iSDlmCfZc_d1HiZu-dA0t5AadRsaIqvmddhyphenhyphenu3gioQwx2e6cEGdrYJZG-8LfNStRuX9AOfM_aAld2op_wLpmF4y7AClb_ROunGV_xW26fJMHaI7OXOoQjp0wtzIdOL62kciJG/s400/new_2011JanTTTShowing+069cropped.jpg" t8="true" width="347px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gen and Andy @ the TTT Showing Championships. January 2011</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3gzNtX_aDpm91ByHYs1hNbQZOJ2AUAchrbgIp1n2Zj4qd8VjJ6gFgVv5ySuGCxwZ0F5sPvT4zlaUM9zAqj5_ZfYDqJCNSc-aM_eOklyGQRlQcvB7mYBl0PVElkYN0FnYstFcFUc-0Cu-3/s1600/BeachFeb3rd2011+004.jpg" imageanchor="1" style="clear: left; cssfloat: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" height="300px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi3gzNtX_aDpm91ByHYs1hNbQZOJ2AUAchrbgIp1n2Zj4qd8VjJ6gFgVv5ySuGCxwZ0F5sPvT4zlaUM9zAqj5_ZfYDqJCNSc-aM_eOklyGQRlQcvB7mYBl0PVElkYN0FnYstFcFUc-0Cu-3/s400/BeachFeb3rd2011+004.jpg" t8="true" width="400px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Andy's first ever beach outing. Feb 2011</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJrFfreP7Au__wP8K7LOhwNTkY0m8BGI6_PrI_A74S9CqO1ZQZMuvbAmrAbyFrqHrlCZbmO0uX0Yz5NNfw91Ofy381r327rY5Yaa9Mk91DI1wPApOst3ll_LoXmDjuuIKNC1DdXCEO6iDi/s1600/Jo%2527sBirthdayJune2011+004.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="283px" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjJrFfreP7Au__wP8K7LOhwNTkY0m8BGI6_PrI_A74S9CqO1ZQZMuvbAmrAbyFrqHrlCZbmO0uX0Yz5NNfw91Ofy381r327rY5Yaa9Mk91DI1wPApOst3ll_LoXmDjuuIKNC1DdXCEO6iDi/s400/Jo%2527sBirthdayJune2011+004.jpg" t8="true" width="400px" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gen with her sister's Jo and Sue, celebrating Jo's birthday. June 2011<br />
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</tbody></table>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com2tag:blogger.com,1999:blog-4861210268057946738.post-55155476118124668952011-05-05T13:50:00.001+10:002011-05-05T13:51:15.535+10:00"Every Precious Breath" - New Book by Tom ValentaTom Valenta has two grandsons with Cystic Fibrosis. He has written about them in his new book, along<br />
with other stories from family and people affected by CF. I have contributed, as well as another friend of mine, who wrote a beautiful poem when I had my lung transplant. Please support this great new book.<br />
<br />
<a href="https://www.cysticfibrosis.org.au/viewproduct.php?id=487">https://www.cysticfibrosis.org.au/viewproduct.php?id=487</a>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com0tag:blogger.com,1999:blog-4861210268057946738.post-69787255284784804422010-12-22T23:15:00.007+11:002010-12-23T09:03:39.364+11:006 Months Post LTHi everyone,<br />
<br />
6 months has gone slowly and also quickly. <br />
<br />
Looking back I can honestly say the first 4 months or so were pretty awful. <br />
<br />
On one hand you're grateful, ecstatic and joyful that the operation was a success and that the lungs are liking their new body, but the lack of sleep, pain and medication side affects make it hard going. All this while you're having to drag yourself off to gym and various medical appointments, even when you feel like crap.<br />
<br />
But has it been worth it? Of course it has. :)<br />
<br />
A turning point around the 4 and a half months mark was having a change of insulin which is working much better for me, (no more morning hypos) and made a big difference in my energy levels. I have worked very hard with my diet and have cut out most sugars. Another motivation for this was because I was getting rather too porky for my liking, which was not helped by one of the medications making me insatiably hungry all the time!! I'm at a weight I am comfortable with now though! I still have treats of course, but I am basically all normal in the digestive part as far as putting on weight goes! I do really miss those daily snickers and/or chicken twisties......lol!!<br />
<br />
I found some people rather dismissive about the unpleasant things that I had to deal with along the way - apparently as long as I was able to breathe, these other bumps were nothing of significance - in particular the diabetes. Diabetes is no walk in the park, and if not managed correctly, it can do much damage to your body. So for anyone who has never been sick before, and comes across someone who is, and YOU ASK THEM how they are, really listen to them and have some compassion for what they are going through. After all, you are the one who asked.....(on the other hand, they don't need two pages of dialogue, just a brief summary usually suffices...LMAO!! If they want more detail, they will ask...if their eyes are getting glazed, you've talked too much.....:)) <br />
<br />
I do count my blessings I did not have diabetes beforehand - many CFers do, and it makes management of their CF all the harder. <br />
<br />
For people who are waiting for a transplant and are interested in my current side affects - (and most of them are silly ones) - here you go.<br />
<br />
- my freckles on my face and neck have gone out of control! I use sunscreen religiously so I'm wondering if this is medication related...<br />
<br />
- lots of blond hair on my face - if I look like a gorilla in the next few years, don't be alarmed....<br />
<br />
- bruise easily and take a long time to fade<br />
<br />
- cramps in legs and feet<br />
<br />
- still got the shakes from the tacro but not as bad and not all the time<br />
<br />
- occasional swelling in legs and feet<br />
<br />
- sleep is heaps better but I still usually wake about once a night - sometimes I fall back asleep straight away and other times I'm awake for about an hour or so.<br />
<br />
- can't stand cold things to eat or drink. My teeth were never sensitive before the LT.<br />
<br />
- still got the pred belly, double chin and puffer fish face, but not as bad as it was<br />
<br />
- still have achy knee splints but much better than they were<br />
<br />
- don't like bright light - rarely wore sunglasses, now wear them fairly regularly<br />
<br />
- diabetes of course<br />
<br />
I still have days or weeks where I get very tired and have to sleep in the afternoons, then suddenly I have a different energy burst and don't need the arvo kips. I never deny myself sleep if I'm home, as it's just so important for your immune system and for healing. I only seem to sleep an hour and a half or so, then I literally feel all ready to go again, they are very energising!!<br />
<br />
Lung wise I am still sitting at 73% FEV1. The join in my right lung ( left as you look at me) is being a bit of a pain and is taking time to heal. It narrows when I laugh so I usually end up coughing! Minus flem of course, haha!!<br />
<br />
I do have about one bit of flem that sits at the join and which I get up each day. So I'm still on meds for that too. Hopefully it will clear up one day!<br />
<br />
We are still juggling the immuno suppressant medications in order to help my kidneys which are still not liking the tacro much.<br />
<br />
<strong><u>Horseying Around</u></strong><br />
<br />
November 28th marked the exciting occasion of my first show. My last one was around September, 2008. <br />
<br />
It was really wonderful to be able to bounce out of bed straight away, have some brecky and head off. Usually by the time I got into the car, I was already worn out and ready to go back to bed!!<br />
<br />
Mum was rather concerned at me hitching and unhitching the float with my sternum but it all went fine. I did manage to get the float bogged as well, but like the legend that I am, I got it out too -hahaha! It's time for me to start entering 4 wheel drive raffle competitions I think though!!<br />
<br />
The following w'd, I had a 3 day horse show, for Andy's breed. It's the Victorian All Welsh Show, and Andy is a Partbred Welsh. His daddy is a Welshie, and his mum was a Thoroughbred.<br />
<br />
I had a friend ride Andy in the first event, as it involved jumping and I'm not allowed to jump for another 6 months. I then returned the next day for a ridden class. Unfortunately that week and weekend had been very humid and hot - and I was already feeling the effects in the ridden class. I felt dizzy at times and the sweat was pouring out of me!! As it was Andy!! Even getting ready each day was a hot affair.<br />
<br />
When we went home after that event, I said to mum I don't think I can come again tomorrow, I'm worn out<br />
from the heat!! Even though I had drunk so much fluid, I had really bad cramps that night, and the next day did not feel well. I slept for most of the day. I felt better Monday but still not quite right, but by Tuesday I was all good again.<br />
<br />
Unfortunately the day I couldn't go, there was a presentation to be made to me after my class from the President, in recognition of the transplant and me being able to ride Andy again. It was a lovely gesture, and a real pity the weather was being such a pain!! One of the UK judges had to be hospitalised for dehydration, so I was not the only one affected by the heat.<br />
<br />
My heat tolerance was dreadful before, I would avoid it like the plague. I am certainly much better now, but there is obviously still a bit of a limit to what I can handle!<br />
<br />
I have many more horse events to come, and each time I know I will be marvelling at the ease of my breath, and the lack of coughing. It still hits me daily of the miracle that happened to me on the 22nd of June, and how my life has changed so quickly and that I am a happy girl again. <br />
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgmavBN1C1yM4BRG9dBxixoq8V_fRbIVWbmz1ZcGwS4LXYauEUflYrl0ROQVIYEHS4ztoQoRISInNhLFOu_ViSOoZM_1J3SKbtA_yNqA0rgUflKO1mFLmPJtE765FsSdqIxhttZYcMqioh/s1600/156089_1243039211627_1698770627_437945_3854554_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjgmavBN1C1yM4BRG9dBxixoq8V_fRbIVWbmz1ZcGwS4LXYauEUflYrl0ROQVIYEHS4ztoQoRISInNhLFOu_ViSOoZM_1J3SKbtA_yNqA0rgUflKO1mFLmPJtE765FsSdqIxhttZYcMqioh/s640/156089_1243039211627_1698770627_437945_3854554_n.jpg" width="425" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Picture of Gen and Andy - The 2010 Victorian All Welsh Show<br />
Picture by Raelene Milvain</td></tr>
</tbody></table><br />
That last month or so leading up to my transplant, was the first time I could really feel I was dying. It really affected me when my dad said a month or so after my transplant - "I knew you were in trouble when you just lay on the couch, and you didn't even have the strength to go and see Andy for 3 days after you got home". <br />
<br />
It is hard to describe this beautiful vitality I have coursing through my body - and you notice it so much because I have been without it for so many years. That is why the simplest tasks that could be so mundane for someone else, are an absolute wonder for me.<br />
<br />
I thank you for all your support and love throughout this time. Please - can you spare a thought and prayer for my donor's family and friends, who will be having Christmas without her this year. <br />
<br />
Much love and blessings to you all for a safe and healthy Christmas.<br />
<br />
If I'm fat after Christmas, it's because I ate all the of the gingerbread house!!<br />
<br />
Love Genevieve<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUejSFMgRdg_ij_h7nE7ohpR83vprWMdMt8bet80T_5iZD1RvSzvTGuEJaJb0AHcFQbIeatOTNEboWRtjLeSkvOMnxem3jjetZrd1c2T3DF6F1uF_j6oyu4vdof3OW2eEV7yXlGb4jkYRY/s1600/AndyGenshootDec2010+014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="400" n4="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjUejSFMgRdg_ij_h7nE7ohpR83vprWMdMt8bet80T_5iZD1RvSzvTGuEJaJb0AHcFQbIeatOTNEboWRtjLeSkvOMnxem3jjetZrd1c2T3DF6F1uF_j6oyu4vdof3OW2eEV7yXlGb4jkYRY/s400/AndyGenshootDec2010+014.jpg" width="276" /></a></div>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com5tag:blogger.com,1999:blog-4861210268057946738.post-47979791065662503682010-10-09T18:43:00.002+11:002010-10-10T08:22:05.042+11:00Saturday 9th October, Week 15 Post Transplant.<strong><u>Gym</u></strong><br />
<br />
I feel like I have finished a term of school, because yesterday I finished up my last gym session. I have really loved doing gym, but the driving to and fro is tiring and the outing generally eats up that whole day. So I'm looking forward to having more time to myself, and putting a bit of distance between the hospital and I.<br />
<br />
I was rather chuffed when I managed to pull off the best distance anyone has ever done in a 6 minute walk test at the Alfred Gym! At 7 weeks as you know, I got 715 metres - the women's record. Well yesterday, 15 weeks post transplant, I pulled 780 metres, beating the blokes record by 30 metres!! Our head physio said he was a 6 foot two rugby player, haha!!<br />
<br />
The staff, in particular Louise Fuller, who is the head of the Pre and Post Transplant gym, are a wonderful group of dedicated people. Lou knows exactly how much exercise to give you each week - how much she can push you, and when she thinks you need to pull back. She is full of zest for life and loves her patients achieving goals big and small, and always give a whoo hoo when you do something exciting! <br />
<br />
