Pegson In The Present . Com

Living in the Present…Aware of the Future…

Bleed just hit me. Updated

Was just getting to lay down and go to bed and my lungs started bleeding. First time of considerable volume in about 2 years.
If you remember previous blogs I had very bad bleeds between 2002 and 2008 until I had my lungs embolised* combined with starting a continued use of nebulised antibiotics. Colistin and Tobi alternated month to month.
So I’m sitting real still. Not coughing. Shallow breathing hoping that the area bleeding is healing and clotting up.
I’m kind if in a state of dock at the moment. It’s always a possibility but I never thinks it going to happen again.
It’s strange it happens while im sitting in bed and not when I was belted the boxing bag for cardo 7 hours before. You can never really predict a bleed.
Hopefully it does worsen or come back before I don’t want an ER visit.

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.

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May 12, 2011 Posted by | Daily Rants | | Leave a comment

Winter rolling in. Weather changes

Winter is really starting to roll in. I’m not sure about others but regular weather changes really play havoc with my health.
I like weather to stay constant, hot or cold, windy or wet it doesn’t bother as long as it’s not changing day to day.
Somedays weather change can reduce me to a state where I feel like I’m in the middle of a massive chest infection thats already gone full blown.
Since I’m a mainly round the house person these days I tend to sleep with my fan n air conditioner on as I feel I cope better through the night and ultimately wake up feeling better when I have cold air rotating around. Of course if you do this you have to always sleep under a doona. I hear from other cfs and in my opinion they have this awful routine of sleeping without a shirt on. It’s very important to keep your chest warm. Granted if its 1400 degrees sleep naked for all I care. Make sure the webcam is off though.
My best friends 24 birthday is coming up so I’m finalizing his prezzy. I always look to give really fun buy practical gifts with a bit of thought. So I think this year I have out done myself.
I’m going to start blogging a little more frequently from now on but not so serious like I was doing a year ago. It was almost a full time job reading up about medical literature just to make sure I didn’t mistakenly tell some to drink petrol with syringes as ice cubes.

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

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May 12, 2011 Posted by | Daily Rants | | Leave a comment

Hey

Hey guys it’s been ages since I last blogged. I haven’t been busy at all. The truth is I think I just got over blogging. I probably over did it. Diving daily into depths of life and death.

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.

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May 6, 2011 Posted by | Daily Rants | Leave a comment

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

Its been a While!

Hey Guys.

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

April 28, 2010 Posted by | All Posts, Daily Rants | 1 Comment

Broccoli and Cabbage help protect lungs?

Hey Guys…Treatment iv 3 times a day along with nebs 3 times a day is bloody tough ..But more on that later..

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

November 18, 2009 Posted by | All Posts, Articles | , , , , | 6 Comments

First Day Back at Home

FirstDay back at home after 2 weeks in the hole.

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PeGsOn

pegson1986@hotmail.com

November 16, 2009 Posted by | All Posts | , , , , , | 2 Comments

Hospital Stay Day 12 – Sleep, Hartman’s Solution, Chesty, Out and About, Going Home?

Hey Guys..

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Pegonator

So I thought I would do a quick Hospital Stay Day 12 Update since I haven’t been able to or had the time to get round to making a Video Blog to cover the Day, which in the most part has been uneventful.

So today has been a bit difficult and I have not improved so much over the last 24 compared to the previous few days…

My main issue that finally caught up with me today was lack of sleep….severe lack of sleep.12 Days and an average of 3 hours asleep is not enough for me not even close.. While healthy I need a good regular 10 hours of sleep so when crook I need around 12..

I was that tired I was delirious. I even started feeling short of breath and like I was drugged on 50 Temazepam.. So I tried sleeping few the day but was being constantly woken up due to normal hospital activities. I did skip going to the gym and my morning physio which is not so great but I couldn’t keep my eyes open let alone do a gym session..

I really think hospitals need to reassess patient care…there are 4 things we cant survive without: Oxygen, Water, Food and sleep and the Hospital has the first 3 down but constantly fail with allowing us patients to get adequate sleep.

When I think about it I could survive a month without meds I was be brutality ill but I would Survive but a month without sleep my brain would be fried and in other terms 6 Feet under…mmmmmm great TV series

The perfect example of this is in my treatment schedule that has been worked out this admission where 6 out of 9 daily drug doses are in prime sleeping time of 8pm to 8am…meaning at best I get broken sleep when most of you all would be sound asleep getting big solid chunks of precious delicious sleep.

Also for some bloody unknown reason a random registrar who was doing the re charts for my ward decided to chart me for a bag of Hartman’s solution instead of normal saline.. The Hartman’s solution has few extra additives and what not. That’s not the problem the problem is some drugs are not compatible with the Hartman’s Solution and than the some that are compatible are not known to the nurses or in the drug books has unknown so to be safe they piggyback my line….So When it comes time for a treatment, they stop the Hartman’s solution…Flush the line with saline than place another line onto the first line with the treatment running through saline…Once the treatment is through I’m reverted back to the Hartman’s solution..

