Pegson In The Present . Com

Living in the Present…Aware of the Future…

Day 14 and Going Home….you F#$%ing Rippa

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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

November 15, 2009 Posted by | Uncategorized | , , , , , | 3 Comments

5 AM Morning walk, Dexter, and a Pitstop – Hospital stay Day 2

PIC_0323

Pit Stop

So I woke up this morning around 4.30 am to the scream of a cardiac bypass gone wrong in the room next door. I was pretty tired after only about 6 hours on and off sleep even after a Tamazapam which I’m thinking may have disturbed my sleep more than it did good..After a visit to the royal thrown before the nurses knew I was up otherwise I would have had constant offers for help to wipe…I decided I would go for an early morning walk roughly at about 5 am.

Early morning in the Hospital is really the only safe time to be walking about the Hospital since at 5 am its almost completely empty..

My goal this morning was to acquire some cold coke since I was about to have a seizure from withdrawal and to download the new episode of Dexter from the internet cafe, since I didn’t want to blow all the bandwidth on my wireless broadband dongle in one download.

Problem was I only had a 50 dollar note on me and none of the vending machine take 50 dollar notes, so I went to the ATM pulled out 40 dollars in the form of two of the smallest notes ATM’s give out… that being 20’s…So I walked around looking for a vending machine that would take a 20 dollar note finally found one after about 25 minutes wheeling my IV around like it was an unwanted catatonic spouse…

Unfortunatly the vending machine I found that took 20’s didn’t have any Coke…all it had was lollies and seedy dirty filthy below par Pepsi…So I bought a pack of smarties in order to crack my 20 dollar note and than went to one of the other vending machines to get a couple bottles of coke with my proud new coins from the $20 I just cracked.

I made my way to the Internet cafe slowly being dragged to the left every 50 or so metres since IV poles had a paralytic left wheel…

From a distance I Saw there was a special deal on “FOR SHORT TIME ONLY”  I read…..So I purchased the special deal…5 hours for 20 dollars…I was very pleased with my self….However Now both my 20 Dollar notes are gone….So to avoid an anxiety attack about being poor in a foreign place I popped two Xanax the previous user of my IV pole had stashed under the tightening knob before hurling them-self in front of the westpac Rescue helicopter.

So I log in feeling nice and calm and make my way to my fav illegal downloading site….start downloading the new episode of Dexter..It says its gonna take another 30 minutes to be complete, so I started surfing Facebook trying to  up funny status updates…I come up with “Its very hard to find time for “self pleasure” when your machine alarms whenever a blood pleasure rise is detected and within seconds your greeted with your very own personal Nurse Ratchet, only she has hair protruding from one nostril and has a groan to her voice that sounds like throat cancer 3 times over and a 4th bout on the way” I laugh to myself periodically while I spell check it having to search each word in google I’m slightly unsure of due to spell checker being disabled.

I look at the Dexter episode download still 17 minutes to go….I start to become nervous because I don’t want to waste any of my 5 hours 20 dollars…..My IV drip starts alarm….”Bugga” I have one with a dodgy battery…I try to silent it but its alarming with a fearsome beep….The lady across the way repacking the vending machine looks at me with a disgruntled look almost as if I have disturbed her from her happy place of placing can after can after can of soft drink into her beloved vending machine ..

I know I can’t simply press stop on my IV machine since I can’t  risk a blockage or Occlusion…So While my Dexter Episode is still downloading I look around for a power outlet….I find one..its 20 metres away….so I start wheeling myself towards the outlet but end up 15 metres to left down by the morgye…but after some readjustments I reach the power outlet with no more than breaking out into a cold sweat.

I have a pit stop for 10 minutes recharging my IV battery as people walk by asking if I’m ok..and asking have you lost your mummy???…No I’m 23 I reply followed by a stamping of the foot..They still look at me like a retard..maybe because i’m trying to take a photo of myself  while disguising it as an incoming fone call…all for you guys to see on my blog. lol…

Finally I decided it was time to take my sorry self back to the comforts of my bachelor pad ( hell on earth with demons and sh#t )..