We are so lucky to have her and all the staff who work there. I will miss catching up with them and the patients and seeing how other patients progress.<br />
<br />
The thing I noticed the most in gym, is that most patients are quiet to start off - mostly because you just feel so unwell and want to go back to bed!! You don't feel great so your not that talkative, and also you don't know anyone. Eventually you start feeling better, and get familiar with your group (the education talks also help to break the ice) and you start talking more. Well the gym sessions get a lot longer!! And Lou has to start being a teacher, and tell us off for not working!! Hehehe.<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ijpXntYDIEo85tqN5nRYiBRMgvMSgodbS4OTU4H3I10qPP7mGA4q5jNCDiDIKVxtRxbjwoQCKcLu1Eo7qICrNlhytm50PVtgx51vD0FF6uK-I9ez-bChwvmygI4r2mBBZe62CGEOUgLP/s1600/Lastgym8thOct2010+014.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ex="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1ijpXntYDIEo85tqN5nRYiBRMgvMSgodbS4OTU4H3I10qPP7mGA4q5jNCDiDIKVxtRxbjwoQCKcLu1Eo7qICrNlhytm50PVtgx51vD0FF6uK-I9ez-bChwvmygI4r2mBBZe62CGEOUgLP/s400/Lastgym8thOct2010+014.jpg" width="306" /></a></div><div class="separator" style="clear: both; text-align: center;"><br />
</div><div class="separator" style="clear: both; text-align: center;">Gen and Ranj - Ranj helped me get up for the first time after my operation.</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilB9UfPb79IWxAwp1pqIVxBxXJNZIIcfoc00bQX6CqsO-bibdJukHKf4hqFUMMkUAD-qK7mpVKTqNqND-Xq5no_JcGeUhVZb_0B6_VINWrhQCLuLu-3iFJn5tl6wDpKVCNkHVCqLhynal1/s1600/33459_432021821183_715326183_5432723_6032319_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ex="true" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEilB9UfPb79IWxAwp1pqIVxBxXJNZIIcfoc00bQX6CqsO-bibdJukHKf4hqFUMMkUAD-qK7mpVKTqNqND-Xq5no_JcGeUhVZb_0B6_VINWrhQCLuLu-3iFJn5tl6wDpKVCNkHVCqLhynal1/s400/33459_432021821183_715326183_5432723_6032319_n.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">Gen, Vedad (physio) and fellow transplant recipient, Chris.</div><br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu-wg3GtG6JfrENx_aQIaHBr8L8kkEZx_i0ZvGIgg1W8T2CAe9hHAdzPxKiHMO9YgRDX7NG4ygRexl1uwBPnBEwZkQm7HFTQXR3R1AUGp6_RGq8qeGqTr4EvBAe9KdzyVoo8lbYfKmwz-B/s1600/Lastgym8thOct2010+011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ex="true" height="297" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiu-wg3GtG6JfrENx_aQIaHBr8L8kkEZx_i0ZvGIgg1W8T2CAe9hHAdzPxKiHMO9YgRDX7NG4ygRexl1uwBPnBEwZkQm7HFTQXR3R1AUGp6_RGq8qeGqTr4EvBAe9KdzyVoo8lbYfKmwz-B/s400/Lastgym8thOct2010+011.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">Our wonderful Lou, Gen and Chris.</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil7ZpOSdn9mni0XSdcQRnCfw_3dMB6UFELOXE4sB_neUz_SDhiH6Xm_4kwWaaS7rnHUZtFIKJHD7bwt5Zc_6sSIXDiD8Zf_mkEQvxN9SkFPq95ci6XmH7tYvGwlul_JtRjlikkCs2nE5p0/s1600/Lastgym8thOct2010+003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ex="true" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEil7ZpOSdn9mni0XSdcQRnCfw_3dMB6UFELOXE4sB_neUz_SDhiH6Xm_4kwWaaS7rnHUZtFIKJHD7bwt5Zc_6sSIXDiD8Zf_mkEQvxN9SkFPq95ci6XmH7tYvGwlul_JtRjlikkCs2nE5p0/s400/Lastgym8thOct2010+003.jpg" width="400" /></a></div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">Chris and Gen holding the plank!</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg572fdqjYug7PlQ5ojaf-ScZElHu6VCc0gzQCK3xDv4TzVZJPWXaWhc_EGai-vbI9hYGe9v2Cz02VZp9vAMjFavP1bijrV5ZlpLcsQO5X0gzpJzHlgj9DL039xAviKb0Tnnei655FEbDdB/s1600/Lastgym8thOct2010+004.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" ex="true" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg572fdqjYug7PlQ5ojaf-ScZElHu6VCc0gzQCK3xDv4TzVZJPWXaWhc_EGai-vbI9hYGe9v2Cz02VZp9vAMjFavP1bijrV5ZlpLcsQO5X0gzpJzHlgj9DL039xAviKb0Tnnei655FEbDdB/s400/Lastgym8thOct2010+004.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: small;">Phew - did it!</span></td></tr>
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOub6m4HmQzHa9SQoqAYz3nsAxhHvBMaeSqORsPCrFCs6vEfErFJYZg3BzOjbkqifl14h-O4jVkrmtOSfx8AeCC6aw0lworhFLrJZZAR3hLpwV3AwcsCJwe9CMXHuxQTPrYo6ZrqyG2g2C/s1600/Lastgym8thOct2010+015.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ex="true" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOub6m4HmQzHa9SQoqAYz3nsAxhHvBMaeSqORsPCrFCs6vEfErFJYZg3BzOjbkqifl14h-O4jVkrmtOSfx8AeCC6aw0lworhFLrJZZAR3hLpwV3AwcsCJwe9CMXHuxQTPrYo6ZrqyG2g2C/s400/Lastgym8thOct2010+015.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">This lovely lady and I suspect we have the same donor (she received a heart). </div><div class="separator" style="clear: both; text-align: center;">Same day, near the same time op, and same blood group.</div><br />
<strong>Horse Riding</strong><br />
<br />
Several weeks ago, I went home to mum and dads and had my first ride on Andy. Wow what a wonderful experience. To be able to ride trot and canter again, without feeling like I'm underwater fighting for breath, was just fantastic. Since then I have ridden about 5 or so times, and Andy is back now in Melbourne.<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglipM1PYBxH3mQFvfxkdUo1vbdEGA-ZCfFiM4gdryNg39gOZMfLKTcDGjcsK9YNpvR5U_OPcAsP-pBkZJTPnu2_7PsvUbqmJR6GpmuhpC6nFcJfj9JwhMU-6SJm0r6epHivuSgys13aeMC/s1600/firstridepostLT2010+003smallerhorsechat.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ex="true" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEglipM1PYBxH3mQFvfxkdUo1vbdEGA-ZCfFiM4gdryNg39gOZMfLKTcDGjcsK9YNpvR5U_OPcAsP-pBkZJTPnu2_7PsvUbqmJR6GpmuhpC6nFcJfj9JwhMU-6SJm0r6epHivuSgys13aeMC/s400/firstridepostLT2010+003smallerhorsechat.jpg" width="385" /></a></div><div class="separator" style="clear: both; text-align: center;">Gen and Andy - first ride.</div><br />
The first few times, I got my dad to help with saddling up and such, just in case it was too soon for my sternum to be doing the girth up and such! But I can do it all myself now, and weights (such as carrying heaving shopping bags) and mostly ok for me to carry now too. <br />
<br />
My sternum does feel completely solid now - though occasionally things still click or pop, which is surrounding tissues, tendons etc! Once I realised it was that, and NOT my sternum, I stopped panicking! haha!!<br />
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I still find the smallest things amazing. Just being able to lead Andy, without having to constantly ask him to slow down (he has a naturally quick paced walk!) and catch my breath - to carrying his heavy rugs, to just being able to have the energy to ride! It's all so magical. <br />
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And it's like that with everything. To jumping out of bed in the morning, feeling energetic and no mucus to cough up. To go for long hour walks exploring my suburb (which I was never able to do since I moved here!), and to laugh, without becoming exhausted from a coughing fit!<br />
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This is a video of Andy and I on our fourth ride. It's taken at my agistment property, near the lovely Dandenongs.<br />
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<strong><u>Mum</u></strong><br />
<br />
Darling mum has been living with me ever since my operation - and quite a bit before that too while I was in hospital having my IV's antis and then doing home IV's.<br />
<br />
Next week she will be able to go home, and get back to her normal life with her husband! It's been a long and sometimes lonely time for Dad - I am so very lucky to have such wonderful parents. <br />
<br />
I can never thank them enough for what they've had to give up these last four months or so - but hopefully seeing me the way I am now, it was well worth some of the sacrifices they had to make!<br />
<br />
I'll miss mum enormously (especially our ritual of watching Lost - we made it through all seasons 1 to 6!!!) but I am so glad she can go home and be with Dad, and they can go on holidays again! :)<br />
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<strong><u>Other bits and bobs</u></strong><br />
<br />
I'm still juggling doses of insulin and will be seeing the diabetes doctors to discuss trying a different insulin (I'm currently on one that is short and long acting) as I keep having hypos in the night. My body simply wakes itself up and I need to eat to get my BSL's up again. I keep two pieces of rye bread by my bed and nom nom nom!! Not good for watching the weight, but I haven't got any other choice at this stage!! So I hope that appointment comes up soon! Otherwise I will get very fat, lol!!<br />
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I'm also still juggling anti-rejection medications in regards to my kidney function, so still having regular blood tests and changing doses accordingly. But the doctor appointments are getting longer inbetween, and I no longer feel like I am living at the hospital!<br />
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I think that is all the news. I still pinch myself every day at what I am able to do now. It really is a miracle.<br />
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Bye for now<br />
Love GenevieveGenevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com0tag:blogger.com,1999:blog-4861210268057946738.post-31333551985340542062010-09-10T17:20:00.000+10:002010-09-10T17:20:39.233+10:00Friday 10th September - Week 11 Post LT<u>Lung Function</u><br />
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Good news is my lung function has come up again to 70% Fev1 so that was very exciting!! I am really feeling the difference in my breathing now...it's so slow and steady now, just lovely...:)<br />
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<u>Overall</u><br />
<br />
With my tacro FINALLY finding some stability, I was allowed to bring back down my dose of prednisolone (to 15mgs daily). This has had a big affect on my reflux and getting my insulin doses right for what I eat. Overall I have felt more energetic and less tired and more of feeling "normal".<br />
<br />
My splints near my knees have nearly healed and I will hopefully attempt to start jogging again next week.<br />
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Just a short update for this week!<br />
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Until next time!!Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com0tag:blogger.com,1999:blog-4861210268057946738.post-38136024400204893462010-09-03T16:56:00.005+10:002010-09-04T10:13:33.140+10:00Friday 3rd September - Week 10 Post LTSomeone put me down!! Yep I went lame this week. Haha....<br />
<br />
<strong>Exercise</strong><br />
<br />
Last weekend I started feeling sore on the inside of both knees. On Monday it hurt to jog in that area, Tuesday I didn't jog but still did a long walk, and by Wednesday I told Lou our gym physio. No jogging for at least 7 days - she treated me with ultrasound and I didn't do any tready work or stepping that day. Ok to do a bit of a walk but nothing like my 50 minute walk/jogs that I was doing! Today we repeated the ultrasound and again I didn't do any step or treadmill work.<br />
<br />
Apparently at high doses of Prenisolone, the tendency to have these sort of things (muscle and joint injury) is more likely. Ahhh thanks Mr Pred!! And thanks for my fat face too....:-(<br />
<br />
<strong>Reflux</strong><br />
<br />
Because of previous liver and bowel issues, I see a gastroenterologist every 6 months.<br />
<br />
Everything was good, but he suggested cutting down the dose of Nexium I was on - long term use can create problems.<br />
<br />
So I did that, but unfortunately I became very sick over the weekend with pain and nausea from reflux - so I went back on them and it took a few days for the body to right itself. Ever since I've had pain niggles but it's tolerable.<br />
<br />
<strong>Checkup</strong><br />
<br />
Last Monday I had my checkup and he said it's fine to be on the dose of Nexium I am on at this stage of my recovery (phew). Tacro is still up and down and my kidney (creatinine) levels are still too high. So the dose of Tacro has been lowered yet again and we shall see what next Monday's blood test reveals!<br />
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<strong>Diabetes</strong><br />
<br />
Am still fiddling with my insulin doses but I have lowered the night time dose so I can avoid the night time hypos. I make the lunch time insulin dose the largest because it seems to be the time when my levels really go up.<br />
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The levels also have been higher because of slowing down on my exercise. Everything is so linked!!<br />
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<strong>Sleeping</strong><br />
<br />
Overall this has greatly improved. I wake up about 2 times a night now and generally fall back to sleep quickly. I still wake up with night sweats, and sometimes reflux pain around 5am - 6am. <br />
<br />
Aside from Mondays where I get up about 6am to be at the hossy by 8.30am for a blood test and the other bits and bobs, I sleep in til near 8 as I always have my morning medications then. If I've had a bad night or still feel tired and it's a day off, I have my breaky and meds and go back to sleep for a while. If I feel ok I push on and might have an arvo kip. Sometimes I don't need an arvo kip either but need to go to bed early. Overall, I still crave lots of sleep! lol<br />
