Pegson In The Present . Com

Living in the Present…Aware of the Future…

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 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….

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PeGsOn

pegson1986@hotmail.com

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

Repost : My Experience with Hemoptysis and How I deal

NOTE: I have received about 10 emails over the past month and a few more since I have been in hospital asking all type of questions in relation to hemoptysis. Unfortunately being in hospital I don’t have the time where I can really sit down and answer your emails…So I thought  it wise to bring back this post about Hemoptysis for a Second run. It was originally posted about 3 months ago.

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I thought I may as well share my experiences with hemoptysis ( bleeding of the lungs) since its a daily occurrence for me just like taking enzymes.

First a quick definition

Hemoptysis or haemoptysis is the expectoration (coughing up) of blood or of blood-stained sputum from the bronchi, larynx, trachea, or lungs .

I had my first experience of hemoptysis when I turned around 16 years of age. I still remember it quite clearly I was having physiotherapy a couple of days into IV antibiotics on the out-and-about program (a program where you go home on iv’s) Now at this time I wasn’t really aware of the dangers but became extremely scared when the nurse refused to answer any of my questions while constantly repeating that’s for the doctor to talk to you about..Ironically the doctor came 45 minutes later and I had fallen asleep.

Over the next couple of years I had small bleeds and everytime I would research it for a few days afterwards.

My first big bleed occurred after diving under water on a summer afternoon. Anyone that has experienced bleeds knows the instance they occur, it is a feeling that can’t really be explained. It does not usually hurt, it feels like a warm wheeze or slight vibration and in my case a sensation that something is dripping inside my lungs..

The bleed that occurred on this summer afternoon scared me to the degree that I still get a feeling of dread thinking about it..The feeling that you have no say in when the bleeding stops is horrifying and all you can do is stay calm and sit tight..

In my instance there was no need to cough the blood up as it was so pressured it was spraying. I can still see the stainless steal laundry sink sprayed with blood and the mass that was filling the bowl was clotting before it could drain away.

Its funny but I was so naive with this new experience once the bleeding had stopped I simply walked back to the pool area and sat down..I remember my mates commenting on how pale I looked. (These days I would call the Ambulance quick smart)

What I have learnt since that first massive bleed is priceless in terms of staying calm which helps alleviate the bleeding and the general aftermath where you hopeless and out of control..

In the situation of a Lung Bleed one is always going to panic somewhat If you don’t your not fully aware of the danger or are simply new to this horrendous part of the Cystic Fibrosis disease.

But a few things can be done to help reduce your panic and hopefully stop the bleed or at least slow it down allowing for you to get yourself to hospital or an Ambulance to arrive.

Firstly I have plastic cups around I use them to drink from so I have heaps..The average plastic cup is 200 mls so when a bleed of substance occurs I start coughing up into the cup..Now my mum finds this scary as you can clearly see how much has actually come up, but in my case knowing this calms me. I can see exactly how much is coming up which is good because you know your not going to die from 200 mls which in this situation is reassuring. I have a rule anything over 30 Ml of pure blood (not mixed in with mucus) I call the ambulance. This is something I have discussed and made a plan with my doctors.

Another practise I implement in times of massive bleeds is to make my mum aware of what naturally calms me..That being a bottle of water, a cool towel over my shoulders and a small bedside fan blowing directly on to my face..There is something I find reassuring and calming about having air blowing over my face..

In terms of coughing the blood up..I only cough once I feel it filling up..I’m under the belief through my own experiences aggressively coughing up the blood while its actively bleeding is only going to prolong the process as a vital clot may be forming and if your aggressive coughing like one would during physiotherapy your likely going to cough it up causing the bleeding to continue.

The reason why I call the ambulance rather than getting someone to drive me to the hospital which could possibly be much quicker is the fact that patients arriving in the ambulance get seen straight away and you don’t want to be sitting in emergency having a lung period whilst catching someone’s hybrid swine/bird/camel flu.

The catheter in the lung

The catheter in the lung

Once I see a doctor I make sure they start a saline drip and order a lung X-Ray as bare minimums, you would be surprised how long it can take them to come to that decision but having several million degrees in CF they usually listen to me and order my X-Ray..

Now if the bleed is constant they may offer the option of having a pulmonary Angiogram Embolization (what they d0 with me)..It’s a procedure where they thread like a picc line or to be more precise a catheter up through your artery in your leg through to your lungs..The hope is that they can inject a radioactive dye and see where the dye is leaking out of the lung hence directing them to where the procedure is required, where a medication or synthetic material called embolic agents is placed through the catheter into the blood vessel they believe is bleeding to prevent further blood flow to the area. Thus hopefully preventing further bleeding.

Typically Ambolization should last at least 18 months as the vain’s do regrow.