I was all excited to see what goodies I had received for breakfast…since it was a total surprise as I had yet to fill in my order forms for the week.

However My bubble was horrifically ruptured and drenched with acid when I found this strange little bottle of milk and a cellophane wrapped piece of hybrid toast/bread/nourishment

PIC_0327
This is what we call a nodule of Milk…its the Milk that a dying cow emits apon death

Enjoy.

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PeGsOn

pegson1986@hotmail.com

November 2, 2009 Posted by | All Posts, Hospital Stays, What dat? | , , , , , , | Leave a comment

Quick Update – Swine Flu needle, Wisdom, Antibiotics, Links

Hey Dudes and Dudettes…

I’m off to have my swine flu injection at 2.30 pm this sarvo at my local GP..I was going to be having it on Monday but since I will be in hospital getting ready for my Wisdom teeth extraction It was necessary that I bring the vaccine forward, realistically I should have had the injection a month back. But I have not left it to late in gaining some swine flu repellent before I enter the hospital system..

So Like I said I am going into my hospital on Monday..I’m being admitted under both my Cystic Fibrosis Doctor (DrWark) and my Oral Specialist (DrWilson). The reason for going in on monday morning when My surgery is not till Friday morning is to give my body a pep up with antibiotics 5 days before the surgery, hopefully alleviating or reducing the flare up from having surgery..

Depending on how well the surgery goes, how my lungs cope, and how my mouth feels after having the wisdoms out will determine how long I will stay in hospital..Likely around 2 weeks.

On other notes I strained my back well I hope thats what I did, very excruciating, definitely not a dull ache more like a fierce rip. Yesterday it took me 30 minutes just to build up memntum to get out of bed..Today its a bit better. I might even mention my  back issue when I go to the GP this sarvo to get my Swine Flu shot.

Below I have included some links to CF and CF related sites that I visit for the people who have been inquiring for sites out there. some of the site links may be dead I haven’t had time to run them all through.

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International CF Organisations

www.cff.org – American CF Foundation

www.cftrust.org.uk – UK CF Trust

www.ccff.ca – Canadian CF Foundation

http://cysticfibrosis.org.au – Australian CF site

CF Research & Medical Information

www.arestcf.org – The Australian Respiratory Early Surveillance Team for Cystic Fibrosis (AREST CF) is a collaborative group of doctors, scientists and nurses in Perth and Melbourne dedicated to the improvement of respiratory and general health of children with cystic fibrosis. The AREST CF runs an early monitoring program specifically aimed at young children for the improvement detection, prevention and treatment of lung disease.

http://www.cfri.org/indexframes.htm

http://www.nlm.nih.gov/medlineplus/cysticfibrosis.html

cysticfibrosismedicine.com – Excellent site, giving information on the management of CF from a patient and carer perspective.

AntenatalTesting.info – Comprehensive information about antenatal screeining.

Expertreviews.org – Online-only journal, featuring review articles covering the latest developments in Molecular Medicine, published by Cambridge University Press.

www.abc.net.au/health – A vast resource of credible health and wellbeing information that is produced by the ABC and includes the latest TV and radio reports. The site offers the community access to credible and non-commercial online information on a wide selection of health topics.

General Sites

www.sharelifeaustralia.com – information on organ donation

www.cysticfibrosis.com – Huge site with forums, blogs or on cystic fibrosis

www.cystic-l.com/index.htm

http://www.esiason.org/about.html

mycysticfibrosis.com – Provides information and personal management charts to track daily health measures for patients – virtual check ups.

www.purplesoup.org – Purple Soup provides challenging activity based programs for children
affected by serious illness and their families. These programs are
designed to rebuild confidence, self esteem, trust and courage, in a
safe, fun and supportive environment.”

Hardin Meta Directory
Provides a list of sites related to CF.

Personal Sites/Support Sites

Norma Kennedy Plourde

CarePlace

Casey’s Blog

Ronnies BlogVery good blog

CF Steph

Katlyns Blog

dirty Socks and Pizzas – A mums bloog

Genetics

http://www.genet.sickkids.on.ca/cftr/

Genetic Interest Group
(GIG.org.uk): supporting those affected by genetic disorders.