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<strong>Riding</strong><br />
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Counting down til the "moment"...!!!<br />
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<strong>Gym</strong><br />
<br />
Quite a few people have left now as they finish their programmes. I find I am taking more and more time to finish as I keep getting things added in to do, and I am talking more...lol!! I feel like I'm back at school and I'm getting distracted catching up with people!! It's been a wonderful group and you feel sad when people leave!!<br />
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<strong>Driving</strong><br />
<br />
Been doing a lot of driving this week and it's an absolute luxury to have this independance back!!<br />
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Think that's all for now<br />
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Til next time, thoiya later!!<br />
<br />
:)Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com0tag:blogger.com,1999:blog-4861210268057946738.post-83852939939232347442010-08-30T22:50:00.011+10:002010-09-04T11:09:39.967+10:00Pictures of Andy and I through the years<div class="separator" style="clear: both; text-align: center;"></div><strong><u>Andy</u></strong><br />
<br />
Today was my horse's 24th birthday. For those who don't know much about Andy and I, I've had Andy since he was 2 and a half. I was about 14 when Andy came into my life. We have grown up together and he has been the most wonderful companion. Years of competitions has led us to journeys all over Victoria and competing in different disciplines. <br />
<br />
As my health deteriorated, Andy was the perfect horse - with his lovely temperament, he didn't need a lot of work and I could still take him to comps easily. He is easy to float so it was no hassle when I wanted to go home to Mum and Dads and have a holiday. He is easy to handle and Mum and Dad can do his rugs and feed him confidently or even float him themselves when I wasn't well enough to take care of him.<br />
<br />
Other people have ridden and competed with him when I wasn't well enough anymore to do it myself, and most recently a lovely lady called Kate has been keeping him fit until I can begin riding him again....which will be in about a months time, when he returns to his agistment in Melbourne. Cannot WAIT! :)<br />
<br />
Andy loves people and other animals and it's just a joy being with this beautiful animal! :)<br />
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A reader has requested Andy pics, so how can I not oblige? :)<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC7zaQg45cgsov6Eb9JrMOXDOtqYn35bqwoTb8HatLZ6lwchxiB6v3lCpCF6ePYAc5jQB2dPtxKb70RMcmAfghoFHJfQ-Ag6c0jbFhV8YYwkYCVjxY8k4El3yRV0y057AVoHlrBPxjPQxE/s1600/Prettypine1989.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjC7zaQg45cgsov6Eb9JrMOXDOtqYn35bqwoTb8HatLZ6lwchxiB6v3lCpCF6ePYAc5jQB2dPtxKb70RMcmAfghoFHJfQ-Ag6c0jbFhV8YYwkYCVjxY8k4El3yRV0y057AVoHlrBPxjPQxE/s320/Prettypine1989.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">First Gymkhana 1989</div><div class="separator" style="clear: both; text-align: center;"><br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguKSQl23fxUx8GgSV1Cwk3zDLRquxLi05qARKp_58zOPZFrPeUQoNUGSP-sSum8Raoc_kNI5w0Kc_gc5R1d4gsy1tKCCkO8Yxo5KRl8XilIBREfO3KhQy-Njz83gS6VmA-HOFaRk4BZ1if/s1600/AndyGenDeniODE1991.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="317" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEguKSQl23fxUx8GgSV1Cwk3zDLRquxLi05qARKp_58zOPZFrPeUQoNUGSP-sSum8Raoc_kNI5w0Kc_gc5R1d4gsy1tKCCkO8Yxo5KRl8XilIBREfO3KhQy-Njz83gS6VmA-HOFaRk4BZ1if/s400/AndyGenDeniODE1991.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">Jumping in Pony Club, 1991</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;">More jumping - Pony Club Days!</div><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibXQK26kirwJ7thU8hfLdbswzDYWpMZpUuX7HO47btL0U33H18Es5nepMMgvCIK6s1ht7aCWaDuw6qT-9EoBmoY23GiC1eHHDEFrBCwsugBA2yK6ofNpgBWIENvys4J2E3hggxPwrLESmL/s1600/tttshowing20052.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="351" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEibXQK26kirwJ7thU8hfLdbswzDYWpMZpUuX7HO47btL0U33H18Es5nepMMgvCIK6s1ht7aCWaDuw6qT-9EoBmoY23GiC1eHHDEFrBCwsugBA2yK6ofNpgBWIENvys4J2E3hggxPwrLESmL/s400/tttshowing20052.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2005 TTT HRCAV Showing Championships</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjX10hswfCQvUlY1UAOqoCAdu4VADIEpzgo1-ChbVI_LYOc-f_dQt8WqO6uq-xmiOF6Z1SBoipwfMsxSeBOcVBl5-6zusgp9T3Q2HyPqmt6_YOVWZSLL0FvuK-QR-ZeiiUU5cWtDCrpBgf/s1600/AndyGenCTMentone2007edit+003.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="296" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjjX10hswfCQvUlY1UAOqoCAdu4VADIEpzgo1-ChbVI_LYOc-f_dQt8WqO6uq-xmiOF6Z1SBoipwfMsxSeBOcVBl5-6zusgp9T3Q2HyPqmt6_YOVWZSLL0FvuK-QR-ZeiiUU5cWtDCrpBgf/s400/AndyGenCTMentone2007edit+003.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2007 Mentone CT Comp day. Brother Mike, Andy and I</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm1_MN_vZCyeO0qlKF5jKgNM7mhdVj9KTZhIahKfg68lD4qT4rSvRHO5cvmJuycNLPsaxwbcFGQmjESY4ONuTPpW9hU99fKKjTm8hc7EQvo6LSyyyg6YAQxOiGvMl2NZiV-nw6lIH8QHpY/s1600/AndyGen.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjm1_MN_vZCyeO0qlKF5jKgNM7mhdVj9KTZhIahKfg68lD4qT4rSvRHO5cvmJuycNLPsaxwbcFGQmjESY4ONuTPpW9hU99fKKjTm8hc7EQvo6LSyyyg6YAQxOiGvMl2NZiV-nw6lIH8QHpY/s400/AndyGen.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2006 HRCAV TTT Showing Championships<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFEIFm4UJtmCWPxgYdw1M8sNqThou7cViHS952cT3d_L6RV_zhxNFgtDWthVeICvh75tyh4UaueISsSP4F9ZsHTF-Gfbgk49DmGeqelJjXryEy8GpgYdVd1H296ufP7BfVQCVFVIrvjms9/s1600/andygenpracticenov20040001.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="536" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiFEIFm4UJtmCWPxgYdw1M8sNqThou7cViHS952cT3d_L6RV_zhxNFgtDWthVeICvh75tyh4UaueISsSP4F9ZsHTF-Gfbgk49DmGeqelJjXryEy8GpgYdVd1H296ufP7BfVQCVFVIrvjms9/s640/andygenpracticenov20040001.jpg" width="640" /></a></div>Andy and Gen working out at Andy's agistment, 2004 ( I know, the hands, such a bad habit of mine!)</td></tr>
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<tr><td style="text-align: center;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZS37mZoBWDJkw0jkgJp2ET8azeGgvw_IG1S3uezbb4jAVs2z5-a_JNHFDekQHqLhfYgW8HZ6_1MAqwDErurzHCsCKPZoRIM6ccBDbdDLVDmZ6fOxVlr4p7Wn9fFkzdb4ZHAowNcPeGQgV/s1600/2008RoyalMelbourneShow+006forumsize.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjZS37mZoBWDJkw0jkgJp2ET8azeGgvw_IG1S3uezbb4jAVs2z5-a_JNHFDekQHqLhfYgW8HZ6_1MAqwDErurzHCsCKPZoRIM6ccBDbdDLVDmZ6fOxVlr4p7Wn9fFkzdb4ZHAowNcPeGQgV/s400/2008RoyalMelbourneShow+006forumsize.jpg" width="316" /></a></div></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2008 Melbourne Royal Show</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmLz4vyM7uTZ4-rclFkHqQ_uPoun_09Dd0NAMwPkbBkOBxaWo3luHlxi-WQ-8JXzxMvezoi91m3Aqm_IYgDqOWOGHDBHQpcDkgjKtAB0EGHLPwI6un-ZUA2fsoYofuQEsVVE37qaXbbBYy/s1600/AndyMelTTTHorseTrials2007+016cropped.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgmLz4vyM7uTZ4-rclFkHqQ_uPoun_09Dd0NAMwPkbBkOBxaWo3luHlxi-WQ-8JXzxMvezoi91m3Aqm_IYgDqOWOGHDBHQpcDkgjKtAB0EGHLPwI6un-ZUA2fsoYofuQEsVVE37qaXbbBYy/s400/AndyMelTTTHorseTrials2007+016cropped.jpg" width="257" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dear friend Mel competing on Andy at the 2007 TTT HRCAV Championships. </td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsY7xugyD0dRyWyTCoX-TaRS87vQrgdTbH8vNiYrEKE70Vwry8AwluqISctQaQa_dokpbTKeEiAUAs5DASoMTsCUHgJ3Hs7RB297vWn3JVIs36JD0gu5yAI42SX6-zYn0sXViumBzisEb7/s1600/TTTCTONE.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsY7xugyD0dRyWyTCoX-TaRS87vQrgdTbH8vNiYrEKE70Vwry8AwluqISctQaQa_dokpbTKeEiAUAs5DASoMTsCUHgJ3Hs7RB297vWn3JVIs36JD0gu5yAI42SX6-zYn0sXViumBzisEb7/s640/TTTCTONE.jpg" width="393" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">2002 HRCAV Combined Training Championships. Won the teams and my section!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihOav0Zz3S7MkYbptODZvRQpnXCYSPzBsJuSPVgnQ6znDGifzS2Om_TJC98jUZ3dj8tyFoLFNNlVkt0Bt13nm65nNm8qTb6gU0IUXRPmvnzCgjABRipQXXD2gh5v8hmTunhf8-kAzG56en/s1600/IMG_7007a.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="362" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEihOav0Zz3S7MkYbptODZvRQpnXCYSPzBsJuSPVgnQ6znDGifzS2Om_TJC98jUZ3dj8tyFoLFNNlVkt0Bt13nm65nNm8qTb6gU0IUXRPmvnzCgjABRipQXXD2gh5v8hmTunhf8-kAzG56en/s400/IMG_7007a.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Giving Poppy Mason a ride!</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWaoODla8XuFhsptlcTeGcKe2QffgevgpaWkrfu4HbqgqbEFbC6pPNXHz-64ulpK9DimmO3e4T1UsmbY4hp8_cakyIgU5i7GkRf3oLexkV9AmfDYKzg52wRRH4EQv2Jz2Pk9Flaea3Kicm/s1600/AndyJan2006little+006.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgWaoODla8XuFhsptlcTeGcKe2QffgevgpaWkrfu4HbqgqbEFbC6pPNXHz-64ulpK9DimmO3e4T1UsmbY4hp8_cakyIgU5i7GkRf3oLexkV9AmfDYKzg52wRRH4EQv2Jz2Pk9Flaea3Kicm/s400/AndyJan2006little+006.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hanging out in Bamawm with Grandma and Grandad. January 2006<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5BaG0l4govaqoGN9LKybc0l3XzfM0J0UFBqoJf-xRE_1WjAAvRVomz8fsOqAgJJUIjGMDNOSJbgPFuBxUuWZUlEm6YKErBcyPRgbff7RSWq1KPhBxpbSDh6N0cxw8qgRpAtobrxgYRact/s1600/Doongala_08_73smaller.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="505" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi5BaG0l4govaqoGN9LKybc0l3XzfM0J0UFBqoJf-xRE_1WjAAvRVomz8fsOqAgJJUIjGMDNOSJbgPFuBxUuWZUlEm6YKErBcyPRgbff7RSWq1KPhBxpbSDh6N0cxw8qgRpAtobrxgYRact/s640/Doongala_08_73smaller.jpg" width="640" /></a></div>2008 Doongala HRCAV Horse Show. Photo taken by Julie Wilson.<br />
Julie's website is <a href="http://www.jwep.net/">http://www.jwep.net/</a></td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGxfo_vT-fOI_8HEYbpchMhWgFhXQkN2W7R-5qQPwOvNRmOxaaMEG-T2D3ILABrye6H18ZuEDP4Lnu_w3qzvqYkJXo0-koUGaSNavNm0ntDuVwdoVb6KwxQN1tU0DrNZvH90y-ABrimFQ2/s1600/Barastoc2008+003.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiGxfo_vT-fOI_8HEYbpchMhWgFhXQkN2W7R-5qQPwOvNRmOxaaMEG-T2D3ILABrye6H18ZuEDP4Lnu_w3qzvqYkJXo0-koUGaSNavNm0ntDuVwdoVb6KwxQN1tU0DrNZvH90y-ABrimFQ2/s640/Barastoc2008+003.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Barastoc Show, 2008</td></tr>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzvMtuuSQxa7idngor0QC52krrn6n6hFGI4oThAxatqC11w7rhUo5Ke2JoJJnh6gRfYBzT5zjZDIFSWrfxz4BDNKZTLgU39hjqT2M3lDa7VsRYNQSIDYjtwm9Qa4Sc7bNM4RKXH0m_qlYh/s1600/Andysculpturemeet+001.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="480" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjzvMtuuSQxa7idngor0QC52krrn6n6hFGI4oThAxatqC11w7rhUo5Ke2JoJJnh6gRfYBzT5zjZDIFSWrfxz4BDNKZTLgU39hjqT2M3lDa7VsRYNQSIDYjtwm9Qa4Sc7bNM4RKXH0m_qlYh/s640/Andysculpturemeet+001.jpg" width="640" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Andy meets himself - Sculpture of Andy by Karen Grigson.</td></tr>
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<tr><td style="text-align: center;"><div style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx4OGulap06NVZTdK1oOknB23z1lq5dSEWgOi53sN3Wp2cl6A7ysFyUyG-Q4S04-STAQ1Fy8s2Zyzug2papnmJjpIUazivqlyn5kbstiTDEUcE5tuVFVrGBJYYfRLgbyslQ6RI2t-SLaEs/s1600/genandymay2009.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="640" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgx4OGulap06NVZTdK1oOknB23z1lq5dSEWgOi53sN3Wp2cl6A7ysFyUyG-Q4S04-STAQ1Fy8s2Zyzug2papnmJjpIUazivqlyn5kbstiTDEUcE5tuVFVrGBJYYfRLgbyslQ6RI2t-SLaEs/s640/genandymay2009.jpg" width="467" /></a></div></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Gen and Andy, May 2009<br />
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At mum and dads swimming in the channel. Gen, Andy, Oscar the dog and niece Stephy. Christmas 2009<br />
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</tbody></table><img height="96" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbt4dcTfAqnbbtcLmzkbVjve7qk3m3h-zuMSLf2mDqmaUt0C7pqw_H9VVuJTGMjQr5m1hpCIKzRN8UEDSUP041PISQMKf75Uzyo4ktTKU9r8vCcZkiCjeLA_d2ce5jXlcx1_Iy9U001OfN/s320/bara5croppedfurther.jpg" style="filter: alpha(opacity=30); left: 420px; mozopacity: 0.3; opacity: 0.3; position: absolute; top: 8288px; visibility: hidden;" width="85" /> <br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbt4dcTfAqnbbtcLmzkbVjve7qk3m3h-zuMSLf2mDqmaUt0C7pqw_H9VVuJTGMjQr5m1hpCIKzRN8UEDSUP041PISQMKf75Uzyo4ktTKU9r8vCcZkiCjeLA_d2ce5jXlcx1_Iy9U001OfN/s1600/bara5croppedfurther.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbt4dcTfAqnbbtcLmzkbVjve7qk3m3h-zuMSLf2mDqmaUt0C7pqw_H9VVuJTGMjQr5m1hpCIKzRN8UEDSUP041PISQMKf75Uzyo4ktTKU9r8vCcZkiCjeLA_d2ce5jXlcx1_Iy9U001OfN/s320/bara5croppedfurther.jpg" width="286" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Melanie Wu riding Andy in the Seniors Class at Barastoc 2010<br />
Photo by Suzanne Coutanceau</td></tr>
