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Lung function post 2 years

Hi, I'm just past my 2nd birthday and doing really well. Although I've had a repeat lung function today as they are poor since transplant and I know today's wasn't great either. It's either from the transplant or fungal pneumonia I had afterwards. I can manage day to day fine. I do the school run every morning walking and I'm better than I was at first. But I wonder how others are and if there is chance this will improve or if I need to be doing anything to help this, never been a huge fan of exercise but do weekly yoga now too. Thanks

Answers

  • I was supposed to have had a lung function test before my transplant along with the various other tests I had, but for some reason the lung function test never got done.

    I have had them since though having suffered GvHD, which thankfully opnly affected my skin. The lung function test was done as a matter of routine each time I was reviewed in clinic at Nottingham after a few cycles of ECP (Photophoresis).

    Generally I've always found my lungs to perform well and have not had any difficulty with the tests, though when I'm out and about I do find that I get breathless more easily than I used to, even just walking briskly with the dog can get me out of breath. For me I have accepted that this is possibly the new norm.

    It seems to be a common complaint post transplant but if you're in any doubt speak to your medical team, who will either confirm that what you are experiencing is within the norm or arrange further tests if necessary.

    All the best,

    Steve
  • Have you had a CT of your lungs done? Chronic GvHD can sometimes only become apparent once it's happened. I don't want to worry you unduly but it might be worth asking for to put your mind at rest.
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