CF Gene Therapy.org.uk
The website of the UK Cystic Fibrosis Gene Therapy Consortium.

Cochrane Cystic Fibrosis and Genetic Disorders Group
An international network of health care professionals, researchers and consumers preparing, maintaining, and disseminating systematic reviews of randomised control trials in the treatment of cystic fibrosis and other genetic disorders.

GenePoolNational Electronic Library for Health
Iinformation on genetic conditions aimed primarily at healthcare professionals who are not genetics specialists, but open to anyone from specialists to patients.


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PeGsOn

pegson186@hotmai.com


October 29, 2009 Posted by | All Posts, Daily Rants | , , , , , , , , | Leave a comment

PeGsOn Cystic Fibrosis Blog (tuesday 29.9.09) – Talk about Wisdom Teeth, Transplant, Death of a fellow Pulmonary rehab friend

PeGsOn

pegson1986@hotmail.com

September 29, 2009 Posted by | All Posts, Clinic Visits, Daily Rants, Media Posts | , , , , , , , , | Leave a comment

My Port-O-Cath History and Review

My Port-O-Cath History and Review

Port-O-Cath

Port-O-Cath

I thought that today I would talk about the decision CF’ers have to face about getting a Port-O-Cath  inserted through my own personal experiences with Ports…

If you have read my previous blogs you would know I have had my fair share of PICC Lines, my first being in 1998 when I was 12 years old..Between 1998 and 2001 I had roughly 20 PICC Lines and hated every second of it.

Ok There were a few reasons why my Doctors started discussing with my parents the option of having a Port placed, however the mains reasons were:
>>I was needing more and more IV treatments as my health was declining.
>>My veins were building up with scar tissue to the point that the surgeons were having difficulty placing the lines.
I also remember how horrible and strenuous the whole PICC line process was on myself, which made me reluctant to attend hospital appointments in case I had to be admitted. So The ease of treatment was another reason why a Port was being discussed.

On and off over a 6 months period my Doctors had been bringing up the idea of me getting a Port and how it would make hospital admissions and treatments much easier, although at the time I was going through my Teen rebellion stage and didn’t give it a second thought. That was until the day my Dad had the day off work and came to my Tuesday morning appointment…

Now as soon as my Mum said Dad was coming to the CF clinic I knew I was in for some not so pleasant news since Dad worked full time so it was usually just me and Mum who attended the Clinic..

My parents went into see the Doctors and I could here some discussion going on. I remember it quite cleanly, back than being a Teen I hated the world and was totally pissed off that I wasn’t in on the discussion….About 5 minutes later I was called in…My Dad looked agitated, which he gets like when things are getting a little heated.. So I was already on the defensive and ready for an argument being the Bitch I was back than.

Now basically what happened is this. I was told by Mum that I was going to be getting a Port placed. The nurse and Doctor than proceeded to show me what a Port looked like but at this stage I was not having a bar of it. I remember going crazy, screaming and yelling all sorts of obscenities about how I was not going to have a Port put in and how my life would be ruined..

Now in hindsight the way my parents and Doctors went about telling me was borderline ludicrous, you don’t just tell a 15 year old he is going to have a Port surgically implanted in his chest and expect for him to sit there all happy and content. What should have been done is the idea discussed in more detail between me and my Doctors allowing me….little Pegson at the time to feel more in control, however I guess everyone was clutching a straws and this was an attempt to make it easier for me to have treatments, make my treatments more flexible and eventually be able to do treatments at home, which was all geared to try and restable my declining health and also give me a better quality of life. However like I said at the time didn’t  quite see it this way.

A week later and after considering to run away and live in my cubby out the back I was in hospital to have my Port placed..

So what is a Port exactly?????? Well a Port-O-Cath consists of a reservoir compartment (the portal) that has a silicone bubble for needle insertion (the septum), with an attached plastic tube (the catheter). The device is surgically inserted under the skin in the upper chest or in the arm and appears as a bump under the skin. It requires routine flushes when not in use to avoid blockages and is completely internal, The catheter runs from the portal and is surgically inserted into a vein (usually the jugular vein, subclavian vein, or superior vena cava). Ideally, the catheter terminates in the superior vena cava, just upstream of the right atrium. This position allows infused agents to be spread throughout the body quickly and efficiently .

