Saturday, August 13, 2011

Honey, where's the Flem?

Thursday 11th

Not much sleep again.

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.

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.

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.

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.
One of the physios would talk me through purse lip breathing, which helps to relax the airways and open them again.

I got the tears out after about 3 rounds of this – mostly from exhaustion I think!

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.

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.

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!!

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.

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.

Friday 12th

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!

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.

I managed to get some sleep – still interrupted and not deep, but it was sleep!

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

You breathe in that joy stuff for about 15 minutes.

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)…

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.

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!)

Well I told ya so - I say in my head!! Lol

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.

Later on the docs said they would try again at the Alfred Centre on Tuesday.

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.

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.

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.

Saturday 13th

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!

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.

My breathing felt pretty crap though, so I got on the nebuliser straight away and did some Bubble Pep.

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.

I asked is it normal for healing to be this slow and she said most definitely and particularly being immuno suppressed.

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!!

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.

I’d never met him before but he was very nice, and we did some breath work.

I still got pretty much nada from my lungs, but I felt more comfortable.

I was to do that again this evening.

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.

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!

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.

Bye for now Love Genevieve

















Wednesday, August 10, 2011

How Things Can Turn To Shit Overnight

Hello everyone,

After such a jubilant previous post, this couldn't be any more different!

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.

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. 

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.

I stopped by morning but slept for most of the day. Everyone else was fine. It was becoming obvious I was too suppressed!

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). 

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.

Fairly quickly my exercise tolerance was going down - I was having difficulty doing my usual
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.

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.

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.

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.

I was given inhaled tobra, and was pretty confident that was all I would need to get back on track.

LT nurses rang me the next day to say my liver function was even worse so I had to go back in again
to do more blood tests.  Had to rule out hepatitis and such even though it was highly unlikely.  They'd be
in touch if things were worse or if they found anything.

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!!

I heard nothing from the hossy re my liver, so I took that as good news that things were improving there.

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.

Saturday the 6th I woke with a temperature - I had been having sweats and chills all night and dreamed
of drinking lots of water. I went to the toilet and was having trouble breathing. 

I rang the LT registrar and she said if I worsen, come in, or if I have another temperature overnight, to come in.

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.

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.

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.

EMERGENCY EMERGENCY

I got seen pretty quickly because of the LT registrar contacting the department before I arrived.

I've mostly ended up in a corridor because of it being so busy on previous occasions, but luckily
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. 

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!

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.

I spent the night there.

Monday 8th of August

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.

I have earplugs and an eyemask, so I'm well and truly armed for noise and light these days.

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!!

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!!

I eventually got a bed and was much more confortable especially my bum...haha!!

I saw the registrars but they didn't say much. Jo my sister came in again to spend the day with me.

Dietician visited, then physio.

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.

The physio had asked would I mind two work experience students watching - I said as long as they don't
want to ask me anything (cause I couldn't be bothered, too tired!!) and she said no, they are just here to watch.

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!!

The girl was very embarrassed poor love!!

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).

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!!

Late that night I finally reached my room and felt a lot more confortable with my own toilet and such.

The remaining mucus I had was drying up very quickly from the antis.

Tuesday 9th of August

Didn't get much sleep due to one the IV's being at 12 midnight and having another fever at about 3am.

My breathing was terrible - was still an effort to just go to the loo on oxygen.

The marvellous Mator arrived (Mum) and I got her to help me have a shower.

My breathing seemed better in the afternoon.

Wednesday 10th

Again not much sleep from another mild fever and an increased dose of prednisolone creating insomnia.

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!!

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.

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.

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.

Well that is it for now -

Love Genevieve

















Friday, July 8, 2011

July Checkup

Was 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!

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.

Sunday, June 26, 2011

Anniversary Dinner

My 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.

I had been quite emotional leading up the day, but on the actual day I was fine. :)

My sister and her daughter made me a wonderful Lung Cake!! It looked and tasted wonderful!!



Monday, June 13, 2011

Andy and Gen, Bealiba HRCAV Show. Feb 2011


June 2011

Ooopsy! I had meant to be a bit more regular with my writing, but time does fly when you're having fun!

