Pegson In The Present . Com

Living in the Present…Aware of the Future…

Bowl of

Bowl of mucus…….I mean 2 year old cream corn.

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May 25, 2011 Posted by | Uncategorized | Leave a comment

My dog Boady

About 2 years ago my jack Russell, zaphyr was his name. Died in the space of two weeks from a quick growing massive abdominal Tuma.
The household was devastated. Especially my dad since zaphyr was like his third son.
6 months had passed. We had tried adopting a 6 old dog as we were unsure about going through the puppy stage again. However they turned us down. Due to a table near the fence. Lol no chance to slide it a metre away.
Anyone so that didn’t work. So as a Christmas present I decided to get another jack Russell puppy and surprise the family.
I embraced boady straight away since I was after a little mate to keep me company since my days of being put and about are becoming less and less. However it took dad a good 6 months to fall in love with boady.
So below are some of my fav photos.

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May 14, 2011 Posted by | Uncategorized | | Leave a comment

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…

LEAVE COMMENT

PeGsOn
Pegson1986@hotmail.com

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

Hospital Stay Day 13 – IV machine Alarm Clock

Hey Guys its early Sunday morning..

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Howdy

I have been able to get much better sleep the last 24 hours than the past 12 days but still way below what you would call acceptable..

My mobile phone has been playing up lately so I didn’t trust the phone’s Alarm Clock  to go off and wake me up in time for the Soccer and Rugby League games this morning,  So I set the speed of my fluids on my IV machine to be completed by the time that I needed to wake up to watch me sport. So basically my IV  machine is now a glorified Alarm Clock.

I’m trying to ween off the opioid pain killers for my wisdom teeth and use the 4 paracetamol that I’m allowed. If I need more I have to revert back to the opioids because I’m only charted for 4 paracetamol because they can harm your liver..20 hours without a codeine or Endone tablet and my body feels a bit off so some addiction must of occurred, pain wise I’m doing ok just eating and physio is bad, but so far my 4 paracetamol is holding me over..

Chest wise I feel a bit yucky, every time I cough I’m expecting blood…I have a real niggly tickly cough that is causing me grief. Its definitely not my normal type of cough, I have tried ventolin, pulmozyme, hypertonic saline but can’t seem to calm it down. Hopefully I haven’t acquired some other bug while in hospital as there is tons of colds, flus, and chest bugs in this ward along with the more nasty stuff like staff and what not…I always worry the STATS machine hasn’t been cleaned and the little Oxygen reader thing they place on your finger still has the finger germs of the previous person, which is a great way to pick something up.

Sot that’s about it for today not much has happened its been a pretty easy Saturday, I hope I do go home on Monday arvo because I think I have improved as much as I can in hospital because so much of my good health and lung function is based on fitness and being active….Antibiotics play a roll in allowing me to get fully healthy by reducing the infection but they don’t actually fully hand me a parcel of good lung function and fitness, a lot of stuff other more than just antibiotics needs to be done to get to that level of better health and being in hospital confined to a room laying in bed doesn’t really help with that.,..

Anyway Hospital is getting boring and I want home…Haha and some bloody double cheese pizza….heal teeth….

LEAVE COMMENT

PeGsOn

pegson1986@hotmail.com

November 14, 2009 Posted by | Uncategorized | , , , , , , | 2 Comments

Hospital Stay Day 11 – Home on monday

November 12, 2009 Posted by | Uncategorized | 2 Comments

Reasons for my Hospital Admission Explained in Greater Detail

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ME in Hospital

Reasons for my Hospital Admission Explained in Greater Detail LEAVE COMMENT

I have had quite a few people ask me why such a long hospital admission for a simple wisdom tooth extraction so I thought I would go into some detail to explain the full story.

