Hi ,has anyone had a lung transplant ,?? If so would what are your views on having one

[bobbie]

[MarieW-F]

I haven't had one but I have been told i will need one eventually.

As to what I think of them? Well I swither between wanting one, and not wanting one. The days when I feel well make me feel almost invincible and I think that if I am offered one I would say no. Then other days I wish I just had the means to take a deeper breath. You also look at the survival rates and if one thing makes me really swither is whether I want to put myself through it all for a half dozen years extra life? Everyone is different. At the moment I want one but I may not get through assessment. Sorry I can't be anywmore helpful.

Marie

[bobbie]

Hi Marie ,thank you so much for your response ,I feel exactly the same about having one as you do ,I really don't know ,half of me is saying yes but the other half is saying no ,sometimes I just wish one way or another the decision would not be mine ,as you say you and I may not get through assessment and I think in a way that would be easier for me then I haven't had to make such a hard des ion ,, when it was first put to me I was like yes of course but now I really don't know ,, it's so hard ,, thank you Marie x x

[sgbr in reply to bobbie]

Hi I have been through the assessment and been told I can go on the list but I am so scared I don't know what to do. I have to go back to Harefield in nov to talk to the doctors but I still don't know what to do Sue x

[bobbie in reply to sgbr]

Hi sgbr ,it is November I have to go back to discuss too ,I've had my bone density scan last Friday , I'm at the stage where I'm thinking just go along with the tests at this moment then make a decision ,it's so difficult ti decide isn't it ,, hope your ok x

[sgbr in reply to bobbie]

I thought it was a hard decision to make but at the assessment they give you a folder giving you all the facts and there is so much more you didn't realise after the transplant. It's a lot to take in

Sue x

[bobbie in reply to sgbr]

Hi sue ,would be interesting to read the folder , just really confused as I've also been told that having one doesn't actually make you live longer ,, don't know if that's true x x

[sgbr in reply to bobbie]

They did say to me I could live longer without one as there are no guarantees but I have seen people on tv that had one 25 yrs ago obviously he was younger

[bobbie in reply to sgbr]

Really ,, I don't even know if there is a age limit to this of either

[sgbr in reply to bobbie]

When my consultant first mentioned it to me he said up to 65

[bobbie in reply to sgbr]

O well I have a while yet I'm 52

[Toci]

Hi. I was told I needed one but, after assessment, am not a suitable candidate so the decision was taken out of my hands. Tough one for you.

[bobbie in reply to Toci]

Hi toci ,yes it is so difficult. You would think its a simple yes or no ,but its not is it when actually faced with it ,, so difficult ,,

[sadie1951]

Hi, I was assessed 3 years ago but found unsuitable. When I was initially told it may be possible I was euphoric, but by the time I'd read all the facts and seen a documentary on tv, by the time I had my assessment I had already more or less decided it wasn't for me. The life expectancy rate, 9 out of 10 will survive at least a year, 5 out of 10 will survive 5 years, which means 1 out of 10 dies in th first year and 4 out 10 die between year 2 and 5, to me is low. The recovery period is lengthy and a nightmare and a suppressed immune system for the rest of your life leaves you constantly open to infection. I've already survived 3 years since I was refused, ok, not easy years, but still here. It's funny, before I knew all the facts and figures I thought it would be a very easy choice! Sadie xx

[bobbie in reply to sadie1951]

Hi sadie. Not very good them figures ,, I'm so glad that your still here going strong ,looks like you fully explored it all , thank you xx

[Hidden in reply to sadie1951]

Hi sadie spot on yep thats what i have read too

[EeJay]

Yes, 6 months ago. I feel great, I have been luckier than some and hope that this continues.

I was very bad before I got to the top of the list, but, like you, when i was under asessment, wondered whether i would be better going on as i was.

The medication is with me forever, and there is no saying there will not be rejection or infection. But it is so worth it. I could immediately do the things I could not before, like clean my teeth standing up and go straight on to wash my face; I enjoyed the smell of a doctors perfume instead of feeling ( sorry, forget how I used to feel when smelling smells!); I did step exercises and cycling before leaving hospital on day 15. 6 months later I go to the gym, do walks of about 8 miles, work ( but not full time) and look after my husband (who used to look after me).

My advice would be to go through the assessment and rely on your team. Speak to them about your concerns: they will tell you most people feel like that I expect.

I know at one stage about a year before the op I had started to feel anxious each evening and worried that when I got the call I would "disintegrate". I mentioned it and was told the team would be used to that possibility. Actually I felt strangely calm because I was handing myself over to the procedure.

Good luck, whatever you decide.