I woke up in recovery which almost seemed like straight away, but In fact the operation had taken around 1 hour and 25 minutes and at the time I didn’t know but I had lost a fair amount of blood , enough for them to call for a unit of blood just in case, however fortunately the bleeding stopped and the Unit of blood was required. It was later discovered that my Liver disease had contributed to the abnormal bleeding so usually this amount of bleeding is not an issue.

About 3 hours later I was fully awake and back on the ward shit stirring like usual, I was sore but everything seemed ok. Coughing was excruciating and made you feel like your neck was going to explode however some morphine was able to keep the pain level under wraps (please sir can I have some more)

The way my Port-O-Cath was inserted, was through two 2 inch incisions. The first being the incision for the Portal itself, which was placed on the right side of my chest and the second incision being on the side of my neck where the tubing (catheter) was threaded and stitched into the vein before being reattached to the Portal.

The first few dressing changes were a bit tedious and uncomfortable but within a few weeks my neck and chest were healed with no more than a bit of a red scar that now is no more than a light pink blemish.

The Access needle from my very first IV treatment using my Port

The Access needle from my very first IV treatment using my Port

Now the Port stuck out off my chest by an inch however at the time I was quite skinny (around 45 kilos), so if you looked really hard you could notice it under my shirt however now I’m  30 kilos heavier so you can hardly tell I have a Port even with a shirt off.

After having the Port placed, the most difficult thing to come to terms with Is having the monthly access which I time to coincide with the CF clinic date. A monthly flush with saline, followed by a HEP saline lock helps to prevent blockages thus aiding to the longevity of a Port. The accessing of the Port is done with a small right angle needle, it hurts no more than a blood test however if your like me and hate pain you can use Emla cream which contains local anaesthetic that numbs the Port making accessing completely painless.

Another Issue I came up against was contact sport, luckily for me I had finished Rugby League the year before so the risk of a knock wasn’t a huge issue but I have received the odd knock on the Port from Frisbees, Baseballs etc and It is extremely painful. The pain is similar to being kicked in the shin. However over time you learn to guard your Port.

So my Port had been working great for two years and I was really happy with it alround mainly because the Port was allowing me to be much more productive while on a treatment as I had two arms available unlike having a PICC inserted and I was able to attend school with hardly anyone noticing meaning life was able to go on without any of the annoyances that come with a PICC line.

Sometime around 2003 my CF liaison nurse when accessing my Port Noticed that the pressure required to push saline through my Port was increasing, however she could easily without issue withdraw blood from the Port..

Eventually my Port become increasingly more difficult to flush and not even an IV machine could pump medication through my port any quicker than 5 mls an hour, surprisingly withdrawal from the Port was unaffected, so it was clear that a blockage was not an issue.

To me personally the Port-O-Cath felt fine, it wasn’t red, wasn’t sore or inflamed at all. After discussions with the Doctors it was believe that maybe a kink had occured so I was sent for an X-Ray  which highlighted an issue thats quite rare where  the Tubing (catheter) on the Port had flicked around in the vein and was now facing against the blood flow which meant that any fluids entering the Port were having to compete against my body’s natural blood flow, however this allowed for good return of blood as the blood flow was heading straight up the tubing.

So the decision was made that when my next IV antibiotic course was needed I would go back into surgery and have the Port replaced. A few months later I went in and had the Port replaced. My surgeon was able to insert the new Port into the exact same place as the previous Port so there was no extra scars..

I was 18 at the time and coped much better with the surgery and recovery. So now its 2009 and this port is 5 years old and so far I have yet to run into any complications and hopefully with a bit of TLC the Port won’t need to be replaced anytime soon.. However if the Port does need to be replaced the Surgeon has told me that the placement will have to be somewhere else as the Scar Tissue build up from having two Ports would make if very difficult for a third Port to be placed without a heighten risk of infection.