Ok so its morning 4 of my combined chest tune up which is not going great guns but that’s not unusual for me as I don’t often prosper in hospital and my wisdom teeth extraction which is down to happen in less than 30 hours.,

In Quick..The reason for the Wisdom teeth extraction is not that they are bothering me, because their not. However the removal is due to needing to go on the  Active  Transplant list. The protocol put in place in Australia to go on the active transplant list means that all wisdom teeth yet to settle into place must be removed as a set of impacted wisdom teeth  after transplant is just an infection waiting to happen, considering your highly immuno suppressed.

So if you have read any of my blogs over the last 3 months you would have noticed I have mentioned this admission quite often as it was a planned thing as to get a surgeon who was willing to operate in a public hospital due to my CF doctors being all located at a Public Hospital …Not hard to find but it meant waiting quite a while on the waiting list which I was actually placed on as high priority..

So it was organised with both my CF team and my Oral Surgeon team for me to come in a few days in advance so to build my lungs up a bit which should hopefully make the surgery go a little smoother, in theory.

Now everyone seems to be under the impression I’m just having four teeth plucked out, well I’m not..

My wisdom teeth are physically not bothering me at all, only the top two have slightly started coming through the gum and that’s only to the point where a millimetre or so is visible. While the bottom two are 2 cm’s  deep in the jaw bone when viewed on x-ray, so quite a distance from even reaching the gum.

So what makes this surgery so difficult? A Few things actually. Number 1. My lungs at best are 48 percent so given I have sat around hospital I would say 45 percent at the moment is a fairer assumption..

I suffer frequent haemoptysis which means another aspect that has to be closely monitored in surgery.

I have moderate and progressing liver disease, which has so far caused slight Portal Hypertension and Esophageal Varices, while these at this stage seem to be under control they are an extra variable that play a part in surgery. Especially wisdom teeth surgery since bleeding is quite abundant in any oral procedure and combine that with having a dodgy liver and poor clotting factors and low platelet levels its quite important that all precautions be taken…

The final issue of the surgery is how close my top wisdom teeth are to my sinus, roughly 3 Millimetres away which means in all likely hood a small hole between sinus and mouth could be created when the wisdom teeth are pulled, which while not unusual means a whole new complication that needs to addressed…

There is also the matter of me CF related treatments that I do day to day. That consists of nebulised solutions,  most delivered by mouth pieces not simply masks. Those being Nebulised Tobramycin or Colliston along with Pulmozyme..

Now having oral surgery and having my jaw bone dug into , Its highly likely I’m not going to be up to having a plastic mouth piece in my gob sucking away on tobi, so that is also another reason I have been admitted and will likely stay a few days to a week after surgery so that all my medication can be done via IV.

Pain meds…Well they don’t like giving me Panadole (Tylanole) to begin with for liver reasons at least in high doses and we all know how bad morphine can be for someone with lung issues. While its great for relieving pain its also suppresses the lungs and makes it quite difficult to get rid of any secretions…

So these are all reason while I am in hospital., While in here I’m also looking at getting a few things addressed. One of them being the constant nose bleeds from my right nostril I have been suffering after any coughing attack which all come to the forefront after a terrible head cold about 2 months ago that was so concentrated in my nose and throat I have only in the past two weeks started to get a somewhat normal sounding voice back…

I also have numerous x-rays, bloods, and swab test I believe that can all be fast tracked while in hospital which are just some of the smaller tests I have requests slips for…it becomes quite overwhelming so using a hospital admission to get these little things out of the way is smart because you usually go to the head of the line as IN PATIENT as compared to an OUT PATIENT..

Overall the goal of all this effort is to finally be able to go back down to Sydney RPA (Liver TX)  and ST Vincent (LUNG TX) Hospital having fully completed transplant work up. Its been quite a road this Transplant work up.

I have been on the Transplant Work up road now for probably close to 18 months. I have been asked by some people if I’m committed because its taking so long, which I reply of Cause I am. I believe one of the reasons its taking so long is because I have to deal with two hospitals. They are both 180 km’s away, plus it hasn’t been overly urgent and I have been able to take my time in making my decisions, that being said I have been waiting for the wisdom teeth to come out for 4 months now so that was really out of my control..