</tbody></table><div class="separator" style="border-bottom: medium none; border-left: medium none; border-right: medium none; border-top: medium none; clear: both; text-align: center;"></div>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com3tag:blogger.com,1999:blog-4861210268057946738.post-28070895678868830572010-08-28T21:38:00.001+10:002010-09-01T09:57:22.584+10:00Week 9 - 28th of AugustI've reached a few milestones this past week.<br />
<br />
On Monday I had a quick test to see if I'm fit to drive again. This involved a few questions, some upper body movements (ie to see if I can turn in the car comfortably to look for blind spots), and an eye test.<br />
<br />
I was then told to wait a week for the letter of permission (that I carry with me until Victorian Roads has the official letter too), and I got that on Friday, so I'm now free to drive...wonderful. :)<br />
<br />
This past week I also reached week 7 of my gym rehab - at the start of this gym programme (ie week 1) you do a 6 minute walk test to find out how far you can go in 6 minutes. You go up and down the corridor that leads to the gym. I got about 520 metres by memory - you do this test twice. It also involves getting on a chair that is able to measure how much force you use with a leg muscle, going up as hard as you can (from the knee) - have a rest, then pressing down again. You repeat this 6 times.<br />
<br />
You repeat this at 7 weeks. I improved my 6 minute walk test - the first time I got 700 metres, and the second time I got 715 metres. And I'm told this is the ladies record! So I was pretty chuffed about that!!<br />
<br />
I'm doing this as part of a study too - some patients are doing only 7 weeks in total - the other group are doing 14 weeks. Whether you're part of a study or not, they'll still do 6 minute walk tests to assess your fitness at the beginning and end of your gym rehabilitation. You also do these tests as part of your lung transplant pre assessment.<br />
<br />
<strong>Other issues</strong><br />
<br />
My tacro is still being a pain and it's either too low or too high and my kidney function (creatinine levels) are still too high - but they have been on their way down as the tacro dose was lowered. So I'm still having very regular blood tests keeping on eye on this and no doubt more tacro dose adjustments will be made.<br />
<br />
My appetite has settled down and I'm no longer starving all the time. I still need to eat regularly, eating low fat and low GI and am still experimenting with certain foods to see how my glucose levels are. <br />
<br />
<strong>Bronch</strong><br />
<br />
A few weeks ago I had another bronch and the results were great again with no rejection. I still have a bit of gunk surrounding the join of my old tube to new tube of the lungs, and am still treating that with an anti-viral medication as I have aspergillus.<br />
<br />
<strong>Alternative therapies</strong><br />
<br />
To help with my organ function, insomnia, reflux, muscle fatigue, and the last bit of flem, I have been using acupressure and essential oils. In the mornings I massage my legs, my feet and my chest after I've had a shower. At night I do the same. And sometimes I have a foot bath with oils in them, to help me sleep. Essential oils all have different properties and specific things that they work on. I used to use them a lot in years gone by too. When my lung function got very low, I felt that they were a bit much for my lungs so I stopped using them. So it's nice to be using them again. I don't use grapefruit at all as that is contraindicated against anti-rejection medication as a food to eat or juice to drink so I steer clear of it as an oil too.<br />
<br />
<strong>Diabetes</strong><br />
<br />
The one (and only!) good thing about diabetes is that it makes you watch your sugar load. We all love sugar, but if you can give it up, it is much better for you. It is quite literally a nasty poison for your body and affects your immunity, so given that I'm now immune suppressed, I figure that it's a good in terms for my body to avoid it!! Doesn't mean I still don't crave wagon wheels and snickers though...sniff....<br />
<br />
I have found a good sugar alternative called Xylitol that doesn't affect my glucose levels at all. I experimented with another sugar alternative first and even though it claimed it was diabetes friendly it sent my glucose levels right up even though I had such a small amount! Like anything, I am having this in moderation - I was just REALLY missing a sweet cup of tea!!! So now at least I can. If your interested in reading more about this, the link is <a href="http://www.naturallysweet.com.au/g/176/about-xylitol.html">http://www.naturallysweet.com.au/g/176/about-xylitol.html</a><br />
<br />
<strong>Transplant Buddies</strong><br />
<br />
For anyone who is looking for some support online - I am a member of a great group that is American based and has a very active community. It not only covers lungs but all sorts of organs. So anyone pre or post transplant, or someone who would like to know more information, visit<br />
<br />
<a href="http://www.transplantbuddies.org/">http://www.transplantbuddies.org/</a><br />
<br />
Until next time!! <br />
<br />
:)Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com3tag:blogger.com,1999:blog-4861210268057946738.post-6002605879855961842010-08-11T23:25:00.003+10:002010-08-13T21:12:42.737+10:00Friday the 12th of August - 7 weeks post transplant.Gidday everyone, <br />
<br />
I've tried to update several times but it's tricky fitting everything in when you are making yourself have afternoon naps. They do make the world of difference. But it does limit the time in the day - it makes the days go very quickly! I get too tired if I don't have them. Those ten days straight of no sleep in hospital plus bad sleep since I am still catching up on, let alone everything else I have to do on a daily basis.<br />
<br />
<strong>Lung function</strong><br />
<br />
I had my first lung function (LF) today and it was 62% fev 1. Before transplant my LF it was 29% fev1. So I'm very happy to have that for my first try! Over the next year to eighteen months this will keep improving. <br />
<br />
FEV1 means Forced Expiratory Volume in the first second. It is obtained during the spirometry and represents the amount of air that leaves the lung when all the effort is put into exhalation. <br />
<br />
It is the main reading used to monitor CF lungs and also post transplant. It is also used to monitor lung health in other lung diseases. A 10% sudden drop or more in lung function post transplant, can indicate rejection. So it is a great way to monitor lung health and keep on eye on this. I have also been given a LF monitor to do at home morning and night. I have to do this and record the readings for about the first year.<br />
<br />
It is very different doing lung function now I have no tightening of the airways and no mucus to contend with as I do it. Most people with CF have a good old coughing fit after doing each try. It is not pleasant and takes a lot out of you. <br />
<br />
<strong>Jogging</strong><br />
<br />
Last week was a bit special (I've forgotten which day now!) as I got to jog for the first time on the treadmill. I got pneumonia twice in 2004, and my lung function plummeted and marked a huge change in my quality of life. I had gone from being able to jog for 50 minutes (with around 50% fev1) to not at all. <br />
<br />
I managed to jog for 1 minute and it felt wonderful!! In preparation for this, I had been jogging on a mini trampoline for one minute starting this week. Going on the trampoline takes the shock out of the landing for the sternum. But my sternum seemed to cope fine!! I didn't realise Lou the physio, had that in store for me so soon. I thought it would be another week or so before attempting to jog.<br />
<br />
Today I jogged for 2 minutes but in one minute intervals....I'm finding it harder on the muscles than on the lungs at the moment.<br />
<br />
<strong>Stomach</strong><br />
<br />
To my frustration, I had a lot of pain over the last 10 days or so but since my checkup on Monday things have improved again. There were two reasons for this.<br />
<br />
One issue has been reflux (caused by medication, mainly the prednisilone, it is very tough on the stomach), and the other was diarrhoea ...I had swapped reflux medication to help with the levels of my anti rejection medication tacrolimus- remember tacro has an optimum therapeutic level - it's quite tricky getting the right dose, and I was either getting too low a reading, or too high. You can add this particular reflux medication, to help RAISE the level of tacro, without actually having to add another tablet. But it failed on both accounts...my pain tummy started after swapping the reflux medication. At my appointment last Monday, we added the previous reflux medication I'd been on (Nexium)...and things have started to settle. Then at the next appt, we added Nexium at night, as I was still waking up with stabbing pain around the same time each morning. <br />
<br />
The diarrhoea was caused by high levels of magnesium, as the anti rejection medication (prednisolone I think AGAIN ) is sucking out my magnesium...so now I'm on a different magnesium called Biomag, and already the diarrhoea has gone away.<br />
<br />
I know I've gone into a lot of detail here, and probably a lot of people would think, ok way too much information Genevieve - but I have a lot of pre and post LT people reading this, so the detail is for their benefit...you can just skip anything that involves bodily functions if you like! HAHA.<br />
<br />
I'm still having blood tests for tacro, and it is still changing at this point in time. My blood tests also say that my kidneys are working extremely hard - again due to the medication. I've already been drinking a lot of water and herbal teas, so I'm making a big effort to drink more. Ignoring this can lead to serious complications of the kidneys - including failing of the kidneys, needing dialisis, and then needing new kidneys....so the easiest thing to avoid that is to drink more! <br />
<br />
<strong>Singing</strong><br />
<br />
It was Mum's 70th birthday last week and we had her party on the weekend. I decided to sing a song for Mum - I'd practice whenever she was not around!! Singing of course is wonderful for working out the lungs. My breath control is already hugely improved, but I still find my voice is a bit wobbly. <br />
<br />
First of all I thought it was my support system (singers' term there!) and/or voice having to catch up with the new lungs/breath, but now I think it's the shakes which is affecting my whole body. Again I have tacro to thank for that - constant trembling of my hands and body. The hands is the most noticeable - makes it very difficult to put on nail polish or put lipstick on! LOL!!<br />
<br />
The singing - well it didn't work out like I thought! About 3 quarters of the way through the song, I was thinking about the words and connected for about 1 second and I lost it! Yes the tears came out!! But ah well the family got to hear some!<br />
<br />
Mum had a fabulous time at her party - we all did...great times! :)<br />
<br />
<strong>Diabetes</strong><br />
<br />
I had a dreadful night last Friday night. I was doing well until about 2am when I woke feeling quite weird. More shaky than usual, flushing and starving. I tested my sugars and they were 3.9 so I thought perhaps I was having a hypo - even though I have occasionally had a lower reading than that during the day and felt fine. I had a jelly bean, and then made myself some toast. I felt better and fell back to sleep. A few hours later at 4am I woke with pain in my belly again (reflux?) and a horrible headache. I tried to go on the computer, but I was too uncomfortable with the headache, so I just sat up for a while. Sitting up seems to help with the pain. But the headache just stayed so I had some panadol, and eventually I fell back to sleep.<br />
<br />
In retrospect I think having the jelly bean was too much - I just needed to eat something nice and heavy like the bread. Having the jelly bean must have sent things sky high and given me the headache. I'm really not enjoying this aspect of post LT at all! I had another hypo last night and had to get up and have some<br />
food.<br />
I am super sensitive to ANY sugar at the moment - even some fruits with the natural sugars - so it's a bit of trial and error with meals that my mum and my sister are cooking for me. I think I have my right insulin levels now, but foods with sugar (sometimes hard to find things that are "sugar free" )are still sending glucose levels over 8....levels are meant to be between 4 and 8. <br />
<br />
<strong>Goals</strong><br />
<br />
Our physio got us to write down our goals recently. <br />
<br />
I hope to be competing Andy in showing and dressage by 5 months which is January or so next year, and I cannot jump Andy until about 1 year post surgery. <br />
<br />
