I signed on the dotted line to add my name to the waiting list for a double lung swap. This was on 30th Sept last year. No one knows how long you may have to wait or even if a suitable donor will ever be found. The tragedy is someone suitable has to die in order for me to get new lungs.
Four weeks after joining the list I was called in to Harefield as they had a possible match. After 7 hours, I was sent home as the donor lungs had failed to pass the transplant clinics strict criteria.
On the evening of 12th November I was called in again. This time the donor lungs were good and in the early hours of Tuesday 13 th, I received a double lung transplant.
What followed was extremely difficult for my wife and family as I spent almost 2 weeks heavily sedated in the ITU unit. However, once that episode was over, I spent 5 weeks in the transplant Hdu ward before finally coming home yesterday, 7 weeks and 4 days since the transplant.
As an Emphysema sufferer, it takes a while to feel the real benefit of new lungs as the shortness of breath is replaced by incredible muscle weakness, exacerbated by so many inactive weeks in bed.
However, my FEV1 reading is 3 times better and I walked for 6 mins non stop with little change in my breathing and oxygen staying at 98%. I am told this should continue to improve for 6 months to come.
Transplant should be treated as a final throw of the dice, but when you reach that time, if you are a suitable candidate, don't hesitate. You have a lifetime of pills afterwards, but the quality of life improvement is worth all the risks. I'm not out of the woods yet, but getting home has been a massive boost and I am hoping for continued improvement and a few years of normal quality life.
I would like to thank a praise the skill of Dr Carby and his transplant team and the care and consideration of all the staff at the wonderful Harefield Hospital Transplant Unit in Hertfordshire
Good luck to all of you with COPD.
Written by
AlBlownout
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Thanks for this. I am currently trying to lose weight so I can be assessed for transplant. I'm very worried about it and I'm trying to do everything possible to put off the inevitable. Your story has made me feel a bit better.
Good luck for everything in the future. Please let us know how you are getting on.
Wonderful story and I wish you a speedy and full recovery.
Lynne xx
Hi AlBlownout, congratulations on receiving your new lungs and thank you for sharing your story, it will be great if you would keep us up to date how you are doing as time passes, such helpful information sharing your personal experience of the double lung transplant.
I am wishing your recovery progresses well and that you will enjoy a wonderful time ahead with new lungs.
Hi Albownout, congratulations to you, it's an horrendous experience to go through but it sounds you made it through the worst now and are well on the road to to be able to enjoy your life once again. You're very brave and your family must be over the moon to see you so improved. As the others have said, it would be great if you could keep us updated, people do ask about transplants and it would be great to hear of a patient's first hand experiences. All the best. Libby
I'm a COPD and Alpha 1 Antitrypsin Deficiency patient. My FEV1 is 10% at the last testing in Nov. '12.... I've been diagnosed since i was 30.
I am using a scooter to get around, i use O2 almost constantly 24/7.... I've been on a waiting list before but was taken off it when i was admitted to Rehab for Drug and Alcohol Addiction as i couldn't stop using them on my own will power.
I'm not very confident about the whole process of recovery around the transplant and also being an Addict... as i'm prone to relapse and in doing so taking my anti-rejection drugs maybe compromised in that case.
I've a Consultant and Physiotherapist although i'm not exercising atm, Dr says 4-5 yrs left with or without the op and my Physio says i could av 10-15 without the op if i can exercise...i'm so confused as to make to do because of my situation.
I've just lost my mum in August to this disease and she was not as bad as me but was more active, so i am wanting to last longer now, live longer over better quality of life.... i would love to see my son have children and i would love to be a Grandad as i missed out on so much of my son's life because of my lifestyle and addiction to drugs...
I'll be glad of anything u can suggest to me in light of ur experiences,
I too am A1AD and because that gives you even spread of Emphysema throughout the lungs transplant is the only possible surgical solution. Persevere at losing weight and stay clean. You need to do exercise and make sure you get regular assesment at your nearest transplant clinic. Transplant will not extend necessarily extend your life expectancy, but will increase your quality of life.
I'm trying to put weight on, at least 2 stone which I've nearly done. My biggest fear is relapsing and not taking my anti rejection drugs, sometime i could maybe walk away from if i didn't have the Op could kill me if i stop taking my medication whilst drinking....I am finding very hard to find people who have gone thru a transplant op and that are in Recovery from Drugs and Alcohol.... The ones i know about didn't make it or have relapsed and not with us any more.... sorry to pester you i feel really selfish asking you questions but you are the first person I've found to talk to.
Sorry, I misread your original message. Putting weight on is just as hard if not harder than losing it. Exercise will help a lot, muscle really is heavier than fat and you'll recover from the op more quickly if you have good muscles. Drinking will be an issue. As you've said, you can't risk missing the you immunosuppressant tablets and a raft of others you have take every day. You can drink, but you have to stay within the government safe guidelines, so it's a couple of pints a day maximum. It is a lifetime commitment so you need to be really sure before you have the op. Your clinic may be able to arrange some physiological assistance for you in advance of making your final decision.
congratulations so pleased that you have got an ongoing new life...a big thank you to all those donors and potential donors in giving a person a new lease in life.
Thank you for your wonderful story! I am delighted to hear of your gift of a second chance , keep on keepin on,love to you and your amazing family, Carol X
Such a lovely item to read, and gives me so much hope. Im in the same predicament, only 2 options open, Lung Reduction, or Lung transplant. Im so glad you came through so well, thanks so much for sharing your story. I do have mixed feelings about a full transplant, though I may not be right for a transplant due to current health, and maybe not being strong enough to undergo a full transplant. it scares me so much to know I can only be fixed by someoone else passing on, exactly how you felt. It does send me to tears just talking about it to my wife, it will be so hard to accept, but to hear from you is such a help. Also to hear that it was so fast is a total help.
Best of luck, and thank you again for sharing your experience
Good luck to you - its lovely to hear good news. I'm sure that your family is looking forward to seeing you improve daily - so wonderful for them as well as you!
Hi, This is just what I needed to hear. I have been on the list at Wythenshawe for 16 months with just one false call. I really feel I am getting desperate even though frightened but reading about you really made me long for it. Just the idea of being able to breathe easily. I go back to pulmonary rehab next month so I am hoping that will help. Please do keep us updated. SueE
may i ask how old you are. I am 72 and in very late stages of emphysema and COPD. I dont know if i cud survive the surgery if they found a match......thank you for posting, i wish you a wonderful 2019 and may it bring you good health and happiness as you continue your life journey.....Cathy
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Thank you for sharing it with us x
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