My Feelings on Ports

I personally wish I had gone with a Port-O-Cath straight up and had never ventured down the path of PICC lines. While my Port does require on going care, it’s a small price to pay when I can have IV antibiotics going within minutes compared to within hours or even days with a PICC line.

I have never had an issue with a Port infection although I do know some CF’ers that have had infected Ports which usually can be controlled with antibiotic creams, however PICC lines also carry the same risk of infection if not more so.

So In conclusion if your having constant treatments and your in and out of hospital frequently than a Port-O-Cath may be the way to go, but if your veins are good and your relatively healthy and only require a couple of treatments a year than a Port is probably not necessary. In regards to everyday activities, you have to be careful while accessed but no more than a PICC Line, however when your healthy and your Port is not accessed you will constantly forget you even have it, just don’t take up boxing.

I hope this was helpful and not to boring. Lol

Port info on Wikipedia

PeGsOn

pegson1986@hotmail.com

September 27, 2009 Posted by | All Posts, Daily Rants, Media Posts, Other | , , , , , , , , , | 5 Comments

PeGsOn’s Cystic Fibrosis Blog – G-Day Guys and my medications out of control

G-Day Guys.

No ground breaking articles today.. Just dropping in to tell you about my not so exciting day…
Got up 9am which was good considering I had a late night last out at a Musical called the Pacific which a good friend (blacky) had a major role in. So I started my morning treatment around 9.454am finished at 12.08 pm…still hadn‘t eaten. Realized how much extra time was involved in doing my treatment due to not having all the drugs, needles, syringes etc in the one place and having to search around

So I Decided to write everything down I take off the top of my head:
Creon
Azithromycin
Pulmozyme
Minocycline
Tobramycin
Coliston
Aztreonam
Acimax
Buscopan
Vitamin K
General Multivitamin
Ventolin puffers and nebs
Seretide
Mylanta
Than I wrote down everything needed to take/use/make the medications:
Syringes
Needles
Saline
Water for injection
Nebulizers
Milton to clean the Nebulizers

So after that I decided to organise everything into piles…but there was so much, So I went to Bunnings (like a Costco but for outdoorish stuff) bought some big tubs…….4 to be exact.
1 for all the drugs I do morning and night like tobramycin etc, a Tub for all the goodies needed to make the medication up like saline, syringes, needles etc, than a small tray for stuff needed here and there regularly through the day like ventolin, panadole, acimax etc and than a big tub to wash the Nebulisers in.

So I’m hoping the reorganisation can cut an hour a day off my treatment and also make me more compliant as my compliancy is highly dictated to memory so if out of sight out of mind in case. So Now everything is together and should make a still difficult task a little bit easier.

I would really like ideas of how other people organise everything as I’m sure my organisation I did today is soon going to turn back into a wok shop (big mess)..

Questions for You from Me:

1.what’s your opinions on Mucomyst? Does it work….is it worth implementing?

2.Does anyone use colistimethate….the Coliston solution made especially for nebulising? I have just started using it after using Coliston for injection for the past year for nebs.  So what do you think of the specialised nebulized solution? I feel it goes through very quick and I’m concerned its not right? (PARI LC)

Thanx Mate…

PeGsOn
Pegson1986@hotmail.com

September 10, 2009 Posted by | Uncategorized | , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Video Blog – End of the Week Feeling Better Friday 28.9.09

Cooked PeGsOn

Cooked PeGsOn

Ok so I thought I would do a quick video blog just to end the week in ready for the Weekend. I’m also looking at new nebulizers that would be better for my nebulized antibiotics.

I currently use a Pari but am Looking for something that may get the antibiotics to my lungs more efficently so If you have any ideas leave me a comment..Don’t forget to check my live stream out..I try to get onit as often as I can..

Would anyone be keen for a neb blowing competition.You basically try to blow different shapes or anything with the vapour from your neb…just an idea.

……..

PeGsOn

pegson1986@hotmail.com

August 28, 2009 Posted by | All Posts, Daily Rants, Media Posts | , , , , , , , , , , , , , , , , , , , , , , , | Leave a comment

PeGsOn’s Blog Monday 24.9.09 – My encounter of the Iron Transfusion Kind

Iron Transfusions.