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. :)

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. 

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.

In Australia we are now in the full swing of Winter - the days are often cold. 

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.

Checkups and Bronchs.

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. :)

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!

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 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. 

This is from when I had one back in 2004.




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! 

I still have diabetes and am taking a fair bit of insulin but I have pretty good control of it all now. 

Horseying Around

Well haven't Andy and I been having fun!

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!!

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!

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)!!

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!

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!!



Photo by Sam Feldtmann - Website - www.swfphotography.com

Kyabram P.C Horse Trials, May 2011

 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!

Other Exercise

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!!

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.

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!!

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!!

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! 

I've had a few quiet weeks with feeling unwell from my flu shot but so far I haven't caught anything too nasty.

It is with much gratitude that I have my lovely strong body with it's beautiful lungs as I approach my 1st year anniversary.

I hope this finds you all well.  Love Genevieve




Gen and Andy @ the TTT Showing Championships. January 2011
 

Andy's first ever beach outing. Feb 2011


Gen with her sister's Jo and Sue, celebrating Jo's birthday. June 2011





Thursday, May 5, 2011

"Every Precious Breath" - New Book by Tom Valenta

Tom Valenta has two grandsons with Cystic Fibrosis. He has written about them in his new book, along
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.

https://www.cysticfibrosis.org.au/viewproduct.php?id=487

Wednesday, December 22, 2010

6 Months Post LT

Hi everyone,

6 months has gone slowly and also quickly. 

Looking back I can honestly say the first 4 months or so were pretty awful. 

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.

But has it been worth it? Of course it has.  :)

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!!

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.....:)) 

I do count my blessings I did not have diabetes beforehand - many CFers do, and it makes management of their CF all the harder.

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.

- 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...

- lots of blond hair on my face - if I look like a gorilla in the next few years, don't be alarmed....

- bruise easily and take a long time to fade

- cramps in legs and feet

- still got the shakes from the tacro but not as bad and not all the time

- occasional swelling in legs and feet

- 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.

- can't stand cold things to eat or drink. My teeth were never sensitive before the LT.

- still got the pred belly, double chin and puffer fish face, but not as bad as it was

- still have achy knee splints but much better than they were

- don't like bright light - rarely wore sunglasses, now wear them fairly regularly

- diabetes of course

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!!

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!!

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!

We are still juggling the immuno suppressant medications in order to help my kidneys which are still not liking the tacro much.

Horseying Around

November 28th marked the exciting occasion of my first show.  My last one was around September, 2008. 

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!!

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!!

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.

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.

When we went home after that event, I said to mum I don't think I can come again tomorrow, I'm worn out
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.

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.

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!

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. 


Picture of Gen and Andy - The 2010 Victorian All Welsh Show
Picture by Raelene Milvain

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". 

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.

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. 

Much love and blessings to you all for a safe and healthy Christmas.

If I'm fat after Christmas, it's because I ate all the of the gingerbread house!!

Love Genevieve

Saturday, October 9, 2010

Saturday 9th October, Week 15 Post Transplant.

Gym

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.

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!!

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!

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.

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.



Gen and Ranj - Ranj helped me get up for the first time after my operation.

Gen, Vedad (physio) and fellow transplant recipient, Chris.

Our wonderful Lou, Gen and Chris.



Chris and Gen holding the plank!


Phew - did it!


This lovely lady and I suspect we have the same donor (she received a heart).
Same day, near the same time op, and same blood group.

Horse Riding

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.


Gen and Andy - first ride.

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. 

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!!

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. 

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!

This is a video of Andy and I on our fourth ride. It's taken at my agistment property, near the lovely Dandenongs.



Mum

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.

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. 

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!

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! :)

Other bits and bobs

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!!

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!

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.

Bye for now
Love Genevieve

Friday, September 10, 2010

Friday 10th September - Week 11 Post LT

Lung Function

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...:)

Overall

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".

My splints near my knees have nearly healed and I will hopefully attempt to start jogging again next week.

Just a short update for this week!

Until next time!!

Friday, September 3, 2010

Friday 3rd September - Week 10 Post LT

Someone put me down!!  Yep I went lame this week. Haha....

