Lung transplant assessment

I have recently had an appointment with Harefield regarding a lung transplant. I have IPF & am now on oxygen 24/7, mobility difficult even around the house. They feel I would be a good candidate for transplant but before under going the assessment they want me to attend a three week PR course in Germany. As this course is quite costly, before, I agree I need extra information to consider its benefit. Has any one attend this clinic if so was it of benefit. Thanks viv

4 Replies

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  • Hi

    Anyone being considered for transplant has to have done pulmonary rehabilitation - any course in the UK would be suitable. So it's a bit strange that a course in Germany is being suggested. The cost is a big issue but then also the amount of travel involved etc.

    Have you been told why a PR course in the UK is not suitable?

    Mark

  • just a quick point Mark, not everyone has to have done a pulmonary rehab course when being considered for transplant. I am on the active transplant list and have been for 4 months, being 38yrs old and having end stage IPF and PH i have not attended any rehab courses.

    I do however agree that its unrealistic to send this person to Germany for something that can be done in the UK

    Tony

  • Thanks for your reply. I am already attending PR but have been told in no uncertain terms that I have to attend the clinic in Germany. Apart from the cost, what worries me mostly is the travel involved flying very difficult even with my portable oxygen concentrator. But have been given no alternative!

  • I would ask for further clarification and information - I have seen some vague information about a research trial being carried out in Germany about pulmonary rehab and transplant patients. As far I can see the trial isn't recruiting patients.

    As you say the issue of travelling to Germany is huge - so to be told you have to go there seems a bit odd.

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