So I didn’t really know what to write about so after running through general ideas I decided to write about my Experience with an IRON transfusion.

Now my first and only Experience to date with an Iron transfusion came early this year when I was in hospital doing a course of IV antibiotics for a Chest Infection

I had just changed doctors within my CF clinic after my old Doctor (Dr Saltos) had retired and my New Doctor (DR Wark) and I were trying some new ideas out, to try and change up my treatment plan and our first point of call was an Iron Transfusion.

The reason for me deciding to have an Iron Transfusion were quite simple.. My Iron was quite low and has been forever so I have always had supplements usually Ferro Gradumet & Vitamin C, but since I was hospital and we were looking into way of bettering my health with fresh eyes we decided to give an
Iron Transfusion a go and hopefully I would get a good kick out of it and be moon walking around instead of hobbling.

The Culprit

The Culprit

Ok so the Iron transfusion looks like a syrup coloured bag of saline and runs through an iv machine via picc, canula and in my case my Port-O-Cath.
So with all transfusions of any nature there is a small risk of reaction, Usually these reaction are small and one can put up with them..So in to help limit or avoid a reaction the first 40 mls of an Iron transfusion are ran in over two hours, thus allowing ample time for a reaction to occur without having to much pumped into your system..

So after the first 40 mls of my Iron Transfusion had ran in over the allotted 2 hours with no issues arising, the remaining 460 mls were ran in over a 3 hour period..

On completion I felt fine, no different than, even the mind over matter issues of being told a reaction is possible had disappeared and I felt comfortable that I was out of the woods and there was going to be no reaction and to be honest it wasn’t even a thought on my mind..

Well How wrong was I going to be???very wrong.

At about 7 pm that night My mate Haydnson rang and we had a chat. At around 7.15pm I started to get aches and pains and a feeling of internal coldness…You know when your hot under your clothes but on the inside you feel cold aches. By 7.30 pm It was becoming impossible to continue a conversation so I said to Haydn I had to hang up since I was feeling rather ordinary.

By 8 pm I was so cold and aching head to toe that I was pacing around my 2 metre length of IV tubing..

So I Buzzed the nurse and mentioned how bad I was feeling but unless your screaming or bleeding or have one of your regular nurses they don’t really take much notice…So I decided to jump in the shower and try to warm up as I have had similar feeling where this has helped.

Hospital showers are pretty average at the best of time..lack of pressure and the water is never piping hot . But its all I had. So after spending 30 minutes under Luke warm water I was feeling no better…So I decided to jump in bed and try sleep these pains off…Sleeping things off has worked wonders in the past for me with all kinds of issues..Ie Alcohol.

After about an hours sleep I woke up drenched in sweat and in agony…The pain was all over my body by now, but more focused in my arms and legs. The closest thing to this pain that I could describe is if you leave a tourniquet  on to long you get this deep internal ache that feels likes its about to explode and that’s exactly how my whole body felt especially my arms and legs

So I called the nurse again and explained my worsening situation…She was an agency nurse…one of those nurses that go from hospital to hospital filling in and she couldn’t give a shit..So she gave me some panadole and an hour later the pain was no better. I was reduced to rocking back and forth on my bed saying repetitive words to try and clam myself as I was starting to panic..

So finally I got another nurse to page the doctor and he turned up younger than myself and asked a million questions almost as if I was being quizzed..Than the great doctor offered me ibuprofen. I remember yelling are you f#cking joking I am in f#cking in agony. Do you want me to scream and cry to show how painful this is…I have always found us CF’ers are so good at covering and handling pain sometimes you have to put on a bit of an over reaction to get attention since our whole lives are usually spent under reacting to our numerous aches and pains.

After trying to get through the pain for the next couple of hours I decided  to call my mum..By this time it was 3 am and I was in a terrible state and was crying on the phone. Even though mum always says to call her no matter what time..she wasn’t to impressed and later that morning when she came up the nursing staff copped the full brunt of her lack of sleep.

