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!!

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.


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!!  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!!

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 -

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.