The slow part of all this is the sternum healing. Slow and steady certainly wins the race in these circumstances! 8 weeks post rewiring of my sternum (I'm only up to week 4) is when I can start riding Andy again, but only at the walk. I also have to get someone to do all the heavy lifting - so putting on the saddle and doing up the saddle I should avoid.<br />
<br />
My other goal I'm looking forward to, is climbing a mountain called Mt Dromedary. My Nan used to live in a place called Wallaga Lake, near Bermagui, NSW. It is a stunning place and we used to visit Nan every year when I was growing up. Nan moved to Victoria when it got too much to live on her own. I miss this area a lot and haven't been back for a long time. The beaches there are stunning and I just love the energy of the whole place. I have climbed Mt Drom twice, and I would like to climb it again. So that is my other goal for next year - I've already lined up my mum and dad to come with me, and my brother and his wife want to join me too. <br />
<br />
<strong>Muscles</strong><br />
<br />
Since my glucose levels are getting better and my appetite is still ravenous - I put on weight rather suddenly last week! It coincided with jogging and I think putting on a lot of muscle mass. <br />
<br />
Before my lungs got bad, my weight was never an issue. It was the unhealthy lungs that caused me to use up a lot of energy and not put on weight. I actually had to watch my weight in my twenties! <br />
<br />
Now that my lungs are healthier, the weight is going on for the first time in 10 years! It's a very strange feeling seeing my body change so quickly!! So I'm already having to watch what I eat, as well as eating meals to keep me full to keep the sugars happy and not feel like I'm starving! It's a very tricky balance. The prednisolone does NOT help with this either - as it's like the switch to tell you you've had enough food, does not happen!!<br />
<br />
<strong>Carer</strong><br />
<br />
My sister Di has taken over as my carer for 2 weeks to give Mum a break. So we are having a lovely time catching up. <br />
<br />
<strong>Crazy Hair Day</strong><br />
<br />
A lovely lady who is riding Andy for me, organised a Crazy Hair Day at her school where she works to raise money for Cystic Fibrosis. They raised about $900 I believe, and I was so impressed with their effort....<br />
<br />
Thankyou to all who particpated in that to help CF. :)<br />
<br />
<br />
<br />
<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOUK3nBu_-lzjA0erhrT2Xp-kZKskL-m_J2tk1gO8Q5CPJAK_mNULmOZLxvb_1MHhuzWblvehKutmXNlKASbL8BKkJgjgskvz9REjOQLFiaz2__ImNWV6h2_oyWLg-SosAXa0_wDEYyxeO/s1600/38983_1499898610648_1029645788_1474326_1546708_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" ox="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhOUK3nBu_-lzjA0erhrT2Xp-kZKskL-m_J2tk1gO8Q5CPJAK_mNULmOZLxvb_1MHhuzWblvehKutmXNlKASbL8BKkJgjgskvz9REjOQLFiaz2__ImNWV6h2_oyWLg-SosAXa0_wDEYyxeO/s400/38983_1499898610648_1029645788_1474326_1546708_n.jpg" width="400" /></a></div> Mum and I at her party.Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com1tag:blogger.com,1999:blog-4861210268057946738.post-55765351895290181472010-07-27T08:26:00.004+10:002010-07-27T17:33:54.809+10:00Tuesday 27th JulyWell I woke up at 6.30am this morning and couldn't get back to sleep so I started thinking again about what I can sing at my mother's 70th that's coming up in a couple of weeks. I was looking at karaoke songs yesterday and I think I have finally found the one....makes me cry so I reckon my family might need a few hankies ready.<br />
<br />
<strong>SLEEPING</strong><br />
<br />
My sleeping continues to be a nuisance. I'm now off all pain medication and I ache a lot in my sternum but I'd actually rather be aware of it, rather than do a movement and risk putting it out of alignment again! Now that the pain medication is out of the picture, I'm now blaming my bad sleep on the anti-rejection medication called tacrolimus. The other anti-rejection medication I have is in the morning so that's why I have been able to narrow it down. Plus I looked up the side affects and sure enough one is "trouble getting to sleep and staying asleep". I'm not too bad with going to sleep, but I'm waking up continuously. It varies a lot but last night for example I woke every hour around 6 times. Plus I'm still waking up covered in sweat. I'm not having temperatures so my doctor said it's probably the body adjusting to everything. <br />
<br />
Hopefully this will settle down in the up and coming weeks! Days would be better!! <br />
<br />
It's during these awake times my brain gets active and starts writing what it wants for the blog. I've always worked like this. Whenever I've had an article to write, I've let it write itself in my head, and then when I'm ready it just seems to flow across the pages very easily. I had none of this when I was really sick, I had lost my mojo.<br />
<br />
I've just paused for a second to listen and feel my beautiful lungs take slow and steady breaths. They still continue to amaze me as does the whole journey - it's 5 weeks today since my operation.<br />
<br />
But moving on....lol. Well another problem I have with waking up in the middle of the night is feeling hungry when I do so!<br />
<br />
<strong>FOOD GLORIOUS FOOD!!</strong><br />
<br />
The amount of food I have been eating has been absolutely ridiculous. I think mum is pulling her hair out trying to keep me content!! There are 3 things affecting this. Firstly is the prednisolone which is one of my anti-rejection medications but it's also a steroid...and they make you hungry! <br />
<br />
Also because my blood sugar is still not yet sorted out, this can also cause you to lose weight, as your body cannot get the energy it needs. And thirdly as I'm doing a lot more activity, I'm needing more energy.<br />
<br />
When I got home I lost a few kilos pretty quickly and am still struggling to get that back on and my tummy just never seems to feel full!! I ate so much yesterday and I think it's the first day by about 5pm I felt like I couldn't fit anything more in!! I ate 2 pieces of toast with cheese, porridge with banana, 2 vegetarian rice paper rolls, got home and had 2 potato cakes, 4 rices cakes with avocado, almonds and cashews, some chicken twisties - then my beautiful friend Kim brought around a doggy bag with yummy sausage rolls and savoury scones...so I scoffed a scone and THEN I had chicken and rice for dinner and more nuts!!<br />
<br />
Hello does this seem a lot of food? LMAO!!! And I bet I'll have hardly put any weight on, it's hilarious!!!!<br />
<br />
As a CFer, we are encouraged to have high fat diets. Like in our lungs, we have mucus in the rest of our organs. That includes the liver and the pancreas. This is the reason that we have to have digestive enzymes for our food, as the mucus blocks the digestive ducts, with the juices that help break down our food. Some CFers have no digestive enzymes - some do but they are blocked...so either way the digestive enzymes/medication we take is essential. For this reason also we do not absorb fat as well as other people, even with the help of the enzymes, so we have to eat a lot, and high fat. Once we start losing lung function, the need for high fat increases as we burn so much energy - the lungs are working harder, the body is working harder - from coughing, normal body functions (such as just breathing) and then of course energy expenditure from activity.<br />
<br />
When I was in my 20s I was a lot heavier, and actually had to watch my weight like everyone else....my digestive system was excellent. Because my lung function was so good, my body did not need energy to compensate. I still had enzymes though and they worked very well. For some CFers, enzymes are not enough, so they have to have intravenous food overnight as well as what they eat. They have a permanent little hole in their tummy called a PEG. A PEG stands for Per cutaneous Endoscopic Gastrostomy, and it is a feeding tube that goes into the stomach directly through the abdominal wall.<br />
<br />
I got very ill in 1999 and lost about 8 ks very quickly. That was when my CF became more obvious to people - before then it was just my continuous cough that gave me away. I never gained all the weight back and from there on had to work hard at putting on weight. When I got pneumonia twice I again lost more weight. It took me a long time to put weight back on. My goal from there (was 2004) was to try and get back to 60kgs but I have never achieved that! I generally sat on 57kgs right up until my transplant.<br />
<br />
When you getting toward end of stage CF or waiting for transplant, most CFers, well we look awful. I've seen some girls at CF clinic who look like they are knocking on death's door - very similar to anorexics who are close to dying. Not all of us of course - including myself. Which made it very deceiving to people who didn't know me, as discounting the cough and the breathing (and perhaps the pale face!) it was hard to tell there was anything wrong. <br />
<br />
Anyway, with our high fat diets, we can eat what we like!! And that includes all things naughty. Because my weight was stable I didn't have to stuff myself, but the snacks that involved chocolate and other such yummies were so much fun because you didn't get fat from them!<br />
<br />
So it's now killing me I can't eat these now!! I was lucky I generally had a very healthy diet so my main meals haven't changed but I'm craving chocolate covered things!! And nope having a full tummy isn't making the cravings go away!!<br />
<br />
<strong>MEDICATION</strong><br />
<br />
My rejection medication called tacro, has a therapeutic level which is different for every person. Even at weeks five my doctor is still trying to sort this out - it's been very tricky! Very similar to my naughty sugar levels!!<br />
<br />
<strong>BRONCH RESULTS</strong><br />
<br />
I had my checkup yesterday and received the welcome news that on a scale of 0-4 of rejection I have a big fat zero. As well as pseudomonas from my bronchial tube, I have also a fungus (no mushroom jokes please...haha!!) called aspergillus, so my doc has thrown in another medication to get rid of this. Whilst my joins are healing well, the aspergillus could cause problems if not treated.<br />
<br />
What they look at for signs of rejection, is cells clumping in a particular way, and they establish that from the tissue sample taken during the bronch. So this way they can detect it, even before you start showing symptoms.<br />
<br />
<br />
I also got to see my sternum X-ray....like my quiet clicking suggests (as opposed to the enormous clicking I was having on most movements), my sternum is a wee bit out of alignment, but it's OK, my doc says my body will fix that on it's own. The wiring has stayed in place and it is all looking good. <br />
<br />
I was also told of the price of the kryptonite last week and it's astronomical!! I was having my dressings changed and we were talking about the price of them which then led on to the kryptonite...I am very lucky!!!! I had better not write it here!!<br />
<br />
<strong>BIRTHDAY</strong><br />
<br />
Friday night I had a lovely tea at my sister's.....what a change having a birthday that I felt well at.<br />
<br />
I also had a lovely weekend catching up with friends. Ever since I was 14 I've had my high school friends over for a catch up and years later we are still doing it. Unfortunately quite a few couldn't make it due to lurgies! But I'm very grateful they have become astute at knowing when to stay away! I giggled at one of my presents being home cooked lasagna....not only did it taste wonderful but it's just such an appropriate thing I need at the moment!! lol<br />
<br />
That is all the news for now. Love Genevieve<br />
<br />
<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbjl9hkN38u37XMhXrvafh76XEQMWlNpquSPHURsvRLANdtGegWTToZzHFhIjSyVcJ5J7oJM7JaSG5TJONk0m-3vtsckxJxo8z2ZnvNy-K-Xtr_7HpUbFh_-sz19nLIl7dVa2LOK2THrSp/s1600/Birthday23rdJuly2010+010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhbjl9hkN38u37XMhXrvafh76XEQMWlNpquSPHURsvRLANdtGegWTToZzHFhIjSyVcJ5J7oJM7JaSG5TJONk0m-3vtsckxJxo8z2ZnvNy-K-Xtr_7HpUbFh_-sz19nLIl7dVa2LOK2THrSp/s320/Birthday23rdJuly2010+010.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">Birthday gal! (One on the cake for one month old lungs!)...otherwise I turned 35. :)</div><div class="separator" style="clear: both; text-align: center;">I ignored the no sugar rule that night! The pav</div><div class="separator" style="clear: both; text-align: center;">was soooooo yummy!! Om nom nom nom!!</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXnB0xSsDbp6525SfQ7fQ9YMXlpXj37dIYNCijPlmIrF4YRj-KVGV1icZ1-8Q4TRqAVQtC9P8XEx1MCorBYQai5OTa5UZeV2GZwEKyvey8evb65V138EbPW4w-wdAx3AIxlw-VopSgTovS/s1600/Birthday24rdJuly2010+005.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiXnB0xSsDbp6525SfQ7fQ9YMXlpXj37dIYNCijPlmIrF4YRj-KVGV1icZ1-8Q4TRqAVQtC9P8XEx1MCorBYQai5OTa5UZeV2GZwEKyvey8evb65V138EbPW4w-wdAx3AIxlw-VopSgTovS/s400/Birthday24rdJuly2010+005.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">My gang - James, Mel, Me, Mic, Ivo, Grace and Matty.</div><div class="separator" style="clear: both; text-align: center;"><br />
