2nd opinion on possible Lung Transplant? How do we find a private consultant to give us a review on whether a Transplant is possible?

[lullahbellepurdy]

Hello All,

I am trying my very best to help close friends of mine, brother and sister, so I don't quite know the in's and out's of her condition but will try my best to tell you what I know. They both work ridiculously long hours just to get by and can't do it all on their own, their mother who is 61 has Idiopathic Pulmonary Fibrosis

She was diagnosed in 2009, to date her lung capacity is 17%, not sure of any medications she's on (sorry), her consultant at the royal Brompton hospital said that she wouldn't be suitable for a Lung Transplant, down to the fact that she may not pull through, but he's not exactly a nice character and we don't hold much faith in him at all, in July of this year she went to Greece for stem cell treatment, and they stated that she would be a good candidate for Lung Transplant, but how do we go about finding a consultant privately within the UK who will review her case and give us a 2nd opinion on whether a Lung Transplant is a possibility?

Would extremely grateful for advice advice given and thank you very much in advance!

[peege]

Hi there, I think your best bet is to ring the blf helpline on 03000 030 555 .... I do know that the Brompton is possibly the best in the UK.

I wish you well in your mission.

[stone-UK]

Hi

Make enquiries with your local BUPA hospital ?

[seyre]

Hi, My consultant referred me to Wythenshawe for a possible lung transplant. I was admitted for tests and then put on the list. I believe the age limit is 65 and they give you a full mot to make sure you are suitable. People who are on the list are severe so I don't understand your consultant saying you wouldn't pull thro the op - that is why they do it. Good luck. Sue E

[lullahbellepurdy in reply to seyre]

Hi what sort of tests did u have?

[seyre in reply to lullahbellepurdy]

Bone scan, mammogram, teeth checked, kidney check, blood tests, one where they go in an artery in your groin to check your heart valves, scans. It certainly is a full check and at least you get to know everything else is working even though your lungs aren't.

[libby7827]

Hi, to be suitable for a lung transport you need to be as fit as possible, well nourished and weight appropriate, other than your lungs. There is also the question whether you have osteoporosis and I was refused on that ground alone as i do have it and the chances of the ribcage crumbling away during the operation is very high. Once I knew I couldnt have it I felt a lot better, no more worrying and wondering about it. The survival rate to 5 years is only 50% after a transplant, and I have already lived 4 of those without and don't think I'm going anywhere for a while yet - could be wrong though! It's a diabolical operation with a three month recovery and a lifetime of immunosuppressive drugs which create many problems just on their own. Not trying to discourage you, just to say that it's no picnic and the facts need to be weighed up very carefully.

Useful link here

nhs.uk/conditions/Lung-tran...

Libby x

[Toci in reply to libby7827]

Ditto to all you said Libby.

[seyre in reply to libby7827]

Please can I ask how old you are Libby and how you cope or how serious is your condition. I know people are worse than me but not sure I can carry on without a transplant. Any comments, advice from you would be appreciated. SueE

[libby7827 in reply to seyre]

Hi Sue, sorry, just seen this. I will pm you in the next day or two. Happy New Year! LIbby xx

[lullahbellepurdy]

No i havnt met mr bently. My mum saw dr carby at harefield

[seyre in reply to lullahbellepurdy]

I see Dr Leonard at Wythenshawe

[BugsBunny]

Hi there, the best way to find a private consultant is to google BUPA Consultants. I must say that I have BUPA health insurance but I use the NHS as they have the best respiratory consultants. I am over weight (something I am trying to rectify) and so I am not eligible for the transplant list. Life goes on with or without being on the transplant list. I would suggest that your friend exercises whenever she can and she tries to stay happy.

Kind Regards

Mandy

[MarieW-F in reply to BugsBunny]

I have 8lbs to go before I reach my assessment weight - its a long old haul isn't it? But as you say we just have to get on with it.

Marie

[MarieW-F]

I will need a transplant and my consultant explained to me that it was all about balance. You need to be ill, but you also need to be fit enough to pull through the operation which lets face it is a massive one.. As someone says - a barage of tests are required and whilst you might be suitable at one point things can happen as a result of the test which would make you unsuitable. I have had a few and these have been ok but there might be one which isn't which means I can't have one. You can be too ill to have a transplant. In terms of private consultants, I know my NHS consultant does private work but I think in trems of getting on the list this might be managed by the NHS, if you understand what I mean. Good luck finding solutions/answers to your questions.

marie