All this chopping and changing makes it impossible to sleep during an already difficult treatment schedule…

And before you say maybe I needed it, well of course if I needed it I wouldn’t be complaining but when one of the Doctors under my specialist popped her head I asked her about it and she had no idea and said I didn’t need it and re charted the usual run of the mil saline..

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As for my Wisdom teeth surgery. The stitches have all come out and there is tons of loose flesh. I have been able to eat more normal foods, even getting some KFC popcorn chicken down and a Frozen coke for lunch and a Micro-waved Chicken and Potato meal the tea.

Also The pain has really subsided. It still hits hard and will become just as painful but its been happening less frequently over the last 24 hours, which has been seen my by pain meds consumption, down to 3 pain killers compared to 7 the 24 hours before..Mmmmm Endone sandwich….Codeine Milkshake …Om nom nom nom nom.

Lung wise I’m a bit chesty, but I prefer that since it means I can at the very least clear the mucus whereas before I was so tight I couldn’t get anything up…I still coughed up a few pieces of mucus that contained blood. While this is not abnormal for me over last 5 years, its abnormal for me over the last 3 months where I have had no bleeds. So its something I have to be cautious of because my Bleeding goes like this..Gets infection – No Bleeds, Treats infection – No Bleeds, Feeling healthy goes does some fun stuff – Massive Bleed. Its like the infection does the damage but the Bleeding does not occur because while your sick and recovering from the infection your not that active so the damage is not exploited until your well when you go out to “play”…So that’s one reason why I want to hit the Hospital Gym a few more times before going home since If there is a little underlying possible Bleeding issue that has been caused I want to exploit the problem while in hospital not when I get home…

Speaking of going home it is still looking like Monday arvo or early Tuesday morning. Well as long as I keep improving and don’t have any set backs..

However the program I talked about in last night’s Video Blog called “out and about“…Well they don’t have a place on their program for another 2 weeks so It looks like I will have to go the IV’s at home alone…Which I’m ok with. I did it for ages between 14 and 18 but since than I have resounded well to nebs at home so haven’t ventured down the home IV road for nearly 5 years.

So not being on the ’out and about” programs means I won’t have an IV machine which the “out and about team” call a Cad Pump to feed Ceftazadime through, which means I have to gravity feed the IV’s and be constantly on alert to stop the Ceftazadime running through and than feeling me full of air…or the other option which saves cost of having a full line set up is to push the drug over half an hour…

I also Have to be careful with the hep saline locks of my Port. As you guys know who have Port-O-Cath’s you have to close your Port properly usually with a saline flush, followed by a hep saline lock….So considering I have a treatment at home every 8 hours It will mean I’m going to need to hep saline lock the Port line 3 times. Now the issue is hep saline is a blood thinner and I have blood count issues which gave me huge grief during surgery and they won‘t even let me have ibuprofen or aspirin…So considering Hep Saline is much more potent and works directly on the blood to thin it out, means that it’s something me and the team are still working on..If you have any ideas send em to me..my port is 6 years old so it does need some care…

Any way its 4 am now I’m gonna try and go back to bed, So far I have slept 7 hours from 6pm to 1am…Got up due to missing tea had a bite to eat, watched a bit of the TV show the Mentalist, Busted a few zits, perved on the eating disorder girls across the corridor. Mmmmmm ribcage and exposed pelvic bone. So now I thinks it’s a good time to have an Endone since the pain is just beginning to flare up and I don’t want to wake up mid morning and be in excorticating pain since that means I won’t be productive for physio…

So good night and please leave me some comments people…I love the comments I get but I reckon I’m the least commented CF’er blog in history…is that saying something about the quality of my writing skills. Poor No Comments PeGsOn lMAO…

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VERY IMPORTANT QUESTION

Oh and here is a question its very important…
Next Saturday so 7 days away. I have been invited to a 21st fancy dress party…The theme is TV, Movie’s or Musical Characters. Now also take into account I will have my port accessed which is upper right chest near collar bone. So I don’t want that to be visible, also its just before summer and regularly 95 Fahrenheit or 35 Celsius so It needs to be cool but with coverage for my Port and body not going naked like an Egyptian-…So I need costume Suggestions, Also don’t limit your suggestions to single characters as I can go as a Duo since I have a mate who is keen to do a Duo if we get a good enough idea. I have a week to put it together, money is not an issue….



Thanks Guys and Girls…Luv ya’s

PeGsOn

pegson1986@hotmail.com

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November 13, 2009 Posted by | All Posts, Hospital Stays | , , , , , | 13 Comments

What Dat: Guess What Today’s Lunch is? the taste made me spew

SUBMIT YOUR GUESS CLICK HERE PLEASEPIC_0374

What is this meal....Looks ok but it made me gag than hurl

ANSWER – in 24 hours time…

SUBMIT YOUR GUESS CLICK HERE PLEASE

PeGsOn

pegson1986@homail.com / twitter.com/pegson / facebook.com/arronpegg / youtube.com/pegson123

November 12, 2009 Posted by | All Posts, Hospital Stays, What dat? | , , , , , , | 2 Comments

Hospital stay Day 10 – How am I tracking?

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November 11, 2009 Posted by | All Posts, Hospital Stays | , , , , , , , | 3 Comments