Last Friday I made the decision to join the lung transplant waiting list after months of tests, conversations with the various medical teams and a whole lot of soul searching. Lung transplant was an option that I have thought about from a very early stage after my diagnosis and when the time came I think I was always going to make the decision to list.
As for all the risks, lung transplant is the only option that will potentially cure me of the lung disease and give me a fighting chance of a good quality of life for the long term. If all goes well I could have more than double my lung capacity again, opening up so many doors that have slowly been closing on me as the lung disease has developed over the last 8 or 9 years. I'll be able to run and swim again without worrying so much about my next breath. I'll be rid of the ever present risk of a pneumothorax (four and counting so far) which has prevented me from being able to fly for the last 3 or 4 years. Above all, I'll be able to start looking forward to getting on with life again in the knowledge that I won't have to be constantly adapting to a new normal with diminishing returns. There will be different challenges, of course, but there is the chance that for the first time that I can remember in such a long time I might actually be able to be a bit spontaneous and care free again. That possible future has got to be worth fighting for and I'm going to give it my best shot.
As of 8am this morning I am officially on the list which means that I could now be called up at any time. Part of me is extremely excited as today could, potentially, mark the beginning of the end of my time with lung disease. However, at the same time, the nerves have begun to properly kick in. A lung transplant is about as complicated and serious a procedure as you can ever undergo and mine is made even more complicated by the fact that they have to surgically cut one of the lungs to fit into the shrunken chest cavity on the right hand side. I try not to think too much about the transplant itself as it only adds to the anxiety and that little doubt that I know will naturally creep in at times.
Of course I don't know when the transplant will be. This makes it tough in many ways as you could get that call at any time so you're always going to be slightly on tenterhooks and can't really prepare bar having an overnight bag ready. However, at the same time if I had a time and date I think I'd be just as anxious I think if not more so as I got nearer and nearer to the date. Also, can anyone ever be fully prepared for something like a lung transplant?
I have to put my faith in the transplant team and focus in the meantime on the elements that I can control like eating, drinking and sleeping well. I've already made the decision to give up alcohol and my wife Lauren already has me on a healthy diet. I'm also going to keep doing what I can to stay fit and active as that's so important regardless of what happens with the transplant. Above all, I'm going to try and focus on living life as normally as I can.
There'll be up and down days, I know, but I know this is the right decision for me and I just have to focus on the possible gains that could be possible as a result of a successful transplant as they by far and away strip the cons. I've also got to remind myself that I have lots of things otherwise in my favour - my blood tissue is such that I should have a high chance of compatibility with the majority of donor lungs, I'm relatively young, I'm comparatively fit and healthy despite the lung disease and the surgeon is confident that the additional adjustments in the transplanted right lung will be possible.
So today represents a significant landmark in my own journey with lung disease that I wanted to share with you all. Wishing everyone all the best and have everything crossed for anyone else who is also on the transplant waiting list.
Andy
Written by
dodgylungrunner
British Lung Foundation
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A very inspiring post Andy and I’m pleased you’ve reached that momentous decision. Well done you. Hopefully the wait won’t be too long but who knows. Thinking of you and wishing you better days ahead. Xxx👍❤️💕
Thanks Sassy! Certainly a tricky decision to make but definitely the right one for me. On day 3 of waiting now and it's not too bad so far. As you say, hopefully it won't be too long before I get called up. All feels very real now though and I'd be lying if I said I wasn't a little scared about the transplant process itself! Really hope you're well and thanks as ever for all your support
Thanks Carole! Certainly a tricky decision but the right one for me I think and I'm at peace with it all even if it means that scary and difficult times are ahead in the immediate short term. Really hope you're well and thanks for all your support as ever
Certainly exciting but a little bit scary at the same time. I know it's the right decision for me though. If it goes well then I'll have a new lease of life!
Congratulations Andy I hope you aren't waiting to long. For your transplant. Please keep us updated and I wish you all luck in the world. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻
Thanks Bernadette! It's felt a bit of a journey to get this far and now that I've got there I know that greater challenges are to come but it's what I've got to do if I want to beat this lung disease and have a better quality of life even if it isn't for all that long
Thanks Katinka! It's definitely good news though I'm not going to lie it was weird going on the list and scary to think what lies ahead. However, hopefully it'll all be worth it post-transplant if all goes well. I will, of course, keep you all posted. Thanks so much for all your support as ever!
A very honest account of where you are at. You certainly deserve the opportunity of a long fulfilling life & with new lungs will have that chance.Wishing you all the very best & hoping that a suitable donor comes along soon! 👍🤗
Absolutely! Big roll of the dice but hopefully it'll work out for the best and it's what I wanted to do as I felt it gives me the best shot at a better quality of life free from lung disease.
Thanks Stratos20! I think I always knew that I would get to this point and I agree it's definitely the right decision for me. Hopefully it'll have a good outcome!
Thanks Otto11! The call is a funny one. Part of you is desperate for the phone to ring so the waiting can be over and you can get on with what you hope will be the beginning of the end of the lung disease. However, another part of you doesn't want it to ring as you don't want to face the undoubted tricky times that will go with it. At the end of the day though I'm with you 100% in hoping it'll be sooner rather than later.
Thanks Helenlw7! One of the toughest decisions I've ever had to make. Definitely one of the bravest! Hopefully it'll pay off though and I'll have a new lease of life.
Blimey, that is fast! The bag is packed and ready to go. Got lots of contingencies etc in place but I guess you can never be fully prepared. Really hope you're doing well - how long have you been post transplant?