There are certain risk factors that go with all procedures however that is something for you to discuss with your Doctor, however Pulmonary Angiograms are the standard treatment for Hemoptysis from the lungs. There are other treatments used to treat lung bleed including drugs to slow bleeding. A few years back I tried Tranexamic Acid it seem to help with constant slow dripping bleeds in my case.

Are there things I can to do to prevent or reduce to the chance of future Hemoptysis?

Yes there is..It sounds so simply but we know it’s not..Stay healthy as possible..And when you start getting a chest infection act on it straight away..In the past when I was much healthier as a young child, I would feel a chest infection coming on but I would say to myself “I will just wait until I see my doctor in a couple of weeks”. Well these days I have learnt through natural maturing to get an appointment straight away and even have some meds on hand as in my clinic they know I’m experienced and mature with my health so if its a Friday afternoon and I ring up stating I have a chest infection brewing they usually give me the go ahead to start nebs and oral cipro and to come see them the first thing the following monday..These few days of getting to infection earlier than you would can greatly help in reducing the damage the chest infection does to your lungs and ultimately reducing the the chance of hemoptysis.

Its been 20 months since my last Pulmonary Angiogram so I’m constant weary about future bleeds..

Which brings me to the point about how hemoptysis plays tricks with your mind or at least it does with mine..

After every bout of bleeding (no matter how big or small) I go into a shell and pull back from things depending on how serious the bleed is, it can be anything from a day or two to a couple months (Months in a shell is not fun)..

It always seems to be the case when I get my confidence back I have another bleed..Now I have read and heard many opinions about this factor of losing your confidence in regard to hemoptysis so I’m going to share my own opinion formulated from 6 years of constant lung period.

I believe that no matter who you are bleeding from a place your not suppose to and can’t see is going to cause some psychological issues..Depending on what type of person you are they are going to differ..I believe its normal to go into your shell after a bleed and its a smart thing to do, because it allows your body to relax, settle and repair however you must after a short while continue on with your life, being weary knowing your signs and knowing when you should just rest for a moment and settle..You can’t let Lung Bleeds rule your life buts silly and naive to say they don’t play some role in the direction we take. For instance you won’t see me playing contact sport..So all in all…You own your body…You know that body..You know your cough..You know the tickle in the back of your throat..So you will know your Lung Bleeds and know what’s best for you.

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Sources:

Pulmonary Angiogram on Wikipedia

Hemoptysis/lung bleeds


For Fun.

PeGsOn

Living in the Present…Aware of the Future

November 12, 2009 Posted by | Repost | , , , , , , , | 5 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

Hospital Stay Day 9 – Video Blog

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PeGsOn

pegson1986@hotmail.com / twitter.com/pegson

November 10, 2009 Posted by | All Posts, Hospital Stays | , , , , , , , | Leave a comment

Hospital Stay Day 8 – Off the Maxillofacial team, funny coversation, lung update

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BRAND NAME: ULTRA PAINFUL STING WASH

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Ok so first off let me start by saying I’m still in hospital and probably will be for sometime to come, however Today I’m official off the maxillofacial service…

What does this mean?

Well My wisdom teeth surgery is healing nicely and that there is no need for me to be under there service in the hospital..so basically if there wasn’t CF factor I would be sent home tomorrow morning…

So I still have to continue with my Oral mouthwashes that sting like hell, and I’m still not allowed to eat anything that will get stuck in my teeth because that could facilitate infection along with nothing RAW although I’m not one who likes a still galloping and mooing T-Bone..

Something on the funny side and a little X rated so readers beware..One of the registrars who came to discharge me from their service started to list the things I can and can’t do and for how long..I warn you, you won’t believe me but anyhow He said this to me.

DOC: So are you married Arron?

ME: Hahahaha nah I’m not

DOC: Do you have a Girlfriend?

ME: Uhmm no not at the moment, not for a while, been going through an ultra dry patch something close to the Gobi desert (In a joking tone)

DOC: Well are you sexually active?

ME: Lol what?

DOC: Ok so while your teeth are healing your mouth is going to be very susceptible to infections especially from things alien to the mouth.

ME: Alien…….ok (thinks whats my doctor smoking)

DOC: I guess what I’m saying is don’t kiss and refrain from sexual interactions of the Oral kind until you can chew your food with no pain (He is dead serious no grin to ease the akward moment, but I guess being able to chew with no pain means your mouth is healed)

ME: oh…k….so yeah that shouldn’t be a problem..uhmmmm.

DOC: Ok Arron everything seems good, might pop my head in through the week if your here.

ME’ Rightio cya mate.