Exercise

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.

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....:-(

Reflux

Because of previous liver and bowel issues, I see a gastroenterologist every 6 months.

Everything was good, but he suggested cutting down the dose of Nexium I was on - long term use can create problems.

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.

Checkup

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!

Diabetes

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.

The levels also have been higher because of slowing down on my exercise.  Everything is so linked!!

Sleeping

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.  

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

Riding

Counting down til the "moment"...!!!

Gym

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!!

Driving

Been doing a lot of driving this week and it's an absolute luxury to have this independance back!!

Think that's all for now

Til next time, thoiya later!!

:)

Monday, August 30, 2010

Pictures of Andy and I through the years

Andy

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.

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.

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! :)

Andy loves people and other animals and it's just a joy being with this beautiful animal! :)

A reader has requested Andy pics, so how can I not oblige?  :)

First Gymkhana 1989


Jumping in Pony Club, 1991


1994, Echuca Show


Kyabram Gymkhana - Mum and us




More jumping - Pony Club Days!


1996

2005 TTT HRCAV Showing Championships


2007 Mentone CT Comp day. Brother Mike, Andy and I


2006 HRCAV TTT Showing Championships


Andy and Gen working out at Andy's agistment, 2004 ( I know, the hands, such a bad habit of mine!)

2008 Melbourne Royal Show

Dear friend Mel competing on Andy at the 2007 TTT HRCAV Championships.


2002 HRCAV Combined Training Championships. Won the teams and my section!



Giving Poppy Mason a ride!

Hanging out in Bamawm with Grandma and Grandad. January 2006


2008 Doongala HRCAV Horse Show. Photo taken by Julie Wilson.
Julie's website is http://www.jwep.net/

Barastoc Show, 2008
Andy meets himself - Sculpture of Andy by Karen Grigson.

Gen and Andy, May 2009






At mum and dads swimming in the channel. Gen, Andy, Oscar the dog and niece Stephy. Christmas 2009



Melanie Wu riding Andy in the Seniors Class at Barastoc 2010
Photo by Suzanne Coutanceau

Saturday, August 28, 2010

Week 9 - 28th of August

I've reached a few milestones this past week.

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.

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. :)

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.

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!!

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.

Other issues

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.

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. 

Bronch

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.

Alternative therapies

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.

Diabetes

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....

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   http://www.naturallysweet.com.au/g/176/about-xylitol.html

Transplant Buddies

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

http://www.transplantbuddies.org/

Until next time!! 

:)

Wednesday, August 11, 2010

Friday the 12th of August - 7 weeks post transplant.

Gidday everyone,

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.

Lung function

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. 

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.

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.

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. 

Jogging

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.  

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.

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.

Stomach

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.

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. 

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.

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.

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!

Singing

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.

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!!

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!

Mum had a fabulous time at her party - we all did...great times! :)

Diabetes

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.

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
food.
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. 

Goals

Our physio got us to write down our goals recently. 

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.  

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.

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.

Muscles

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.

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! 

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!!

Carer

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. 

Crazy Hair Day

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....

Thankyou to all who particpated in that to help CF. :)







                                                                         Mum and I at her party.

Tuesday, July 27, 2010

Tuesday 27th July

Well 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.

SLEEPING

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. 

Hopefully this will settle down in the up and coming weeks! Days would be better!!

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.

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.

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!

FOOD GLORIOUS FOOD!!

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!

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.

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!!

Hello does this seem a lot of food? LMAO!!! And I bet I'll have hardly put any weight on, it's hilarious!!!!

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.

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.

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.

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. 

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!

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!!

MEDICATION

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!!

BRONCH RESULTS

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.

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.


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.

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!!

BIRTHDAY

Friday night I had a lovely tea at my sister's.....what a change having a birthday that I felt well at.

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

That is all the news for now. Love Genevieve

Birthday gal! (One on the cake for one month old lungs!)...otherwise I turned 35. :)
I ignored the no sugar rule that night! The pav
was soooooo yummy!! Om nom nom nom!!


My gang - James, Mel, Me, Mic, Ivo, Grace and Matty.