Pegson In The Present . Com

Living in the Present…Aware of the Future…

Return Blog. Winter has been tough

Hey Guys.

Well Winter is just about over. And While winter is usually a tough time of year. This year’s winter has been especially tough. It’s been one of those laborious Cystic fibrosis Winters, where you simply struggle for the entire 3 months.
I made the decision that I was going to stop attending pulmonary rehab during winter simply because last year during the winter months I seemed to pick up every man and his dogs cold.  So my thinking was that by avoiding a packed room of Lung Diseased, coughing, near passing out people trying to work out I might lesson the Chance of picking up cold after cold. And it seems to have worked, however the down side is that My fitness level has flown out the window.
I had my 6 month check-up at the transplant clinic last week and everything went partially smoothly. Does that make sense* My Transplant doctor seems to think everything is stable so  at the moment there is no need to have my position on the transplant list activated yet. Knock on wood.
About 6 months ago aspergillus scanty popped up in my sputum. Now It has appeared before but a long time ago. Around the time I was sit nude in the sand pit with my nebulizer pumping away… Anyway at the time my CF doctor who always seems to be overseas when something out of the ordinary happens was at a conference in south Korea so the Head of the respiratory department Dr Hensley was treating me and he decided that a 2 week course of Sporanox and Prednisone would get rid of the aspergillus.
Now there was some slight conjecture over treatment since I have liver disease and also prednisone is a steroid and its not good for bones especially leading up to transplant, but anyway we decided it was best to treat my lungs since I was feeling low on energy and I didn’t want to risk my lungs any further since they were fairly stable at the time.
So ten days went by and I was feeling better but I was also looking very bloated from the prednisone but that’s all normal.
Anyway my usual CF doctor was back in the country strutting his stuff and he wanted me to stop treatment straight away as he was more concerned about not aggregating my liver disease rather than treating my lungs for the aspergillus.
So Like a dumb-ass patient I took his advice of just playing it by ear and watching to make sure the aspergillus doesnt get out of control even though deep down in the depths of my green chunky mucus I knew better.
So over the past 6 or so months I have had a few sputum’s tests. and a couple came back with aspergillus as scanty and one even came back as not there. So things seemed to be going ok.
Well anyway when I saw my Transplant Doctor last week for my 6 month check up, he noticed the aspergillus growth while reading through the notes I had bought him and he noticed we didnt treat to arradicate it. And boy was he concerned. “WTf is this Arron…Are you kidding me….your life is ruined…oh Christ my reputation as doctor is ruined…where’s a syringe full of air to inject into my aorta” nah not that bad. But he was pissed.
I was shocked at how concerned he was. Now silly me, and I know better than this..I had taken the word of my usual CF Doctor that aspigilus while it was’nt out of hand was not a big problem, but what I wasnt told is that aspergillus can be a huge problem for future transplant.
Now aspergillus doesnt rule you out of transplant but it does increase the risk of rejection and other issues hughly, greatly, heaps, loads, a god damn lot…you get the drift..
One of the major factors of aspergillus in lung transplants is it can get into the stiched joins of the new lungs and actually cause them to pull apart over time. Sitting there in the tranpslant appointment hearing this, I near pumped a man turd into my pants as I had visions of leprosy of the lungs with bits and pieces falling off. Seriously I did.
Finding out this news really has pissed me off. Because I feel I have, well I know I have been let down by my local CF team. I can understand that the treatment of aspergillus can be harmful to the liver and yes I do have liver disease. But My life now is about living as long as possible with these lungs and liver and than having myself positioned the best I can be for a successful transplant and just like my site address says and I have spoken about in the past is that I believe treating and issue in the present and not worrying about the ifs and buts of what could or might happen down the track.
So my take on the situation is treat the aspergillus now, while im still stable health wise as aspergillus is an opportunist little c#nt and really can get out of control as your health gets worse and your immune system gets weaker. And if some liver disease is caused well thats not great but so be it as the ultimate goal either way is transplant and I want to have the best chance of that being a success. Now come out with leppers lung.
So I have an appointment this months at 1 pm to see my Local CF doctor, to discuss treatment and also to discuss a problem I have been experiencing for the past 12 weeks. Which is a pain in my chest on the left side. Kinda under the heart.
At first I thought I was tapping out to a heart attack or maybe a pulled muscle caused by anyone of numerous reasons (coughing, boxing bag etc etc) but after about 2 months and with the pain still the same I decided to speak to my CF team.  I know I should of done it early. But If I jumped on every pain and ache I was need a trundle bed rolled out 24/7 at the hospital.
I had an x-ray and it came back normal. So no extra lung scarring and no fractures of the rib or anything. So now we have to move on to more testing. I kinda wished it was a cracked ribbed as its simple and not to bad of an issues unlike oesophageal varisee’s* and chest pain which can be a sign of the condition worsening.
Anyway That about it for this return entry, I could keep rambling about another 100 things. Like this weird shaky, palpitation like feeling I have been getting through my back and torso sometimes at the same time I get this dull chest pain.
Christ I’m like a still operational World War 1 Zeppelin…Battered and Fucked.


August 13, 2010 Posted by | All Posts, Daily Rants | 2 Comments