So yeah I guess it makes sense not go around having oral sex with strange women straight after wisdom teeth surgery, but I thought to myself who does this doctor think I am some kind of sex freak that is so addicted to sex I’m forced to escape the ward and struggle into town with my gown flapping half done up in the breeze for a beer hoping to impress the ladies with the size of my IV Pole…All in order to go nom nom nom nom…pretty funny, well least I thought so…

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PuffinMuffin

On to my Face, its still swollen but no where near the extent as 2 days ago its almost back to normal in that department…The pain has taken on a new wrap with the pain changing from a sharp constant shooting pain to now a dull ache. However still quite painful. I’m currently taking codeine phosphate to ease the pain..It works but not like Panadole..My Skin is looking really battered now the swelling has gone down…When my face was swollen It was like you could see no imperfections, not even little scars because my face was so red and puffy…Now when I look in the mirror I can see bruises starting to form showing what looks like the out line of some kind of facebrace to keep your mouth open during surgery, Tiny little blood blisters where the bruising is more towards the surface rather than deep, A ton of yellow brusing but it can’t be seen in all light, and quite a few pimples & Zits from not being able to properly bath my face for 4 days…So I need some sun and vitamin E cream.

I will just quickly update you on the lungs..

They are still very blocked up with mucus although now my tooth/mouth pain is starting to come under control I am starting to find it a tad easier to clear the mucus…My O2 sats are still not back to where they were 96%, currently my O2 is  sitting at around 93% on room air. As for treatment I’m doing Tobramycin and Ceftazadime via IV and Ciprofloxacin orally..Along with all my over daily meds.

As for how long I will be in here? It”s hard to say considering we are now dealing with a chest infection.  In all Probability two weeks maybe if I’m lucky and responding well 1 week than home on the meds for the final week…so It’s a play by ear situation at the moment….

As for now I’m going to get some sleep.

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PeGsOn

Pegson1986@hotmail.com / twitter.com/pegson

November 9, 2009 Posted by | All Posts, Hospital Stays | , , , , , , , , , | 8 Comments

Should couples have cystic fibrosis test

ALL couples considering having a baby and women in early pregnancy should be offered cystic fibrosis screening after a five-year study detected 80 per cent of high-risk couples, its authors say.

Babies are screened at birth for the recessive genetic disease, which affects one in 3000, but routine carrier testing, which costs $250 for a full screening, is not offered and is not covered by Medicare or by health insurance.

Researchers tested 1000 couples considering pregnancy as well as women in early pregnancy (less than 14 weeks) at a public after-hours clinic in Newcastle between January 2003 and December 2007 by extracting DNA from mouthwash samples.

There is a one-in-400 chance of two carriers forming a relationship and a one-in-four chance of them having a child with the disease, which affects organs (especially the lungs and pancreas) by clogging them with thick, sticky mucus and considerably shortens life.

The study, published today in The Medical Journal of Australia, found 27 out of 730 people tested who had no family history were carriers. Of 270 people who had an affected family member or a child with cystic fibrosis, 126 were carriers. There were four couples deemed to be at high risk of having a child with cystic fibrosis, two couples with no family history.

One of the women was six weeks pregnant but further testing determined the child to be unaffected.

That couple, as well as two of the other couples, decided to use IVF and test before implantation for any future pregnancies.

The other couple fell pregnant six months later and decided to abort the foetus because it was affected.

One of the study’s authors, Louise Christie, a nurse and genetic counsellor at Hunter Genetics, said testing should be offered to everyone regardless of risk factors as it enabled couples to make an informed choice about reproduction.

”Cystic fibrosis is a common and severe disease that places considerable emotional and financial burden on affected individuals, their families and health services,” Ms Christie said.

”It would be beneficial for couples if it was funded by Medicare because from our research it does show that it would be valuable.”

Kristine Barlow-Stewart, the director of the Health Department’s centre for genetics education, said she supported testing but only where ethnicity or family history put people at a higher risk. ”Cystic fibrosis testing is not appropriate for all of the population,” Associate Professor Barlow-Stewart said.

She urged more GPs to ask patients about their ancestry because northern Europeans were more at risk.

The President of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists, Ted Weaver, said the college recommended screening only for suspected carriers.

”Clearly the cost to the community of caring for a child with cystic fibrosis is considerable but then who’s to know what that child might achieve during their life that would bring economic benefit?” Dr Weaver said.

”I think it’s reasonable that people are offered the test but how that test is funded is really a matter for public debate.”

Sydney’s Westmead Children’s and Royal North Shore hospitals and a few private clinics do tests.

A laboratory manager at Royal North Shore’s laboratory and community genetics department, Anne Proos, said about 1000 people were tested there each year, 60 per cent of whom were pregnant.

The test picks up at least 70 per cent of cases for the most common gene mutation and more than 80 per cent of cases for the full screening.

What do you guys think? I personally think it should be compulsory to have the test no need having CF put upon more innocent souls.

November 9, 2009 Posted by | All Posts, Articles | , , , | Leave a comment