</div>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com7tag:blogger.com,1999:blog-4861210268057946738.post-73150388364477059302010-07-22T18:33:00.004+10:002010-07-27T08:27:44.124+10:00Thursday 22nd of July, 2010Goodness me, an exciting day!!<br />
<br />
When I was out of the loop, one of my dear friends started a facebook group called "Team Genevieve" to keep people updated of my progress whilst in hospital. And then one very generous man Simon came up with an idea. Kim one of the organisers has now shared me with me some of the scheming email which I'll share here.<br />
<br />
"As Gen prepares to leave Hotel de Alfred, we thought we would share a great idea that our mate Simon had. Traditionally when people are sick and unwell, we send flowers or chocolates to brighten their day and speed their recovery. We thought that, rather than adding to Gen’s compost bin that we would try for something that might help a little more.<br />
<br />
Thus, it is with great pleasure that we announce the creation of the “Gen Broom Flowers and Chocolates Fund”! Instead of sending her a lovely bunch o’ posies, the idea is to put the money you would have spent into a “pot” (read: specially opened account). Our theory is that if a few of us do this then we might have a nice amount for Gen to then put towards whatever she deems will help her recovery; be it petrol to get in and out of the Alfred, some new running shoes or competition gear for Andy or a big party to say thanks to all of us – whatever her heart desires!<br />
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We thought we would give everyone a few weeks to get organized and so have set her birthday (July 23) as a ‘deadline’ of sorts when we can hopefully do a bit of a presentation to the lady."<br />
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So it was with shock and a few tears that I was presented with my gift today and have been completely overwhelmed with it. Thankyou to each and every one of you. I am hoping to buy a new jumping saddle (haha!) for Andy, as his old jumping saddle no longer fits and it's time to be updated! So when I start jumping again (!!!) I will be able to think of you all.<br />
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I emailed all the people who contributed today, but my apologies if I have missed anyone. Thank you so much again.<br />
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It's my birthday tomorrow! Yippee!! My first birthday with my new lungs. I've always looked forward to birthdays - especially considering that each year is a blessing in terms of still BEING HERE, but this birthday will be extra extra special with everything that has happened....what a birthday gift my beautiful donor has given me. I am wondering how her family is going. I think of them a lot too. :(<br />
<br />
I was also rather overwhelmed (yes again!) when a friend of mine who is riding Andy for me while I'm out of action, told me this.<br />
<br />
"By the way, I am organising a Cystic Fibrosis Victoria fund raising day on the 5th of August at my school (Moama Anglican Grammar) – we are having a crazy hair day AND I hope you don’t mind that I got one of the student leaders to read out what you had written on day one of your blog, at assembly. It was great actually because it was the only announcement during assembly that EVERY student listened to – you could have heard a pin drop! Although they did all have a little giggle at the bit where your Mum says “stuff the cow!” I will keep you posted about how it goes and send you some crazy hair pics."<br />
<br />
I am absolutely touched by Kate's organising of this, and love that all these kids got to hear my story. Hopefully this might inspire them to become organ donors, or perhaps learn more about CF.<br />
<br />
Things have been going fine here. I had my 2nd bronchosopy yesterday and it went smoothly. They found gunk that would be expected at my stage - and I was finally able to stop IV antibiotics after being on them 2 months, and get my PICC pulled out! Yay!!<br />
<br />
I am now on inhaled tobramycin (which I couldn't handle with my old lungs, but can with these shiny babies!) and an oral antibiotic.<br />
<br />
We are still playing around with my insulin as my sugars are still being a bit naughty. I am eating so healthily too! I usually did before the LT (you should hear of some of the CF diets - they are SHOCKING!) but I have cut down a lot on my sugars - I don't even have any sugar in my tea anymore!<br />
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My exercise tolerance keeps going higher and higher and I'm still loving every minute of it!<br />
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I checked with the OT about when I can start driving (at the earliest) and it's about 6 weeks from your operation. I'm already at 4 weeks so only 2 weeks to go! Once I'm driving again, I can then get Andy to come back to his agistment in Melbourne! Yay! I won't be able to ride him til about the 2 month mark, but I will be able to lunge!! Might have to get friends to do the poo though, cause of my sternum! Haha, what a pity!!<br />
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<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGO6B7IpV-Ep_Y1ksPFvfhK6uSYxB72kzL9NstB-mPq9-10OcI2-FQxuevZdBPnlEQ7RBG-FsfZmDKVBNhTzrwENmWSk3jZZdAmp805TCl80CWLwlhinnMdMmC58BcRg3TrHi9VenMOu_-/s1600/kimgen22ndJuly2010cropped.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhGO6B7IpV-Ep_Y1ksPFvfhK6uSYxB72kzL9NstB-mPq9-10OcI2-FQxuevZdBPnlEQ7RBG-FsfZmDKVBNhTzrwENmWSk3jZZdAmp805TCl80CWLwlhinnMdMmC58BcRg3TrHi9VenMOu_-/s320/kimgen22ndJuly2010cropped.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">Visit from Kim J today and the delivery of the best present</div><div class="separator" style="clear: both; text-align: center;">since my 30th..hehehe :)</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1paBuXsYRnfKLAleMa4J8kRnWCkrc77zzyVFloIf7axrpzw9wnKijBAMYppJKxEvgDTiKF_j0TARMt7xj-aMifAj1UqdxGWopnhDFrxN-mzHrHDn1Y0KhRa0oCuys-oMc8072DyYwxLmi/s1600/aljolanigenjuly2010.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh1paBuXsYRnfKLAleMa4J8kRnWCkrc77zzyVFloIf7axrpzw9wnKijBAMYppJKxEvgDTiKF_j0TARMt7xj-aMifAj1UqdxGWopnhDFrxN-mzHrHDn1Y0KhRa0oCuys-oMc8072DyYwxLmi/s320/aljolanigenjuly2010.jpg" /></a></div><div class="separator" style="clear: both; text-align: center;">More friends visiting - Jo, Lani, Al and Gen</div><br />
When I got my PICC out yesterday, I filmed it! I know, eww! But for anyone who has an interest in anything medical, I have uploaded it for you. There is no blood, but all the same, don't watch it if you know you are squeamish. If you don't like medical shows, then you'll know not to watch this!!<br />
<br />
<object height="385" width="480"><param name="movie" value="http://www.youtube.com/v/Ym9r1iSknw8&hl=en_US&fs=1"></param><param name="allowFullScreen" value="true"></param><param name="allowscriptaccess" value="always"></param><embed src="http://www.youtube.com/v/Ym9r1iSknw8&hl=en_US&fs=1" type="application/x-shockwave-flash" allowscriptaccess="always" allowfullscreen="true" width="480" height="385"></embed></object>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com1tag:blogger.com,1999:blog-4861210268057946738.post-72016720731607362582010-07-19T07:05:00.003+10:002010-07-31T14:12:01.881+10:00My brother Mike and I<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8DVnDHkFXvraCvKALBx-HudZsX02UZ8HMVOSnJ6jVdvPDvU9Q8pHta8LjEmOzRSH_Sb5ov7ZQ9XJVMlyf4FefrrZgfH5cveuC2QKYAGX2Vspq5KFrEXf_3p5suB0-mC3Xmr2GZpihrkFD/s1600/15thJulyMikeGen+002.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" hw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEi8DVnDHkFXvraCvKALBx-HudZsX02UZ8HMVOSnJ6jVdvPDvU9Q8pHta8LjEmOzRSH_Sb5ov7ZQ9XJVMlyf4FefrrZgfH5cveuC2QKYAGX2Vspq5KFrEXf_3p5suB0-mC3Xmr2GZpihrkFD/s320/15thJulyMikeGen+002.jpg" /></a></div><br />
I was hardly able to talk at all to Mike when he visited me in ICU, so it was great to see him again and have a proper catchup!! <br />
<br />
Mike is a very cheeky fellow. Every time he visits, he turns all the pictures of my sisters around to the back, and just leaves the pics of us to the front. He waits for me to discover it after he has left. I am onto him now though and usually am able to tell him off before he leaves. You can probably see in the background some of his handy work of frames facing the wrong way!!<br />
<br />
He also hopes that my television is dusty so he can draw a face on it. But mum has been doing all the house work so there is no chance of a dusty television!! He is a very naughty boy...lol!!Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com3tag:blogger.com,1999:blog-4861210268057946738.post-52474111258466924602010-07-15T20:12:00.007+10:002010-07-18T21:34:39.571+10:00Thursday 15th of July - What's been happening since I got homeThe days fly by so quickly and I'm enjoying it all now and have been too busy to update!!<br />
<br />
It has been wonderful to be home but it also has been very busy.<br />
<br />
It's only been since last night that I have finally had an improvement in my sleep. So far I had been waking up every 2 hours because of either/and/or drugs waking me, or from having a night sweat, coughing or pain, and finding it difficult to get back to sleep. Last night I slept til 5am, fell back asleep quickly until my mum woke me up for my IV drugs. Ooooh I could have kept on sleeping!!<br />
<br />
It's tricky but I think I have some sort of routine down pat when I am home (which is Tuesday, Thursday and the weekends). I have IV antibiotic drugs which are 8am, 2pm and 8pm for one and every 36 hours for the other. The IVs take about 50 minutes to go through, by a special pump that attaches to my PICC line. <br />
<br />
I have to check my insulin before and after breakfast, before and after lunch and after tea. I set my mobile alarm to remember to check my insulin two hours after I have eaten breakfast and lunch. At the moment I do not need insulin at night. In the morning and at lunch, I give myself an injection with an insulin pen just before I eat. My blood sugars are slowly starting to stabilise.<br />
<br />
After I have done my morning IVs and had a shower, I then do my exercise. I have my own treadmill, fit ball and weights. I can't do weights yet because of my PICC and my healing sternum, but as soon as that is out and the sternum is stronger I will look forward to giving my arms a good workout!!<br />
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I do quite a lot of stepping exercises on a step at the gym - I decided I wanted one at home too, so I ordered that yesterday! Loving the retail therapy! <br />
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Lunch quickly rolls around so mum and I have a break. Then it's back onto more IVs. My physio sessions are getting less throughout the day, and the need to cough. In fact I'm hardly coughing at all now and not much flem..yay! :)<br />
<br />
Monday, Wednesdays and Fridays are gym days. There are pre and post transplant people there, with new hearts and new lungs. There are about 7 or 8 CFers with new lungs.<br />
<br />
I feel really sorry for the pre-transplant people. There is a sadness or desperation in their eyes, as they see us working out. I hope that they are able to transform their feeling into one of hope, thinking that they will hopefully be in the same position down the track. One of the things that turned me off doing pre-transplant gym, was that very reason. I didn't want to see people working out and looking fit! That was one thing I couldn't turn around to be a hopeful thing for me. Besides I was doing enough exercise at home anyway, and am lucky I have all the equipment I need. And I was motivated! No matter what!!<br />
<br />
Aside from gym, I also have blood tests to monitor one of my anti-rejection meds and my kidney function. While I'm on tobramycin (one of my antibiotics), I have to do a small blood test for that too, which I do myself. I either get the courier to pick it up, or take into the Alfred the next day.<br />
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At the moment I also have a LT checkup once a week. They are happy so far with my progress.<br />
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On Wednesdays before gym, I have education talks. Our carers also have compulsory talks to go to, as well as sitting in on ours. Topics covered include nutrition, occupational therapy, medication, rejection and infection, physiotherapy etc.<br />
<br />
This week was a patient only session with our LT counsellor, just to have a general chat about anything really! It's interesting hearing how people are going, how long they were waiting and how they have been affected by it all.<br />
<br />
One CF girl was on the dreaded Bi-pap machine 24 hours a day for 6 weeks before her lung transplant. And I was having a whinge after about 4 hours of it!! <br />
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Each day I have a district nurse from the Alfred visit to take my obs, check my wound sites and PICC dressing and share any concerns. <br />
