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Oh I see. Well hopefully you will be listed next month. No, I haven't had my MHC antigens looked at yet. Still at the stage of getting all my CT scans and abdomen ultrasounds and cardiograms data updated. I have heard of a few people who been listed because of frequent exacerbations and...

Wow. I can't actually believe they have only listed you now, with you being on 4L of Oxygen at rest. That scares me to be honest. It's definitely time for you to be listed. In my naivety, I'm hoping to get listed before I need oxygen. I've been told because of my height (average) and my common...

Thanks for answering those questions. I guess the only other thing I'd like to know is, how is your exercise tolerance. Can you exercise similarly to a "normal" person? Like, can you do something like hill walking with other people and not run out of breath? (Or whatever exercise you do etc)

10 years is awesome! Well done. Any tips for those of us facing transplant? Like, are you completely regimented in taking your anti-rejection drugs, never missing a dose even by 5 minutes? Do you wear masks during cold/flu season? Do you avoid certain foods or avoid doing the gardening or avoid...

Hi mom2two. I'm kind of in the same position as you, I'm 42 and my FEV1 is about 30%, and my burden of care is increasing year on year. Just had my first transplant team meeting a month or so ago. I get haemoptysis and produce a lot of sputum and end up in hospital for IVs every couple of...

Yep, your son definitely sounds like he has CF, but it aint M470V that's causing it, that's one thing I'm sure of. I'm a geneticist! It is rare for a full sequence to show up nothing. Are you sure they "sequenced" or "scanned" or "screened"? Big difference in terminology. They've possibly...

Very cool! I wish I could even run 200 metres these days...

Great post Randford. One (slightly tongue in cheek) solution is to leave the Good Ol' USA. We are very lucky over here in Europe to be able to work and have all our healthcare covered by the state. Reading your post, really makes me appreciate how lucky we are over here. I've had a 20 year...

Guys, I think we have some mis-information here. M470V is a polymorphism. Polymorphism means "change in genetic code which is not disease causing". In fact about half the CFTR genes (alleles) we see in general population will have M at position 470 and the other half will have V at position...

Good post "mommy w/cf" !

Well, there's your starting point, up the enzymes. Has he changed his dose as he's got older? Or is he on the same dose he was on years ago. I used to take 5 creon as a kid aged 9 or 10, then had to up it every year as I got bigger. You can't expect your body to be able to manage on 5 or 6...

I get the flu vaccine. I don't mix with other CF people (mainly cos I would infect them rather than the other way round) I conciously try not to touch my mouth/nose/eyes after touching something I percieve to have a high chance of carrying the cold virus. Like after wiping my sons nose mostly...

Yeah, must of us have these weedy arms which are actually the result of not doing any heavy lifting or performing any regular manual labour whatsoever (rather than being the fault of CF - like I thought). I went to the gym and after 3 months of free weights working on chest, arms and back (and...

That's amazing Deb. No IVs in 3 years. How did you find the operation? Was there a lot of pain afterwards?

Yes, surgery was discussed to remove my lung as well, as its nothing but a cess pit apparently. But it was decided not to do it cos of potential problems down the track for transplant. And I wasn't sick with it at the time. Doctors motto do no harm etc. It is a pain having to clear the left lung...

Hi, I was just wondering if you could give us all a run down of your final few years before transplant. How sick were you? Was it your lung function or constant infections that pushed you towards transplant? At what stage did the doctors talk about transplant? e.g. were you on oxygen etc? Did...

Hi, if you have cultured Pseudomonas for a long time and especially if your sputum notes come back as mucoid, then they are more than likely Pseudomonas aeruginosa Biofilm structures. Crush one up and you will see the tell tale green suckers inside. This brown ball type structure helps protect...

Hi, I have this mediastinal shift thing too. My left lung gave up working around 10 years ago and since then my right lung has expanded to take on the extra load. That pushed things sideways causing the shift. The left lung receives 5% of the blood flow to my lungs, apparently, right lung gets...

As a confirmed night owl, here are a few tips I've picked up to fit in with the early birders. I too, am one of those people who can easily stay up to 2am regularly and can do a 4am-er on occasion. I've even stayed up til 6am once or twice but that's just ridiculous. Apparently 2/3 of people...

Yeah, I didn't feel any burning in my lungs or nose either. And I didn't even think I suffered too badly from heartburn, although looking back I did avoid certain food and drinks and had started to take a fair bit of Gaviscon some nights before bed. But sure enough when I started the Omeprazole...