1st June 2019, so just past my 3 year point. Every thing went well during my op, and i was only 2 days in ICU, and out of hospital after 19 days. Except for some acute rejection a month or so after my TX, things have been great. The word rejection can sound pretty scary, but it just meant a few days back in hospital on IV steroids and tweaking my meds. As it turned out my body wasn't absorbing the meds too well, so the team just adjusted them. Prior to my op I was on 24/7 oxygen and considered to poorly to attend pulmonary rehab, now my morning routine is a 3 mile walk with my dogs, and weather permitting a 10 mile bike ride. Wishing you the very best on your journey.
Sending you huge virtual hugs ((((( ❤️ ))))) and best wishes for the future you want and deserve! It won't be an easy road to travel but I feel sure that with your positive attitude and determination you will have a good outcome.
Best wishes to Lauren too as it won't be an easy time for her either, but you sound like a great team and I'm sure you'll support each other.
I look forward to reading more posts from you as you go forward on your transplant journey.
Awww thanks so much for your lovely supportive message MoyB! It's going to be really tough for Lauren, me and the family going forwards but we're very lucky to have such amazing support behind us. HU family are amazing too! Really hope you're well and having a good week
Good luck! Sounds like your best chance of a decent quality of life. Hope all works out well. Be a patient patient and let the professionals do their work. 🙏
Thanks B0xermad! It's that possibility of being well again that drew me towards the transplant. It's what I'll cling to when the doubt about my decision creeps in and it's what I'll hopefully live up to post transplant!
Ater reading your post Andy it makes me realise just how much this will change your life, its a brave decision but am sure you will handle this with the same determination you have mustered in staying fit and healthy with your health problems. Wishing you all the best x
Thank you Izb1! It's definitely the right thing for me but everyone's different so I know it's not for everyone. If I can have even five years of being able to live more care free when it comes to breathing and being able to go abroad etc then I think it has to be worth it as if I don't do anything then I'll only be even worse than I am now in 5 years.
You have certainly made the right decision Andy as you say to have a little normality in your life if even for those 5 years would be wonderful, we dont always appreciate the freedom we have until it is taken away. I hope you dont have to wait too long and pray that you will have that long awaited holiday abroad. Irene x
Thanks watergazer! Positive at the moment but I know there'll be days where I'll get the wobbles. Really lucky to have such a supportive crew behind me on here to help keep me going!
Hi dodge. You have a great attitude. It's good that you have thought about all the pros and cons and have made the right decision for you. Everything in life is a series of decisions. You are doing all the right things to maintain as good health as you possibly can. The only thing now is to maintain your positivity because that is your greatest strength. Good luck and I hope you don't have too long to wait.
Thanks Biofreak! The decision was certainly not an easy one and was a long time in the making. At the end of the day, transplant won out quite significantly it was just the fear of putting myself on that list, I think, that was holding me back. Doing everything I can now to focus on what I can control pre-transplant. Everything else I leave in the hands of the docs who are brilliant. Thanks so much for your support - it means a lot.
I remember reading your posts months ago when you were still weighing up your options and you’ve obviously done a very thorough job on that score ! Now you’ve reached that decision and been put on the list you’re only job is to think positive , which you obviously are . I’m so pleased for you and I hope it won’t be too long before you get the surgery and begin your new life 😃 x
Thanks Thepainterswife! It's already been one hell of a journey to get to this point and it's only really starting in earnest now. Determined to give this my best shot whenever the transplant comes and hoping it'll give me a new lease of life.
Thanks garshe! I'm hoping my youth will help me recover quickly but I guess there are never any guarantees with these things. Really hope you're well and thanks so much for all your support.
Congratulations on your decision. No one can know how it will turn out, but it is well worth the risk.
I too hesitated on making a decision. Finally the decision was almost made for me. With multiple illnesses hastening my decline ( I have the genetic Alpha 1 AntiTrypsin Deficiency
Gene) I ended up on oxygen 24/7 at 4 litres, and with a severe cough bringing up lots of ugly looking material. Finally I was as low as 12% of normal when it came to my Fev 1.
Mine was a Double Lung, and my recovery was fraught with many issues highlighted by a stroke. I didn't have your youth or fitness going for me. I was 661/2 and my muscles had atrophied significantly due to my reduced abilities.
Now 19 months later -- I am better than I ever could have imagined. I'm walking distances, out and about (very carefully always double masked), and enjoying life again. In my case it was well worth it.
Goodness me I can't believe how low you got on your FEV1 - as you say the decision was taken out of your hands really wasn't it and a complete no brainer!
Sounds like the process was incredibly draining and tough for you but I'm delighted that 19 months on you are better than you can ever have imagined. That's what I'm doing this for, too, and it's experiences like yours that give me hope and reassure me that I'm doing the right thing so thanks so much for sharing!
Keep thinking “ just what it is to breathe again, go on holiday, imagine that beach that awaits your first destination. . You look young. Good luck to you and your amazing wife. As she looks after you best she can. 🍀🍀
Wherever you want The choice will be yours , I wish you the very best, I’m scared to get valves put in my lungs. I think it’s a new procedure available if Emphazema 🍀
Thanks Rattle! Going to need all the luck I can get going forwards but feel so much better for making my decision which I know was the right thing for me.
Wow I applaud your bravery in making this decision. It must be SO hard. I paid my first visit to the tx clinic at Harefield yesterday. What hospital are you under? I wish you joy and hope the next stage can begin very soon.
Thanks Karenanne61! It certainly wasn't an easy decision to make but definitely the right one for me. I'm also at the Harefield! Are you on the preliminary waiting list where they monitor you every year? That's what I'd been doing the last few years.
Fancy us both being there! Mind you there are only six(?) tx centres. Yesterday was my first visit so my head is still whirling. I'm still in a holding pattern and will have another appointment in about four months.
Hi Andy. Thank you for all your thoughts and congratulations on your decision. Wishing you all the very best for the road ahead, we will be thinking of you xxx ❤️
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