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I keep having moments of "wow". From not having to cough half a cup of flem each morning - to being able to get up out of bed straight away. To feeling tired from lack of sleep, debted sleep and early mornings and healing, and still coping and having energy and remaining upbeat and happy..and very excited! Some nights it's hard to go to sleep, just because I am excited about everything!! Even something like keeping up with mum walking is a great thrill. She always had to let me walk in front of her, so I could set the pace - a very slow one!! And when I go to hug her, she cannot hear my crackling old lungs and rapid breathing. No noise and nice slow deep breaths to match hers.<br />
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I think of my donor daily - and I have started lighting a candle in her honour each morning, in my cute himalayan salt lamp.<br />
<br />
I have been using meditation and music to help keep me calm - was especially useful last weekend when I was feeling anxious about having an infection and about my sternum repopping!<br />
<br />
On Monday at my checkup when I was waiting, my surgeon who was there for both my LT and my sternum operations, bounced in and asked how my sternum was going. Then he said - "I had people all over Australia ringing me to ask how you went....you were my guinea pig." <br />
<br />
I'm rather perplexed as I'm about to ask what he means, when my doctor comes and explains that they used this glue call "Kryptonite" as well as wire to redo my sternum...so now I'm being called Supergirl by my friends on facebook when I reported that...even though the Krypto was not so good for Superman!! I think it's hilarious!!!<br />
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I had another sing today to see where my voice is sitting. I am a bit wobbly as the voice has more air to play with and my support system (muscles to support the air when you sing, in the abdo area) are quite weak - my breath is the least of my problems now!! It's a wonderful feeling!! So I've started doing scales to build all this up again!<br />
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I have been spending a lot of money getting new gym clothes! I get very hot when I work out so I'm having to buy proper gear to keep me cool. I don't have time to go shopping, so I'm just buying it online - saves energy and also cuts down on the possible germ factor. <br />
<br />
On Tuesday 2 separate couriers arrived at the same time....I was laughing my head off as mum had gone off to collect the first one, when the second one arrived!! I've ordered so many parcels recently, horse and for me, that the couriers would all know me well by now!!<br />
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The hospital is always very hot, and I don't imagine they will allow us to use fans to keep cool, because of the germ factor. Mum thinks it's wonderful that I am spending money on clothes instead of on my horse! Hahaha!!<br />
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The gym is very hygienic. Every time we use any of the equipment we have to use an alcohol wipe to debug it.<br />
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I'm really loving all the exercise...it's just a brilliant feeling to be doing cardiovascular exercise again and not feel breathless. Just breathless in the right way, the good way. The bad way is working and feeling like you are underwater. It's a really horrible sensation. I'm lucky that I have always loved exercise and so it is never a chore for me, most especially now!!<br />
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My mum as I knew she would be - has been absolutely sensational. She is a heaven sent angel.<br />
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I think that is all the news for now. <br />
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Love me! <br />
<br />
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</div><div class="separator" style="clear: both; text-align: center;">I have all the equipment I need set up in my room. I usually work on</div><div class="separator" style="clear: both; text-align: center;">the computer when I'm doing IV antis. Gives me the opportunity</div><div class="separator" style="clear: both; text-align: center;">to catch up on horse forums, emails and facebook! Plus look at more</div><div class="separator" style="clear: both; text-align: center;">things to buy online! hahaha!!</div><div class="separator" style="clear: both; text-align: center;"><br />
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</div><div class="separator" style="clear: both; text-align: center;">My donor's candle :)</div>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com5tag:blogger.com,1999:blog-4861210268057946738.post-62171648024689193782010-07-10T17:45:00.008+10:002010-07-18T21:28:16.859+10:00Day Eighteen - FridayIf pain was under control, LT gang said I might be able to go home still by the end of the week. I put that out of my mind, as I know how quickly things can change!<br />
<br />
I woke (well I wasn't really ever asleep!) feeling more like I did before the operation pain wise. I had a bit of coughing during the night and coped with that ok.<br />
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LT gang swing by and they are happy for me to go home since my pain is under better control now. I'm still not counting any chickens......<br />
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Pharmacy not long after come by with all my medications for going home.<br />
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HITH (hospital in the home) come by so that's when I knew I was on the home stretch!<br />
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Got that all sorted (they will visit every day that I'm not coming into the hospital - on the days that I do, swing by their office to check in , and get any more supplies if I need any) and I'm just starting to do a bit of packing and then the surgeons came back.<br />
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They redo dressing (ouch!) and I wasn't really happy baring my boobs while two students made ouch noises as well as the tape was ripped off them.<br />
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In this time, an IV is going through and the machine keeps beeping at me saying it is occluded. While the surgeon is still doing his thing, I just put the machine on silent. Occlusions (blockages) are usually easily fixed but once the surgeon has left, and I call the nurse to flush it, it will not budge. Another nurse tries and can't budge it either (usually a little clot of blood)....thankfully one of the CF coordinators happens to be walking by and comes in to say hi and sees I'm having trouble.<br />
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In the meantime one of the LT docs comes back and has a sad look and says you won't be going anywhere if that has packed it in. I just nod thinking yep I know! They have to book PICCS in advance so the likelihood of putting another one in the same day is about NIL.<br />
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But, after about 10 minutes of fiddling, breakthrough and the PICC is saved...hooray!<br />
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It's off to gym and I am not doing the normal workout but doing a study thing for the head physio so that doesn't take long and it doesn't take anything out of me.<br />
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Head back and mum is suprised that I have been given my ticket of leave out of the jail! Just have to get my PICC dressing changed and we can go.<br />
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Nurse forgets so finally at 3.30 I find her (she said she'd be back at 2 to do it) and 5 minutes later we escape.<br />
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Can you understand why hospitals for a patient can get very wearying in every layer of your being??!!<br />
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I slept more than I have since the LT surgery last night, but it's still interrupted with coughing and waking up - probably from the medication.<br />
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I've juggled the IVs, CF meds, LT meds, oral pain meds, measurement of glucose levels and insulin injections all ok today. Where do you get a life around all this I wonder!!? I had a nice workout on the treadmill too and a lovely visit from my sister, niece and my favourite little man aside from Andy....wittle Oscar!!<br />
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On Monday will have blood tests, gym, LT follow up appt, and diabetes follow up appt.<br />
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Well that is it for now<br />
<br />
xoGenevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com4tag:blogger.com,1999:blog-4861210268057946738.post-82334962154809909332010-07-10T17:29:00.008+10:002010-07-18T21:24:55.813+10:00Day Seventeen - ThursdayI can't remember who came in first - I think the surgeons came in really early to ohhh and ahh over my tiny drain that has kept me company overnight. They say they'll come again in the afternoon and if it's not draining much then they will take it out. It hasn't been doing much anyway, which is a good sign.<br />
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LT gang swing by to see how I'm doing. I'm struggling with my pain and they say the anaesthetics gang will be by shortly to discuss this. They don't want to release me until the pain is under control.<br />
<br />
I inwardly roll my eyes as I'm just downing my breakfast (and a student nurse and educational nurse are fluffing around in the background sorting out my medication which is late) and student physio wants to do exercise with me. Just as he starts, the anaesthetics gang turn up. <br />
<br />
I say the pain is worst when I try to cough - hmmm - "well you need to use the morphine more before the physio comes so your body is ready" - and I say, well aside from gym times, I never know what time the physio is coming. In the end to save me being attached to the morphine machine, and get the medication more regular, they decide to swap me over to oral pain medication.<br />
<br />
They leave, back to doing some exercise. They are trying to make small talk, obviously not picking up on any cues that I am distressed and exhausted.<br />
<br />
Just finish that and mum arrives, and I'm just telling her all about what's happened so far and the diabetes educator arrives. She is terrific and explains everything very carefully.There is still the hope that once my medication settles and goes lower, that I can stop the insulin.<br />
<br />
She leaves and I say to Mum - "You couldn't be dumb going into something like this" - she said I'm glad you can absorb it all, I lost it half way through!!" Well she is nearly 70, we'll blame it on that Mum!! Haha.<br />
<br />
Suddenly I really want to vomit - I start taking deep breaths hoping I don't cause it will muck up all the medication levels! It passes thankfully, and I ask the nurse for some nausea tablets - I had been warned the higher doses of oral pain medication (one in particular) might make me feel sick.<br />
<br />
Not long after a nurse comes by with more meds and says something very sympathetic about it being a lot to take in or something along those lines and I get the tears out for the first time! She said I will make sure no one disturbs you unless they really have to!<br />
<br />
After mum leaves I have a rest. The pain is still bad.<br />
<br />
LT gang swings by again and since the surgeons haven't been back, give the go ahead to have my drain pulled out. It doesn't hurt too much for it to be taken out.<br />
<br />
By evening my pain is finally starting to abate. <br />
<br />
Sleep is still an interrupted affair with pain medication and IVs throughout the night but at least it's more comfortable.<br />
<br />
<br />
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</div><div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqC41eaaPLCYepXE3xq0IOU_fL4iZSKOoqt6FjbHKWxnKFez8ZoB1EIthqbPztcZl2mYyOYFy-k5eENIz37VfUCtTeDjZcdRPCSGRyNt_i17sLhG0dWuJ2iYI7L1_So15UVXuq4ZuC3c7J/s1600/LT12.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" rw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiqC41eaaPLCYepXE3xq0IOU_fL4iZSKOoqt6FjbHKWxnKFez8ZoB1EIthqbPztcZl2mYyOYFy-k5eENIz37VfUCtTeDjZcdRPCSGRyNt_i17sLhG0dWuJ2iYI7L1_So15UVXuq4ZuC3c7J/s320/LT12.jpg" /></a></div>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com4tag:blogger.com,1999:blog-4861210268057946738.post-29767226510646192742010-07-10T14:55:00.007+10:002010-07-18T21:22:54.969+10:00Day Sixteen - WednesdayAll the nurses and other staff who thought I was going home on Monday keep coming in with sad faces Tuesday and Wednesday and even Thursday, and I'm like, "It's ok, I'm fine really!!!"<br />
<br />
I have been reassured that my sternum needing to be fixed is nothing that I have done (moving, coughing etc) - I've just been unlucky!!<br />
<br />
