Update; 11.30 next morning. No further bleeding had a relatively good night sleep considering the drama that went on. I basically had a shower. As I go very cold during bleeds. Propped my bed up with pillows so my head was much higher than my heart. I find this lesson chances of reocirrent as the bloods not pooling up stars in your lungs and putting them under pressure.
I guess today is going to be a day where I walk around on egg shells.

Update: midnight Saturday. So it’s about 2 days since bleed. And knock on wood there hasn’t been anymore. Although I have felt very crook. I did some light exercise but I was pretty puffed plus the mental aspect of worry about a bleed has made me puffed. I described this to my mum by say you know where you have a stiff neck your body starts moving different even without trying well that’s the same for me with bleeds it doesn’t matter how much I want to just carry on and say jump back into exercise. It won’t happen my body shuts down and somehow makes sure I’m puffed no matter what I do. Even if I don’t have a chest infection. U guess just like stopping head movement with a stiff neck your body prevents excessive lung movement after bleeds.
That was a big muddle of words but I’m theorizing out loud.

Any catch ya. Below is a couple pics I took.

So I thought I would just to a partial update of what’s been happening.

I have going through the on going tests and clinics testing, checking to see if it’s time to be listed for transplant. As of now I’m still tracking ok.

My weight sky rocketed to 95 kilos around 3 months. I was feeling breathless well more than usual plus none of my clothes fitted properly. I kinda looked like a fat dancer in tights.

So I started exercising smartly. And eating less. It worked I’m now down to 86 kilos which is in the right direction. Im hoping to get around 82 kilos. I still need some extra beef for the sick weeks.

I went to ufc 127 at acre arena in Sydney a couple months back. It was a huge under taking taking my treatment on the road over night. I’m always nervous when im on the road out of my safety net. It was a great event and I’m glad I did the work the weeks before to get my health to a level where I could handle a hectic very active weekend away on a lesser than usual treatment schedule.

After my successful trip away I have got tickets to the state of origin rugby league match. It’s a huge match state vs state usually a 90 thousand crowd in attendance. It’s game 2 out of three. So I’m nervous but excited.

Mothers day is coming up this Sunday. I got my mum something practical this year. I got her new home phone system. 3 phones. Wireless. The old set is like 1906 years old. So it was time. And she is always squawking about the crackling reception.

Back onto health right at this moment I’m in that between limbo. Not at my best but not at my worst.

So that’s about it. I’m typing this out on me iPhone so if it’s shonky well sue apple.

Pegson.

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.

Its been ages since I last made a post. I guess there are a few reasons. I got a bit crook. a bit lazy and a bit overwhelmed by talking about Cystic Fibrosis in so much depth as it hit home with a real reality check….or maybe like I said, I might just of been lazy..

Im going to begin blogging again. But not so hardcore this time. I’m going to keep it relaxed.

I have a few things to write up about the last 3 months while I have been away from the blogging stratosphere.

So stay tuned as my first real blog post  will be about how I revisit using Colistin and received surprising results.

Read up on Colistin in the mean time http://en.wikipedia.org/wiki/Colistin

PeGsOn

If you like you vegies this is going to be easy but if not well tough titties…

Scientists at the University of Pennsylvania School of Medicine discovered that a dietary antioxidant found in such vegetables as broccoli and cauliflower protects cells from damage caused by chemicals generated during the body’s inflammatory response to infection and injury.

Research has showed that the antioxidant thiocyanate normally existing in the body protects lung cells from injuries caused by accumulations of hydrogen peroxide and hypochlorite, the active ingredient in household bleach. These potentially harmful chemicals are made by the body as a reaction to infection and injury. In addition, thiocyanate also protects cells from hypochlorite produced in reactions involving MPO, an enzyme released from germ-fighting white blood cells during inflammation

Lung injuries inflicted by excessive inflammation and recurring infection cause about ninety percent of CF patients’ symptoms and mortality. Although known as a chloride channel, CFTR also conducts thiocyanate ions, important because, in several ways, they can limit potentially harmful accumulations of hydrogen peroxide and hypochlorite, chemicals produced by the body to fight germs.

>>Where to find thiocyanates naturally? Cruciferous vegetables (broccoli, cabbage, cauliflower, turnip)

I’m not exactly sure if a supplement exists out there in the form of a tablet or powder so you guys might just have to start eating more veggies……

PeGsOn

pegson1986@hotmail.com

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PeGsOn

pegson1986@hotmail.com

UBEAUTY

Well…..Its Day 14 Monday morning so all in al I have been in Hospital for exactly 2 weeks and I want to go home so bad…I still need antibiotics after my wisdom teeth surgery flared up a chest infection but I feel I have done all the healing that I’m possibly going to be able to do laying in a Hospital bed…

This bloody niggly Tickly cough  I’ve had for the past 4 days  is still with me, and I’m at a lost to what’s causing this darn thing hopefully not some new kind of bug… The Niggly Tickly cough itself is not overly chesty but its really dry and every time I cough I feel like both my lungs and my ‘cheeks full of stitches’ are going to explode….

So Right now its about 9 am now and I have them putting through my 10 am Ceftazadime a bit earlier so maybe I can make my 9.30 Pulmonary Rehab class or maybe the tail end if it.

At this stage if all goes to plan sometime today I will be going home. The Doctors are charting up the meds I’m to go home with, whether or not they chart the right stuff is another matter as I have been under so many doctors this admission its been quite hard to get anything done in a timely matter or with any uniform, although one of the head doctors understudies Ella has been awesome.…I really need to look at changing Specialists at my CF clinic  because having a Doctor that’s constantly at conferences overseas (Korea this week) is not helping me get things done regarding my health..

So soon I will start packing up my room in hope that I will be going home, I can’t wait for my own bed, my own shower, my normal internet so I don’t have to be careful with everything I download….mmmmmmm Unlimited download garh..

Just after I wrote the above paragraph the doctors came in and we ran through everything. So It looks like I will be going home on Nebulised Tobramycin, Oral Cipro and pushingCeftazadime 2 gram twice a day via IV.

I still have to get my port deceased and recessed because it’s been a week old..so If I’m out of here by 4pm this arvo I’m gonna be doing well.

Looks like I probably won’t get to rehab now since everything is starting to come together quickly…..

Well it now 9.45am and I bet this blog has been really bloody exciting for you guys but at least you have been privy to the information as it happen because Pegson in the present is live on the air…

EDIT: I thought I would just update you..Got to Pulmonary Rehab, Absolutely knackered could barely do anything not sure if it was lung function or lack of energy or even fitness…pushed on through…Got my CF nurse John to do a lung function and it came back 48 percent. So I held me own during the hospital admission…

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PeGsOn
Pegson1986@hotmail.com