Hi everyone,
My chest specialist recently told me that the next best course of treatment for me would be a lung transplant. Although it has so many positives the sheer size of that kind of operation is a huge negative in my head.
Has anyone else had to go through this decision?
Regards Joseph
There are many here who have been in your situation. It is very difficult. People will be along soon to tell you about their stories. It will help to hear what they have to say.
All the best
K
Thank You.
Good luck, Joseph, and hope things go well for you, whichever option you end up choosing.
Thank You.
I hope that you get some helpful responses Joseph. Wishing you all the best in coming to your decision. Take care. Pam XXX
Thank You.
hi I was told that over a year ago, but its a long process and im still not sure, I will decide when they decide its time to refer me to a transplant centre which in my case is Newcastle a million miles away lol.
Thank You.
Hi Joseph
Yes there are members on here who are on the active list and members who have had transplant who im sure will reply to you
i was told 3 years ago that i would need transplant and my initial thought was "no way"...My consultant encouraged me to go to the assessments which is what i did and every 6 months i go to Harefield for tests and a check up
Its taken me 3 years to know its the right thing for me and im hoping they will put me on the list when i next go
Thank You.
You are welcome,, Im a member of a group for pre and post transplant patients ,, if it would help i can give you the details or if you have a question im happy to help if i can.
Hi Mandy it would be fantastic if you could send me the details.
Thank you
Joseph
I have asked about transplant but my specialist says that an operation would be fatal kill me in other words why could this be? I didn't think anyone with lung disease could have a transplant
Many lung transplants are performed for people with lung disease and people with cystic fibrosis etc. I don't know your personal circumstances but I'm on the transplant list waiting for one and I have emphysema and bronchiectasis. Have a look on NHS Web site for lung transplant it may give you some information x
I did consider this route but not to on the grounds I was approaching 65 and decided to leave it for the younger sufferers. Also if it fails then it seems to me to be a painful passing
Thank You.
There are so many things to take into account that only you can make the decision; people on here in the past have had transplant, many are being assessed re the possibility/feasibility and I can see no objection to doing this unless, of course, you have decided not to go down this route - then it would be putting yourself through some tests to no advantage. It's a very tough decision to make but, whatever you decide, we'll be here for support if needed.
Thank You.
Hi Joseph
I imagine this is no easy decision to have to take at all , but if you have the opportunity to improve Your quality of life I have often wondered myself if I were given the option. Hopefully you have family and friends to chew this over with love and lots of support. I imagine if your consultant thinks your fit enough for it that's a big tick in the right box. Good Luck and let us know how you get on.
Take Care X
Thank You.
I have been on the active list for a double lung transplant since last July. It took me 2 years to decide to go down this route but it is the right time, don't get me wrong it's terrifying but worth it hopefully xx good luck to you, you will know when the time is right x
Thank You.
I know a person who had a heart lung transplant, his heart went to another person. It was a success. The difficulties are the large amount of anti rejection drugs. There can also be problems with the nerves, that have to be cut. If you want lungs that work, it's a case of taking the rough with the smooth.
Thank you
11 of march 2016 i was tplanted its not that bad dude id do again if needed in a hartbeat im not goin to write loads on stuff you dont want to know but if you ask me ill tell you anything you want and i mean anything just ask what i will say is dont fear it its not that bad
Thank you
Wish I had the chance as I would jump at it. Last month went up to the Rotal Brompton And Harefield Hospital, which is THE hospital for Lung conditions to be told there was nothing that they could do for me. When I brought up the subject of a Lung Transplant I was told, sorry as your over 65 you are to old. No body told me 5/10 yrs ago when I was able to get by on most things and now that I am on Oxygen a lot of the time it's to late. To me Quality of life is the most important, so if you have a chance go for it. Best of luck
Hope you get some useful information on this. I had similar discussion about transplant with consultant 6 months ago and was told that he would start process of listing me so I spent a lot of time researching this. However, when I raised this issue again yesterday following decline in my condition I got impression that there were extremely long waiting times to be seen by transplant centres and chances of being seen any time this year (or next year!) were negligible so it might be worth checking if this is a realistic option before expending too much time thinking about it. Hope it was just a bad day for my consultant and above info is wrong!!
On more positive note, one issue that worried me was survival time but we sold our house to a chap who was 2 years post lung transplant in 2008 and he is still alive and doing extremely well 10 years later.
The Inspire website has lots of stories and experiences from people who have gone through transplants that may be of use though it is with US patients and no idea how UK compares. Here are just a few
inspire.com/groups/living-w...
inspire.com/groups/living-w...
Thank you so much for getting back to me.
Joseph I had a double lung transplant 6 years ago and I will tell you that it was the best decision of my life. The transplant itself was pleasantly easier than I expected. The only discomfort I had was from the drainage tubes, stomach pain and back pain (probably from the bed).
I've had numerous lung infections which sometimes involved a bit of time to overcome.
On the whole I would do it all again without a second thought.
Good luck and be well!
Thank you so much for your kind words.
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