I'm told that I'm second on the list for the operation to fix my sternum, so that will mean I miss gym...excellent! Yes the physios were still keen for me to go if it didn't clash!! (ie gym in the morning, operation in the afternoon scenario!)....my anaesthetist who saw me the day before thought that was a stupid idea...he said<em> you will be worrying about the operation and you don't need that before your procedure</em>....it's always interesting hearing all their different points of view!<br />
<br />
I thought it was ridiculous too but I was prepared either way! The physios are a very determined group of people! :)<br />
<br />
I got to the theatre waiting area about 11am but it was another wait of an hour because they had lost my consent form! You wouldn't want to be panicking! Luckily I was feeling calm like I did before my LT. I signed another consent form and finally got wheeled into the operation room. They were also starting to wonder what the holdup was. I had a few more different anaesthetists working with me. Another canula was put in and then I was put to sleep.<br />
<br />
I woke up curled up in a protective ball back in recovery. I was in pain and didn't want to move a muscle!! It took a while for me to become more alert. After about an hour I got back to my room, and my sister, nephew and mum were waiting.<br />
<br />
My voice had gone a bit again but once I got back I got a bit more energy and had a good old chin wag.<br />
<br />
After they left I was very tired and started to notice how much worse the pain was this time around. Again I counted my blessings about the epidural for I already now had a great appreciation what it had done for my LT pain. I had a morphine machine that would allow me to inject a small amount of morphine every 5 minutes.<br />
<br />
During the night, it played up a lot and its beeping is very loud, my pain was constant and it was hard to move and I kept jarring my sternum when I did try to move or sit up.<br />
<br />
I wanted to cough and I was very noisy in my windpipes but it was too painful to cough.<br />
<br />
So overall a very uncomfortable night with relatively no sleep!! Again!!Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com1tag:blogger.com,1999:blog-4861210268057946738.post-47813054878052972362010-07-07T08:13:00.002+10:002010-07-07T08:15:36.861+10:00Di and I (30th June)<div class="separator" style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5wrVDWqwMplpD8SDXcDJbGsBb1bnKs44gBDp_kVYQtxzCYA2AMa_yB2HKnzHZgtG7sGH2f9P82O3e__1eXFpoVnAlPT-35zYrpquftqFDxYuOZ_12-sd9Djmo_nAl1Vtj_Szcm0PK98pq/s1600/Gen_2%2520June%252010-3.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="300" rw="true" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh5wrVDWqwMplpD8SDXcDJbGsBb1bnKs44gBDp_kVYQtxzCYA2AMa_yB2HKnzHZgtG7sGH2f9P82O3e__1eXFpoVnAlPT-35zYrpquftqFDxYuOZ_12-sd9Djmo_nAl1Vtj_Szcm0PK98pq/s400/Gen_2%2520June%252010-3.jpg" width="400" /></a></div><div class="separator" style="clear: both; text-align: center;">Please note what T-shirt says...hehehehe!!</div>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com1tag:blogger.com,1999:blog-4861210268057946738.post-64573435903152679972010-07-07T07:57:00.006+10:002010-07-18T21:20:00.669+10:00Day Fifteen - TuesdayToday 's bronchoscopy went smoothly. It was in the morning so I didn't have too much waiting around. One of the nurses attending to me beforehand told me I looked too well to have Cystic Fibrosis. Is there some special certificate I need to get? Haha!!<br />
<br />
After a nice snooze I came around - I was desaturating so back onto the oxygen, but by the time I got back to the ward, after an hour I was back up to 99% on room air....lovely!<br />
<br />
The result was that I have a lot of flem still which means I have an infection. This can happen from bugs still lurking in my own bronchial tubes. It is a very common occurrence so hopefully 2 weeks of I's will knock it on its head! Thank goodness for one reason or another, my PICC had not been taken out, so I didn't have to get another one put back in!!<br />
<br />
A very rude student doctor bowled her way in just after I got back, demanding a "talk" with me - reacting back I said actually this is not a good time, I have just had a bronchoscopy! She said <em>I am only here today,</em> <em>can I come back about about 3</em>. I said <em>yes whatever!!</em><br />
<br />
What a cow!!! I talked to my nurse and she was appalled !! So said lady got told off and she wasn't allowed to come back to have her chat!! I couldn't believe it.<br />
<br />
Mum came a while later so we had a nice few hours together.<br />
<br />
I felt very tired after she had left - I gave my 'wary not impressed' look when the student physio came in. I still had to do a few strengthening exercises so some step up and downs, squats and a few balancing/strengthening exercises. I really was not in the mood! Haha.<br />
<br />
Was planning an early night but no. I had to get MOVED!! I was then extremely cranky because I thought I would be put into a shared room. But no, THANK GOD, I was put into another single room.<br />
<br />
They had to do about 15 bed shuffles - it's to do with types of diseases, what bugs we all have - and the shifts happen as old people leave and new people arrive.<br />
<br />
So begrudgingly I packed my bags (for the 2nd time, as I had packed Monday morning to go home!!!) and the nurses helped shift everything over. But it's a nicer room with a better view at least!<br />
<br />
They had forgotten to do a follow up X-ray for my bronch, so at 11pm my nurse apologetically woke me for that. It didn't take long - back to bed. Drugs at midnight...then a few hours sleep before being woken at 6am for more oral and IV drugs fitted in before the sternum op.<br />
<br />
I'm very lucky that with new lungs, at least I am coping better with lack of sleep. If this was me in the old days, I would be beside myself by now! I am tired, but I am doing ok with it. I'm also coping with fasting better as well. Not feeling so starved each time!<br />
<br />
Well I think that is all for now.<br />
<br />
xxooGenevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com2tag:blogger.com,1999:blog-4861210268057946738.post-35187442440341242402010-07-05T14:29:00.003+10:002010-07-18T21:16:59.135+10:00Day Fourteen - MondayWell today was supposed to be the day that I was to go home but it has all changed dramatically.<br />
<br />
First of all it was because my insulin levels were still doing naughty things over the weekend, and today doses were to be changed. They did not want to send me home with things changing and therefore possible<br />
problems when I got home. I would have needed education from the diabetes educators as well - and we weren't sure we could fit that all in today.<br />
<br />
On Friday the specialist concerning this did think it would settle over the weekend - so he was very sorry that he had to disappoint me with that news. But that's fine - I felt it sensible to stay another night - I did manage to squeeze in around a 10-15 minute sulk...haha!!<br />
<br />
I have already had a practice this morning jabbing myself and it was fine! Hurts less if I do it! lol.<br />
<br />
This still doesn't mean I'm diabetic forever - it still may settle on it's own after the prednisolone doses keep coming down and the body keeps adjusting. <br />
<br />
Ok the more major concern is that my sternum has been clicking - when I cough or even if I blow my nose!<br />
<br />
I started to notice it early days and hoped it would settle but it's become more frequent.<br />
<br />
I mentioned it to my nurse yesterday, and then to the doctors this morning - so had an xray after to check. <br />
<br />
About an hour ago had the surgeon come in - and he said this happens to about 5% of patients who are pumping around very early, and coughing and huffing etc. The wires they use to connect the sternum come apart and then can't spring back.<br />
<br />
So - this is the shitty part - I have to have an operation to fix it - just the sternum part so they'll go through the same scar. It takes about half an hour. I asked do I have to have drains and he said no you shouldn't - maybe a small one.<br />
<br />
They aren't calling it a set back - just a hiccup. I think they may have been anticipating one!! One of my nurses who I've had a lot since being here said I'm the quickest one she has ever seen to recover.<br />
<br />
So they all keep apologising to me - bless them - it's disappointing for them but they are really feeling for me.<br />
<br />
They are going to do repair this Wednesday.<br />
<br />
Since I'll be here still, they are going to do my bronchoscopy tomorrow instead of Thursday, so fasting from breakfast.<br />
<br />
Today in gym I did a 20 min walk, 10 min bike ride, 10x2 squats, stretches, ham string push things, quad lift (I can't remember all the names of the equipment - I'm going to be fit fit fit when I finish!!! ) They are already working on my posture too. Cfers get very hunched over from years of coughing and not being able to breathe properly. It's nice that I will finally be able to work on this.<br />
<br />
They said I could have day leave today- so when mum comes I might get her to take me to Chapel St for some retail therapy!<br />
<br />
I'm ok - I'd rather they fix this all up now while I'm still here - rather than discover I have problems when I got home. Hopefully this will go smoothly.<br />
<br />
Just before I had one of the diabetes educators come around to show me how to use the glucose blood monitoring system - signs of having a hypo - etc. There is a lot of new things to get my head around!<br />
<br />
Thanks for all your ongoing messages of support, encouragement and love!!Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com6tag:blogger.com,1999:blog-4861210268057946738.post-6930430891928377402010-07-05T14:10:00.002+10:002010-07-10T18:13:44.618+10:00Day Thirteen - SundayPretty cruisy day<br />
<br />
I took myself off to gym and did a 30 minute walk. Felt very easy and I gradually kept increasing the speed and also included an incline - unheard for me!!! <br />
<br />
Mum and my niece visited. Had a nice rest in the afternoon.<br />
<br />
Quite uneventful! :)Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com1tag:blogger.com,1999:blog-4861210268057946738.post-1586562559302499542010-07-03T22:59:00.003+10:002010-07-18T21:12:59.817+10:00Day Twelve - SaturdayWhat a difference a bit of sleep makes!!<br />
<br />
I still wake up to cough, but nothing like it has been. It is also the first time that I feel comfortable lying down - my breathing finally feels slow and comfortable. I wake about 6am for drugs (pain medication), then sleep in until 8.30am. The nurse did pop in earlier but lets me keep sleeping...<br />
<br />
My sleep is also more restful without the vivid dreams (from drugs!)....pain is starting to lessen when I cough and when moving around. I think even due to the gym workout yesterday, the outside of my chest feels less tight.<br />
<br />
My insulin levels are still being tested. The mornings are good, but the evening ones are still going up very high. So some days are two jabs of insulin, others are one.<br />
<br />
I didn't get to shower yesterday, so next priority is that! Just hop out of the shower, and I need to be taken to X-ray of my lungs - being a weekend this doesn't take long.<br />
<br />
My dressings get a bit wet, so I get them changed and have a chance to look at my "holes"....they are healing well - the surgery cut is looking fabulous and healing beautifully.<br />
<br />
I am finally sounding better too in my lungs - think I might nearly have most of the old flem cleared.<br />
<br />
I am eating like a horse and everything takes good - but I haven't put on any weight...hahaha!! I have to be weighed every day, to check I don't put on weight quickly - putting weight on quickly is a sign of fluid buildup and therefore possible rejection. I'm very curious as to what my weight does in the next few months.<br />
<br />
Around lunchtime Mum and Dad arrive. As a precaution, Dad wears a mask as he still has a bit of congestion in his chest from his cold last week.<br />
<br />
It's great to finally catch up!<br />
<br />
After mum and dad leave, I go to rest and sleep for 2 hours. It's a really restful sleep and I wake about 5pm feeling so much better for it.<br />
<br />
After my nurse checks my insulin and gives me another jab, (still very high in the afternoon unfortunately!) I take myself to the ward gym and do a half hour walk. I take it up to 4.5kms per hour for the last 10 minutes. I haven't done that speed for probably nearly a year? I stop and I'm barely puffing.<br />
<br />
Oh NOW I am starting to really come on in leaps and bounds!! I feel very happy walking back to my room...what an amazing feeling!!<br />
<br />
I spend the rest of the time catching up on this blog. And I am finally up to date!!<br />
<br />
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</div><div class="separator" style="clear: both; text-align: center;">I will get some pain meds at midnight, and get obs, then I'll be free to sleep til 6am for my next drugs.</div>Genevievehttp://www.blogger.com/profile/15172284194568435202noreply@blogger.com3