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.


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!


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!!


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!!


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!!


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.


  1. Me again Gen,
    After reading all this I wanted to say that the prednisone can cause the yeasty type infections. It also raises blood sugars astronomically. It will also eat up your bones but I am quite aware your doctors know this. As soon as you get off the prednisone things will go so much better. Oh and the sleeping disorder...yep you guessed it prednisone can cause that as well. So looks like you have several things making the sleep difficult. I know how you feel, with the crappy sleep.
    I am amazed at all your progress....you go girl. You are amazing....:)

  2. Thanks Tammy. I'm already on a probiotic :)....thankfully my bones are in fantastic shape and above average too in their health!! Doc hoping to lower pred soon but has to wait til the tacro is right....I never go off the pred though, it's for life....

  3. Hey, I had have cf and had my transplant one day after yours. I am feeling pretty great most of the time and like you could probably eat 7k cal a day but alas my blood sugars would be crazy so trying to get that straightened out so I can gain weight, 5-9 and 122 lbs now. I have trouble sleeping, although not terrible, some night sweats and lots of trouble getting my gengraf dose correct, probably due to the cf malabsorption issues. I have had several bronchs each getting better but my first bronch to check for rejection will be next week. Take care, John

  4. Hi John - thanks for your post...I am still catching up but just got your message re FB too.

    Interesting about your night sweats too as your the first I've heard that talks about them - they are driving me nuts!

    See you on FB and great to hear you are generally dong great. :)

  5. doing even ! lol!!! dong dong...lol

  6. I have been looking for you on FB and can't find you....

  7. I'm hidden that's why! I'll look for you...