Elizabeth

[bobbie in reply to EeJay]

Hi Elizabeth ,really good to hear of your success with your transplant ,,it is so much to take on board ,I really don't know what to decide ,discussing it with my family and the response is ,,that its my decision really ,thank you for your response and keep well x x

[blake03 in reply to bobbie]

i have ipf and am 66 yrs old i have thought about asking earlier but am probably too old now but i did read that you can have a single lung transplant and the new lung isnt affected by the other lung left in

[sadie1951 in reply to EeJay]

Hi Elizabeth, that's fantastic, certainly sounds like you made the right choice, oh the things you mention, cleaning your teeth standing up, and other people's perfume! I know those things well! You are doing incredibly well and all my very best wishes to you for the future. He who dares wins! Sadie xx

[MarieW-F in reply to EeJay]

Thank you for this Elizabeth.

[Hidden in reply to EeJay]

You have done so well Elizabeth,congrats to you!

May you continue to feel the benefits of it.It must be so wonderful to get a second chance!

I wish you the best of health,now,& in the future,

Love Wendells xxx

[nixy]

bobbie, only just seen your post and just wanted to tell you about a friend of mine who had a lung transplant two years ago. She was very ill could hardly breath and was on oxygen full time. For some reason she was only given one lung although both her own lungs were useless. She was out of hospital in a couple of weeks. I honestly could not believe the change in her, it was wonderfull to see her out and about again. To keep healthy as possible she eats good food and does swimming, water aerobics and tries to walk as much as possible. She takes many tablets to stop rejection . The queen Elizabeth hospital in Birmingham have an amazing team looking after her, she sees them once a month now, and they have been a huge support. Yes she gets fed up at times with all the tablets she has to take but honestly seeing her now is like seeing her years ago when she was fit and well. Having a lung transplant is not an easy road to take I understand that, and the decision has to be yours and yours only. You will get all the support you need from your hospital. My friend went through all the tests before making her mind up so there is plenty of time to ask questions ect., Sending you good wishes for the future whatever you decide to do. Janice x

[bobbie in reply to nixy]

Janice ,thank you for your reply and so pleased all has gone well for you friend ,I will bear in mind everything you have said and best wishes to you both ,thank you x

[seyre]

Hi, I was referred for a transplant 2 years ago. A year last February I went for the assessment which said I was suitable. During this time I have come across many reasons not to have it but also reasons for it. In January this year I was admitted to hospital seriously ill, acedotic, I was told and my family were brought in and told I may not pull through. This brought it home to me my options and I now really feel to have any quality of life I really want to go ahead and have the chance with a transplant. I was called in in May this year and unfortunately the lungs were not good enough but put it down to a trial and now wait longingly for the chance again. In donot want to end my life struggling to breathe and totally dependant on my family for life gonna take the chance while I can. Good luck with your decisiion. Susie

[bobbie]

Thank you susie ,think that's the problem we think we have time to make that decision but in reality we really have not because there is really only a limited time slot for a transplant before things get too bad ,I really hope that you can get the chance for yours very soon and all goes well and you can come back on here to tell us all about it ,take care and thank you x

[NicolaM191]

Hi I have just come across this page, I had a double lung trdnsplant last year.

The doctors will discuss with you the window of opportunity. They would not allow you to have it if you didn't really need it at the moment, but they wouldn't let you get so ill that you would be to poorly to operate.I Felt rather guilty that it was my decision and if anything happened to me it would have been my fault for being selfish, so was reassuring to hear that the doctors thought I needed it.

I too was extremely anxious about it all, used to wake up having panic attacks etc, but when it came down to it, I just had no quality of life anymore, was on oxygen 24/7 could barely walk from room to room, and I had children to look after, so it was a really easy decision for me in the end. I needed it! Wasn't going to see out the year if I didn't have one. I also had a really fantastic recovery, was out of hospital completely as an out patient after 2.5 weeks!!! And what a difference it has made to my life!! I couldn't agree with Elizabeth more, things like standing up to brush your teeth, reaching up for things, and the first thing I noticed was how strong my sense of smell was! Only it doesn't stop there, I now run 5k twice a week and also go to the gym 3 times, I'm able to do things with my children that I could only have imagined before, such as bike rides, holidays etc! It is a lot to take on board, and is a lifetime of medication, but for me, it's totally worth it.

Hope this has helped, and best wishes.

[mypeppa in reply to NicolaM191]

That is fantastic..so pleased for you !!! May I ask your age ?? You must be younger as you have children..I have been asked for about the last 4 years to consider this opp but a friend had a double lung 4 years ago and seems to be in and out of Harefield.