Recent content by kyeev

  1. K

    Knowing when it's time?

    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...
  2. K

    Knowing when it's time?

    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...
  3. K

    10 Years with my New Kidney from Mom

    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)
  4. K

    10 Years with my New Kidney from Mom

    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...
  5. K

    Knowing when it's time?

    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...
  6. K

    Anyone with M470V polymorphisms

    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...
  7. K

    Saw this and had to share. People experience running like they have CF

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

    The Other Half of the Battle

    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...
  9. K

    Anyone with M470V polymorphisms

    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...
  10. K

    Can anyone help me to help my son?

    Good post "mommy w/cf" !
  11. K

    stomach aches

    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...
  12. K

    How careful are you?

    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...
  13. K

    Powerlifting

    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...
  14. K

    Won't ask agin after today PROMISE

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

    Won't ask agin after today PROMISE

    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...
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