As for general Transplant protocol here in Australia, Usually one is listed if they pass the criteria once that continually sit at around 30%FEV1 or lower. As of two weeks ago I had worked myself up to 48% from 42% 8 months ago. That being said and taking into consideration that I also suffer from liver disease my doctors have said I might ought to consider a threshold of 35% FEV1 as my listing point just to give myself an extra chance…

But at this point unless I get hit by a health complication out of nowhere, I still have a little time before being fully listed becomes a rushed situation, and this further reaffirms why we are taking so much care with the Wisdom teeth extraction as a rapid out of control Exacerbation at this stage of my health could greatly increase my chance of having to be listed much sooner rather than later.

As for right now I’m waiting for my Temazepam to kick in so I can get some much needed sleep while hoping this itch in my throat I have had for the past few days stays only at an itch  level and not develops into something more sinister  as like in the past I have always responded poorly to hospital IV’s mainly because I always seem to catch something from the extra abundance of people I come into contact with as compared to a full-on home nebulised treatment….

But any way my Temazepam is starting to workfffsgvrsfKknbfijn…….ZzZzZzZzZzZZz ZzZzZzZzZZzZzZzZ zZzZZzZzZzZ zZzZZzZz ZzZzZzZ

Further Reading

LEAVE COMMENT

PeGsOn
Pegson1986@hotmail.com

November 4, 2009 Posted by | Uncategorized | , , , , , , , , , , , , , , , , | 5 Comments

MAC in your Pipes Nothing is safe these days….

The Case for Very Hot Water

For years, conservation advocates have told consumers to turn down the thermostat on their hot-water heaters — largely to save energy, but also to avoid scalding showers and baths.  At least for some people, however, this green tactic could prove dangerous, new studies indicate.

“The number one cause of waterborne disease outbreaks in the United States,” says environmental engineer Marc Edwards, “is not contaminants leaving the water treatment plant (we do a good job of killing those). It’s the pathogens that grow in home water heaters.”

Last weekend, seven reporters attending the Society of Environmental Journalists annual meeting toured Edwards’ lab of at Virginia Tech, in Blacksburg — and were treated to some sobering information about water quality. Like that in water heaters.

On its website, the Department of Energy notes that, “Although some manufacturers set water heater thermostats at 140 ºF, most households usually only require them set at 120 ºF.” For each 10º drop in temperature, consumers can expect to see a three to five percent savings on energy use. Moreover, DOE points out, setting that thermostat to 120º could extend the heater’s lifetime by slowing the buildup of minerals and corrosion within it.

What DOE and other energy-conservation sites don’t point out is that 140 ºF will kill a number of potentially lethal waterborne organisms, like the ones responsible for Legionnaire’s disease and NTM, short for nontuberculous mycobacterial infections. In contrast, 120º provides a nurturing environment for such toxic microbes

Owing to lead-poisoning concerns, people should never drink hot tap water. That’s why the primary route to respiratory disease from these germs comes through inhalation of the steam associated with showering or hot tubs. Infections due to these home-grown germs are estimated to kill 3,000 to 12,000 Americans annually, Edwards says.

How come we haven’t heard about this? Mistaken for flu, many cases remain off the radar screen, he says. But check the web and you’ll find Edwards wasn’t exaggerating about a growing link between hot-water heaters and disease. A few months ago in the Journal of Water and Health, Joseph O. Falkinham III, also at Virginia Tech, and his colleagues reported on a shower link to NTM in a 41-year-old New York City physician.

When X-rays from a scan of her chest confirmed the tell-tale nodules for this disease (caused by a bug that’s close kin to those responsible for tuberculosis and leprosy), Falkinham arranged to sample the plumbing in her bathroom. Mycobacterium avium cells were found in all samples. What the microbiologist found: The DNA fingerprint of the bacteria responsible the woman’s lung disease “is the same as the mycobacterium in her hot water, cold water and her showerhead.”

Showerhead? Yep. Unscrew the shower head, he said, and you’ll find “a lot of sediment, crud and slimy stuff.” A biofilm comprising a host of different bugs — including Mycobacterium — develop in the shower head.

