IPF and lung transplantation

Hi all so I have IPF and have had a referral done for an assessment at Newcastle hospital for a lung transplant, my questions are how long did it take for the process of having the assessment for eligibility to being placed on the transplant list to having a transplant? And is tjere anyone who wasn't eligible? sorry for the questions, I'm just so worried that I may not be eligible for a transplant and even if I am I'm worried I'll not find a donar in time, I'm only 30 and I have a little girl

[Hidden]

Hi I am so sorry you are having to suffer this awful illness specially at so young an age. I can't answer your questions I'm afraid but I am aware as we all are of the shortage of donars. What I will say is that because of your young age I think you will be seen as a priority.

I have heard of folk being turned down usually because of other health issues such as heart problems. Try and stay as strong as positive as you can though I know this isn't easy.

I am sure others will be in soon who have experienced this and can give you better answers. Take care. x

[Hidden in reply to Hidden]

Thankyou very much

[Brecksfield]

Hi there.

I too have IPF, and my consultant is currently filling in the forms for my lung transplant assessment, all that is needed is an up to date set of results of my pulmonary function test.

Here is a link that gives a lot of information about the criteria that has to be met for lung transplantation.

At my last PFT, my FVC was 64%, TLC 56% and my DLCO 34%, I desaturate very quickly on exertion.

I am sad to hear you have this disease at such a young age, I am 59.

Best wishes to you,

Tony.

odt.nhs.uk/pdf/lung_selecti...

[MarieW-F]

So sorry to hear this but I am under Newcastle and they are the best! You will know very quickly after your assessment if you are eligible to go on the transplant list and I would imagine given your age etc you will go on quite quickly. However the time it might take to get the transplant is almost impossible to say. It will all depend on where you are on the list and the type of lungs coming forward. Not all will be suitable - they can be too big or too small and a number of other issues can affect whether they are right for someone.

Good luck - its difficult to say not to worry, especially as you have a little girl but what I can say is try and stay as healthy and fit as possible. I know of one person who wasn't eligible. He was too poorly. You need to be fit enough to get through the operation - he sadly wouldn't have been.

marie x

[Plumbob]

Hi ejbid

Sorry to hear about your predicament. ... I am going to the Newcastle Freeman for assessment at the end of this month, with the view to a possible lung transplant.

They will be carrying out test and scans to assess transplant suitability which will include the condition of your other organs, as well as checking to see if you have any other underlying health issues which may be a detriment to transplant and recovery, they will also look at mental stability ( that's the worrying one for me as everyone thinks I'm mad as a box of frogs ???). I understand that on the last day stay of my assessment that the MDT (multi-discipline team) have a meeting in the morning to discuss your case then pass on their findings regards suitability to you on the afternoon. So your not in limbo awaiting their answer.

Will keep my fingers crossed for you that you get an early appointment date and things go well.

Best Wishes

Owen

[Hidden in reply to Plumbob]

Thank-you and please keep me updated regarding your assessment and good luck. Emma