After crying to myself I decided humiliation  of the nurses was the only tactic…No Joke…it works..So I buttoned up the back of my gown so only half me pecka was showing, (ha-ha a man can dream) unplugged the iv machine, and started to wheel my sorry arse down the hall away…The nurses at the station could see me coming from a mile away as I was moving sub grandpa pace..

Eventually when I made it to the nurses station they expected me to stop and talk but I kept on shuffling my sorry arse down the hall way…One nurse yelled out to me where you going mister? I replied Emergency…I had decided to wheel myself off to emergency in attempt to get some decent help for this agony I was suffering..

After a few heated words they convinced me to come back to my room and assured me they would page the doctor. Again.

About 20 minutes later the Doctor turned up and this time after I had a performed a song and dance he finally prescribed me morphine which seemed to help in allowing me to sleep.

The overall effect of the Iron transfusion lasted for 5 days…They involved aches and pains…internal

The Protest

The Protest

coldness…constant sweats…dry mouth to the point where your lips stuck to your teeth….Fever that jumped between 35 and 40.3 and on the second day stomach cramps right up into the oesophagus that caused the doctors and myself to think maybe I was having a heart attack…Buscapan and Mylanta got that part under control only after 12 hours…yes things are slow in a hospital.

So Unless I was desperately needing another iron transfusion to survive I wouldn’t even consider having one again…and I think my doctor would say the same thing…So I’m going to stick to the tablets.

However one thing I have learnt. If you are going to have an Iron Transfusion have the Transfusion at the very start of your hospital stay as I made the mistake on leaving it towards the end of my stay, already having been on IV Antibiotics for 2 weeks and after 5 days of dealing with issues caused by the Iron Transfusion my chest was back to where it was before my hospital admission…

So in conclusion be weary of the Iron Transfusion but remember my case was the exception to the rule as my doctor had never experienced a reaction quite this severe and so delayed. We believe it was because of my liver condition that the issues appeared all at once and not gradually as the Iron most likely was processed by my damaged liver all at once and became over loaded. Oh and have morphine ready and on tap.

Please comment or email your experiences, ideas etc I really love hearing them even if its just pointing out one of the numerous spelling mistake. lol

PeGsOn
Pegson1986@hotmail.com

Retweet me please……

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Just on a side note I receiving a couple anonymous comments complaining about the way I write my posts. Yes how pompous must they be..But I write it as I feel it..I don’t set our nor want to write these artistic pieces one may come to expect from other.. As long as I get my point across I’m a happy man. I like to write raw…raw baby raw.

August 23, 2009 Posted by | All Posts, Daily Rants, Media Posts | , , , , , , , , , , , | 1 Comment

Pegson’s Blog Thursday 20.9.09 – The Day It Dawned on Me that I was actually sick

The Day It Dawned on Me that I was actually sick

Under 12's Mod League

Under 12's Mod League

Now I have never been a person who has liked to be in the dark health wise. I have always taken an active role in Cystic Fibrosis even when I was little Bub Bub. However I didn’t always know that I was sick.

Like a lot of us CF’ers I was fairly healthy as a young child, I had my share of nebulised treatments but nothing horrific.

Up until I was 13 and had my first hospital admission which was a tune up ready for year 6 school cap , my only hospital experience was when I broke my arm and had to have the cast re-set twice and still to this day my arm is mangled like a twisted sand shoe. See Pic click here or watch video of my weird joints click here

Now I attended my CF clinic every Tuesday morning or when mum worked I would attend the asthma clinic on a Thursday at the John hunter hospital. Now while I knew this wasn’t the norm for my friends it never really bothered me and I remember thinking that everyone had their own clinic to attend.

Not Even taking enzymes (pancreas) that mum would place under the glad wrap of my fairy bread sandwiches at primary school made me think I was that different..

However I still remember quite vividly the day, and the moment that I realised that I was Sick and it was very serious..

Let me set the scene. I was always encouraged to play sport as a kid and started off with little athletics and moved on to mod league (its like NFL not soccer). We would play games on Saturday mornings and Every Thursday afternoon have training which would begin with a few stretches than two laps around the oval..