With financing from a public interest group representing families of people with NTM, his team is now investigating the plumbing of some 50 households around the country to see if the water lines of other patients with the disease similarly host mycobacteria. “We’re about half-way through the study,” Falkinham told me yesterday, “and the answer is yes.”

So turn up the heat on their hot water heaters and these bugs will die off? Nope.

As with TB germs, once environmental mycobacteria find a human host, they settle in forever. Drugs can keep their numbers down or essentially put the microbes “to sleep,” as Falkinham describes it. But take the drugs away or stress the host and the disease can awaken, leaving its victim with coughs, fever, night sweats and sometimes diarrhea. Untreated, the disease can even kill.

The same essentially also occurs in home plumbing. Once piping or water heaters become infected, residual populations of germs take up permanent residence — usually in biofilms. Later, when the flow of water through plumbing is high, such as during a long shower, bits of biofilm can break loose from surfaces, seeding the water with germs. Some cells will readhere to the inside of piping — or your showerhead. Others will just fly out the faucet.

Falkinham’s investigations indicate that trace quantities of mycobacteria taint most water mains around the country. We just boost their populations once they enter home plumbing. Which raises the inevitable question: If these bugs are ubiquitous, why aren’t we all sick?

We probably are all susceptible to infections if concentrations of the microbes get high enough. But studies in the United States and Europe have identified certain populations that appear especially vulnerable. These include people with HIV, individuals with cystic fibrosis, and especially slender senior citizens.

The question now: Will the risks from contaminated plumbing systems diminish if we raise water-heater temperatures back up into the 140 °F range. No test of that has yet been conducted, although Falkinham is itching to start one.

September 14, 2009 Posted by | Uncategorized | , , | Leave a comment

I was Born a Fighter….I won’t lay down

Note: I’m not sure where this came from within me or why I wrote it or if It means anything or even exactly what it is…maybe you will read this and see it as nothing more than nonsense or maybe you will read this post and feel something similar to what I feel…please remember this is using truth and putting a creative touch to….seems i have freaked a few people out…got a few emails lol…..calm down……

I was Born a Fighter….I won’t lay down

I don’t really know or want to be writing this entry at the moment….I actually considered turning my notebook off, just to avoid the urge to write…..That’s like my life…I have the urge to do many things however I simply try to dull those urges to avoid disappointment when this worn down body and soul fails…..which unfortunately is happening more often lately.

I have what all us CFers dread the most during the winter season the bloody Flu….and the disappointment I feel about this is likely the most disappointment I have felt about a health related issue for quite some-time…

The Flu itself isn’t what disappoints me…it a part of life, What disappoints me is beyond a simple dreaded Flu….its more about what the Flu stands for, it’s a real life metaphor for something that you have no say in, a forced answer disguised as a choice….I may be making no sense, so let me explain how the Metaphoric Flu got me this time, like it has before and will again..

For a CF’er nearing transplant listing I have been relatively well and stable, and have been able to keep my health under control over the harsh winter which has seen the emergence of many old enemies and new ones (swine influenza). I have been able to stay healthy mainly because of a strict treatment schedule that leaves me penniless at the end of a good day and my pulmonary rehab class that I have taken up twice a week at the hospital…..

I’m so proud of myself for actually halting the gradual progression of Cystic Fibrosis for a few months…..but like I mentioned before the Metaphoric flu has struck….This is not the major problem, it’s the aftermath….The fall out that leaves me with so many casualties is what causes problems around here…I’m left to deal with the resulting chest infection which takes eats away at my time on this planet, 4 weeks is my Flu to Recovery ratio before things are under control if the toss of the coin goes my way…..

It’s not as simple as taking a magic pill and sitting around.….It involves early mornings to wash nebuliser masks….that’s if your healthy enough to be at home……mixing drugs……lining up all the antibiotics at the right times so not to clash with each other….Remember this mission is being performed while sick to you stomach, you can‘t breath, you can barely walk around however you must continue on. You wish you could call someone to do this sickly task but there is no way out….its your task and soley your task alone..

