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Anyone on here waiting for a lung transplant.

11 years ago•9 Replies

Hi my last buddie on here had a transplant 5 weeks ago and seems to be doing well. I am still waiting patiently so it would be interesting to hear from anyone in the same position. Sue E

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seyre

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9 Replies

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billy1115311 years ago

i would like one

how do you get on the waiting list

MarieW-F11 years ago

I'm not on the list yet but expect to be assessed early next year. Billy11153 - speak to your consultant.

seyre• in reply toMarieW-F11 years ago

Good luck.

mallygillgundogs11 years ago

Hello Sue, I'm Rob, I've just finished jumping through all the hoops (tests scans etc) and am waiting to see if I will be accepted as an active candidate.

mattcass11 years ago

In June this year i was put on hold for a double Lung T/P after all the tests were carried out, I will be reviewed in December where again I will be put on hold again, mind you there has been a lot of times when you wonder should one try and get it over with if you had any say in it, If it was just my Lungs i would agree that would be the last resort, But having RA as well that different all together nobody knows when and where it goes the next attack on my Lungs would put my lungs outwith an op. Dall05 (Tony) is also on the transplant list how long for now I forget, but again due to his amazing efforts exercise wise there is a possibility he might get taken off. Good Luck Mattcass

seyre• in reply tomattcass11 years ago

That would be a wonderful position to be in, unfortunately I don't think there is any chance now of me improving.

Baldie11 years ago

Hello. I was on the list for a double transplant for some two and a half years without a call. My IPF has progressed to the point that a transplant is no longer a viable option and was taken off the list last year.

I don't want to be the voice of doom but being on the list is not a quick fix it is dependent on so many things. The list is just that a list you don't move up or anything like that but wait for some poor unfortunate of the same blood group tissue type and build to pass on.

The only advise I can give is; if you are on the list carry on with your life as best you can and don't dwell on the list. At first I sat around willing the phone to ring and being terrified in case it did. But after a while I learned to just carry on as usual and go for my six monthly check ups.

I was going to the Harefield Hospital and I can't praise them enough they were, and are, quite magnificent.

nixy11 years ago

seyre, my friend had a transplant two years ago, she was only given one lung as the other one was not suitable. She was very ill before the op and had been on oxygen for quite some time. The change in her is dramatic, she is well and happy and working part time again she was only 50 when she had her opp. She will have to take a lot of medication for the rest of her life.to stop rejection. but thats a small price to pay for a longer life.

seyre• in reply tonixy11 years ago

Thank you. It is always encouraging to hear news like this. Sue E

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