I have an appointment to discuss lung transplant but I have no real social support, just one elderly sibling. I did mention this to the girl on the phone but she was very breezy about it and just said when I'd had the transplant I wouldn't be let out of hospital until I was ok and the transplant would have fixed me so I would't need any help. This all seems very unrealistic to me. I know that people have all sorts of problems post transplant
Is there anyone that's gone through transplant alone?
Don't have experience of support for transplant procedures or recovery. I would suggest you ask your gp or consultant to put in a referral to the social services adult care team. You could also contact the social work dept within the hospital who will advise you what support is available. There are are also charities that can assist with shopping befriending etc. I have recently had to find provision to support a family member. The key to getting the support is dont be frightened to ask.
( My relative lives in the Greater Glasgow health board area)
The helpline has counselling & will probably have some good advice for you on where to get support - besides the support of all us on here. 00300 555 2800 Is the number Mon to Fri, 9-5.
I believe its a lengthy proprocess Through the assessment stage so you've time to find support. I'm sure there will be online groups of patients on the transplant list then there is AgeUK to try. Wishing you the very very best. P
Hello bundelino. What lung disease do you have? I am a transplant patient . Transplant patients are required to have a support system to proceed with the transplant. You are right to think it is unrealistic to be able to manage completely alone. Some people have relatively smooth recoveries. For others it is not so and it is impossible to predict the outcome beforehand. My recovery was pretty textbook, but for the fact we are not permitted to drive immediately post transplant. I needed a lot of help to get to my hospital appointments . And there are many of these initially. I found housework very exhausting as well. Due to the strong immunosuppressive medication and high dosages of steroids mentally things can be very challenging especially that first year. There are also side effects, but not everyone gets them.
Having said all this I would go to this appointment with all these questions to discuss with the doctor. Transplant is a wonderful treatment that can extend our lives but it also comes with it's own set of challenges. It is good to find out all you can about the process and the medications you will required to take for life.
I will be entering my fourth year of life with my donor lung. I live a relatively normal life. It has not always been easy and I expect there will be more challenging times ahead. But I am so grateful for my donor and the second chance she has graciously given me. If there is anything you'd like to ask or talk about I am more than happy to be of assistance.
Very best wishes,
Cas 🙋♀️🐕
Hi! What point are you at? Which hospital? I'm asking because I've been under Harefield transplant unit for 10 months and we haven't got close to discussing post transplant yet. After many tests over seven hour days I'm hovering on the periphery of the 'live' list at present. After weighing up the risks/benefits the team are fully supportive of my desire to stay off the list whilst I'm stable. Maybe you could contact your transplant coordinator and arrange a proper discussion re. post tx. It's a shame we no longer have convalescent homes , that would have been ideal for you. Good luck!
yes I'm gong to have my first meeting and a few initial tests at harefield soon. I don't know that I will still be here if it's going to take very long. I already almost died once from a chest infection, I just don't think I will be able to hang on for years in my condition
Harefield are amazing! If it's tests + discussion with coordinator + chat with tx consultant team it could be a long day so take snacks! (There is a café but I worry I'll be called for something the minute I've popped out. ) We do now, we learnt after my first visit. They suggest you write all questions down then you'll have time to ask them. I too was seriously ill (coma, intubated, mechanically ventilated etc, not expected to make it) some years back. The most important thing I think is to keep as fit and well as possible to give yourself a fighting chance of surviving the surgery. The physio called excercise "Training for transplant". That's my mantra now! When is your appointment? My next one in person is July but I have a 'phone app with palliative in May. Good luck! 🙂
Hi when you go to discuss transplant mention to them about your lack of support when you do have transplant also contact the number another member as given you to find out what support you will get and when to contact them before your surgery. Sometimes people suddenly get a phone call saying a lung etc with a match is available, but I’m sure they will explain all that. I met to discuss heart transplant. It’s always best to get your support in place now, it’s never too early to begin to get the ball rolling instead of waiting for it to happen.
Hi bundelino. Your among friends here.we can give u friendship + emotional support. I'm sure if yr in UK,a care package will b negotiated 4u,if needed.ive not had a transplant but someone's recently had a double lung transplant and Caspiana keeps us updated re her journey.also dodgylungrunner( I think that's his name!) Is on transplant list xxx
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