The body can be kept alive without a heart even without a brain however the one thing the body can not live without is Oxygen…..This is your fight….but this Is no prize fight…your fighting the fight of your life, there are no rules and your running on empty and yet you must prevail..you have no other choice.

You work through the pain and reconfirm the clique No pain…No Gain….. You complete your treatment and work your way back to having your health hopefully back under the control of your own wise hands, but the 4 weeks down time being sick and doing treatment has made your already tired body even more weak to the world….The fitness we had gained will be lost and will require strenuous work to regain…..now if we are lucky you will get a few months without falling ill again which will allow us to get on top of things again…but just in time to be pushed back to the ground again…

We know that’s how Cystic Fibrosis works…. you get yourself on top and you get thrown to the ground….The problem is when you have been knocked to the ground, what happens if the next knock down comes before you get up…..well that my friend is something eventually all us CF’ers will face one day…..the ultimate Knock out that you can’t come back from….a knockdown you can‘t stagger to your feet from.……

In meantime we must keep fighting…We must keep getting up knowing that we will be knocked down before having the chance to throw our own counter punch……We must keep mixing these drugs, passing this poison that keeps us alive through our veins, continue to breath fumes of these nebs, we will continue, even when my fingers have cracked from the cocktail of medication that has soaked this once soft skin….I will keep going, I won’t stop….I will only stop when the bell has rung and until that time I will live life to fullest whatever way I can…I will suck the nutrients out of life even if the fruit I suck is dry, I will have the courage to fight a war that cannot be won, not because of choice or reason but because I was born with Cystic Fibrosis…. I was born a Fighter…..I won’t lay down….I will keep fighting to the very moment of my last Breath, because that’s who we are…..

PeGsOn

pegson1986@hotmail.com

September 14, 2009 Posted by | Uncategorized | , , , , , , | 10 Comments

Quite Update – I have a cold/Flu..REMEDIES – IDEAS NEEDED BADLY

Not so much good news this morning guys…I have woken up with a raging sore throat and stuffy nose…the drift into a full flu or cold is going to be quick and the decent into my chest will and always follows…
I have started my self on tamiflu and than in about an hour once that has gone through my system shall decide what other medication to take. I don’t like to use Cipro unless its with Ceftazadime and Tobramycin and since I only used them 3 weeks ago I want to give them a break….so its something I have to contemplate…I’m thinking a course of Augmentim…..It may jump help shield my Lungs 10 to 15 percent of this cold/flu. But after 23 years of use but be pointless.

At this point in this blog I have alreadyblown nose 3 times so Its rapidly onset…If it is flu I have started tamiflu within 12 hours and it works within 48 hours so It should help.. I’m currently on my month of Coliston Nebulised and have 2 more weeks of that before I would usually switch back to tobramycin…I have been going so well. Lung Function has gone up 2 .5  percent just from Rehab and I actually got the Boxing bag out yesterday for the first time in 3 years and actually carried the thing to the pool area…which must weight atleast 40 kilos…So this is rather disappointing on so many levels…..So much work that I have put in over the last 4 months is going to be quickly reduced to nothing….
Sorry for this rant but I’m a bit annoyed I don’t know how I have picked it up….Its just been me and my family the last 3 days and have not ventured out…If  When I do leave my room this morning I pick up on any cold/flu sysmptons in anyone of them….I may just be blogging from prison next time lol.
Ok send me some health people this is gonna be battle ….There is going to be inevitable loss of health so the plan is to limit it, as having a lung function of 44 percent. having not been listed yet on transplant and still waiting for wisdom teeth to be removed….I can not afford any hiccups..Im also using betadine throat gargle…a special antibacterial honey any other suggestions to slow this down…to keep it in the head…and limit the fall out on my lungs…..
Sorry again for a rant….Im just really worked up or one could say very upset.

PeGsOn
pegson1986@hotmail.com

September 12, 2009 Posted by | Uncategorized | , , , , | 2 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