Colin O Driscoll

Dear Joe,
I wouldn’t worry too much. An FEV of 122% means that you are doing better than average for your age, as also indicated by things like being able to do an 8-minute mile. I would just ask for regular monitoring, say every 6 months, just in case there’s a problem.

Even if you have an ongoing PF, the decline time varies a lot. I had CHP…[Read more]

Before my transplant, I suffered from CHP, another type of PF. As the condition progressed, it became more and more difficult to breathe while lying flat. A couple of pillows definitely helped.
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My double lung transplant was in October last year. I am currently halfway through a rehab program.

On some of the issues raised:

I had chronic HP, which is a form of PF something like IPF as far as symptoms and prognosis is concerned so my experience might be relevant to others. I had been following a rehab course to improve my general overall…[Read more]

I had CHP. I have had bronchoscopies where they take small tissue samples and with lavage (washing one lobe of a lung with saline to pick up what the immune system was up to.)  These have been done under varying degrees of sedation (from nothing apart from local anaesthetic through to being virtually out with no recollection). None of them were…[Read more]

Hi Kris,

I can only tell you about the prep here in Belgium, which are similar to elsewhere in Europe. I imagine that it doesn’t differ too much from the US.

Health screening
There are a whole series of tests to ensure that you are reasonably healthy, apart from your lungs, and that you don’t have pre-existent conditions that could flare up due…[Read more]

I have had similar problems to David’s with side effects from immunosuppressants since transplantation, which was around 6 months ago. Health providers try to gradually reduce the dosage of some drugs, but that has not gone very far with me yet. Any research on reducing or eliminating these drugs would be very welcome.

Cancer is quite common, due to the immunosuppressants. Fortunately, most of them can be treated if detected early enough. This is why regular follow-up is crucial, as is prevention, such as taking precautions against sunburn.

Chronic rejection is a common problem later on. There are some drugs that will slow it down