Holding the Trophey after a Grand Final Win

Holding the Trophey after a Grand Final Win

Now in my mod league team my position was a Winger, Now a Winger in Australian Rugby League is the guy closest to the sideline and he is usually very quick.. Similar to a wide receiver in American Football. So basically I was one of the quicker players in the team and when we needed a Try (touch down) the team would spread the ball out to me and I would run down the sideline.

Ok so this gets me to the moment I realised the severity of Cystic Fibrosis and experienced the first effects of Cystic Fibrosis’s Gradual Decline

We were doing our usual two lap run around the oval before training and I started to fall behind which wasn‘t that uncommon…I always just thought I was bit lazy and a bit unfit. Haha.

I would accelerate and eventually get back to the pack,. However this one day things were different by the time we had completed the first lap I remember I was seriously panting and breathing real deep. I started to fall behind again and this time I didn’t have the energy to accelerate back to the pack…

I remember coughing and staggering while trying to keep up as all my mates were disappearing into the distance…I still remember Thinking to myself as a  little 12 year old boy ….what’s wrong with me?? I’m a Winger….I meant to be quick….and even the front rowers who are like defensive guards in American Football…You know the really big slow guys.. Well even they were at this stage a few hundred metres ahead…

It was at this exact moment a huge rush went through my body full of emotions and It dawned on me…that this was a result of Cystic Fibrosis and that I was Sick.

I came home that night after training and questioned mum and dad as to why I kept falling behind my friends…hoping they would have some answer……Mum looked at me and started to tear up and I remember asking her why she was crying….She denied it of course but now I know, She was crying because  her little boy had just discovered that he was different and that the Gradual Decline of Cystic Fibrosis was in Full swing.

>Leave me a comment about when you first had that realisation of your Cystic Fibrosis, I would really appreciate and like to hear your story.

PeGsOn

pegson1986@hotmail.com

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August 19, 2009 Posted by | All Posts, Daily Rants, Media Posts | , , , , , , , , , , , , , , , , , , , , | 5 Comments

Pegson’s Blog – Hi…How are you today??? Thats the Question…

Hi…How are you today?……………..

I know what I'm talking about

I know what I'm talking about

Do you ever find yourself in this conversation?

I do almost everyday.

I’m asked how are you today Arron and I always respond with I’m ‘Good’ thanks..

I than find myself afterwards thinking, well, actually I feel flatter than hammered shit. I than wonder why the heck I responded with ‘Good‘ thanks….

This was a common occurrence until a few months ago when I decided to make a proactive decision and take it upon myself to answer more truthfully about how I actually felt on a day to day basis.

The results were and are interesting..

You get your typical run to the hills response from people who are so confronted that they high-tail it out of the place…quicker than a rat up a drain pipe….you also get your typical robotic response which goes something like this…Hi Arron how are you today?……I feel pretty ordinary…..arh that’s good to hear..

No joke this actually happened to me the other day …all I could do was laugh because nothing shocks me these days,

So while the strategy of being more truthful about your health when asked can be a little awkward it can also be liberating surprising ..

I explain…

Do you ever feel like you spend a chunk of your precious energy into putting on a fake smile and making yourself look and seem healthy??

Well I do!, and it takes a lot out of me. And while sometimes this is required to get by, a lot of the time simply sharing how you feel can really take a load off in all aspects of your life…

By giving a more accurate response to how your feeling it Weeds out your true friends who you can rely on from the passengers that are only along for the ride..

Because people are very naïve, especially people who haven’t faced constant diversity day in, day out or should I say….breath in, breath out (Oh I’m good). And its not their fault as how can you understand something if you have never experienced it for yourself or at the very least been made aware….

So by actually expressing how you feel it creates a better understanding for your situation within the minds of the people you deal with daily.

So when your asked how your going next time…..tell them how you really feel. You may well be surprised how people will step up to the plate and give you a helping hand and we could all use a hand even if its just to pass the next Cipro….

Try It out and let me know if it makes life easier or more difficult….You won’t regret it.

Lol this blog sounded like a Danoz Direct Commerical

PeGsOn

Pegson1986@hotmail.com

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August 18, 2009 Posted by | All Posts, Daily Rants | , , , , , , , , , , , , , , | 6 Comments