After having to postpone my previous appointment due to a dubious positive PCR test, I finally had my lung transplant assessment on Monday and Tuesday this week. Having read the booklet that they sent in advance, I had a fair idea of what was involved but still don't think I was fully prepared for the extent of the testing. They really leave no stone unturned and put you through your paces!
Over the course of the two days I had lung function, a blood test, an ECG, a heart echo, ultrasound of my stomach, numerous blood tests, urine samples, sputum samples, the six minute walk test and several conversations to discuss my case and the mechanics of the transplant process.
Overall the assessment went well, I think, with lots of positives to take away. My blood type (A), blood tissue and height all mean that I have a strong chance of finding a suitable pair of lungs relatively quickly should the doctors decide to put me on the waiting list. On the flip side, the complicated nature of my lung disease with the shrinking on the right hand side means that there may be some limitations on what lungs could or couldn't be considered from a surgical perspective.
My six minute walk test was a positive and a negative. Positive in the sense that I managed to walk 675 metres in the six minutes which shows that I'm still doing really well. Negative in the sense that it presents something of a dilemma to both me and the transplant team as its a further indicator that I'm in many ways too well at this stage to be considered for transplant.
My CT scans and lung function paint a very different picture and make a strong case for the need to consider the transplant. Especially when surgically it is already more complicated and will only get riskier the longer we leave it. Another thing to consider is that the younger I am, the more likely I am to respond well and recover after the transplant.
Overall, it's a very difficult call to make and I will be ultimately guided by what they recommend once they've had a chance to meet up as an MDT to discuss my case with all the various test results. I guess they'll be weighing up the risk against the potential benefits of transplant and the recommendation might be slightly more nuanced than a simple case of being eligible or not. It may be that they decide that transplant is the best option but that we're still too early, for example, or that we might need to address a previously unforeseen complication/issue as a result of the tests before I can go on the transplant waiting list.
That underlying issue could be my heart as my heart echo was 'not quite what they were expecting' and is something that they want to investigate further to check that there's nothing untoward going on. They haven't expanded any further than that which is a bit unsettling but hopefully there's nothing to worry about and they're just being thorough. Either way, it's better to identify an issue now and potentially deal with it than it is to find it further down the track when it might be more of a problem.
As a result, I now need to undergo a couple of additional tests on my heart before they can meet as a team to discuss my case and make their recommendation in terms of next steps. The next available date for the MRI scan and heart CT aren't until 1 April which leaves me with six weeks or so to wait in the meantime. Not quite what I was expecting but nothing I can do about it and in the meantime I'll just have to focus on keeping myself busy, staying active and simply enjoying life for a bit.
I was very impressed by the team and the assessment process which was extremely thorough and left feeling very confident that I'm in the best possible hands if I do proceed with a transplant. I found out a lot about what the lung transplant process will be like and had a lot of my questions answered.
If it goes well I could get back to 80 or even 85% lung capacity which is almost double what I have now. I could also live as long as 25 or 30 years. Both are certainly sizeable carrots that make transplant very appealing should it be an option on the table come April.
Thanks so much for all the lovely comments and well wishes on my posts which have certainly given me a boost!
Written by
dodgylungrunner
British Lung Foundation
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Wow Andy, that’s quite a balancing act I feel. I hope everything works out well for you and your heart doesn’t prove to be problematic. Wishing you everything good as always.
Wow… What an ordeal but all so positive. Whatever the outcome I think you must feel that you have been very well assessed and tested. And have confidence in the team. That makes a huge difference. Well done you for keeping yourself as fit as you can.
Lots if love
Kate xxx
Thank you so much Andy for that detailed description of your assessment procedure. It is very interesting. Altogether it sounds very positive. One step forward at a time and slowly all will become clear. Like everybody else, I am thinking about you and wishing you the very best outcome.
Wishing you all the very best with your future tests and treatment. Hope everything goes well for you.
It’s a catch-22 with tx candidates isn’t it - ill enough to qualify for new lungs but well enough for the procedure. But… 85% lung function & another possibly 30yrs (by which time they’ll have thought of something else!) What’s not to like?! So get those cardio tests done & let’s hope you can go on the list soon.
The tragedy is there are too few organs. I wish more people would join the Organ Donor Register, it’s so easy to sign up online
Since 20 May 2020 in the uk everyone is an organ donor unless you opt out. However the family of the deceased still had the final say ! Papworth said when this was bought in in Ireland, it took 2yrs to make any difference, which is sad. The pandemic has sadly affected the amount of organ donors available. Covid has ruined many lives and not just those who had covid😪💔
Oh, really? I knew that was on the cards but didn’t realise it was law yet. But relatives shouldn’t be able to change the dead person’s wishes, in my opinion. It’s their body after all
Things seem to be looking very good for you Andy, I hope you get the result you want. Keep us up to date with what's happening. Have a good night and take care 😊 Bernadette and Jack 🐕 xxxxxx 💙❤️
Well Andy you have had a full MOT and a further investigation of your heart function is worthwhile to make sure you are as fit as you can be. It's a balancing act for sure because on the one hand you are a young man and you have worked hard to keep as fit as possible and they could say you are not unwell enough to warrant a transplant. I really think they shouldn't think that way because if you were really unwell you may not be well enough to have the transplant. It is a dilemma for sure. So carry on regardless and have the other tests required and in the meantime just try and relax and enjoy yourself as much as you can.
Well, now you are well versed in what could and may happen and what it entails. I had two evaluations. I was not ill enough during the first one. And the surgeon said to me at the time " We want hold on to your native lungs for as long as possible. We will not consider transplant until we are sure and it is the last resort". And so I waited another two years and had another evaluation. By then I was ready.
Thanks for the update. That’s a great mot you’ve had and hopefully the heart isn’t at all problematic when they look into it further. Having your talker height is an advantage. I was told it’s easier to place small lungs in larger rib cage that the other way round as they need room to expand. Is it your lung that is shrinking on the right hand side? Did you walk with/without ambulatory oxygen -do you require it? It’s such a dilemma -the being too well not not Ill enough for transplant. Hope if it’s not the right time for the transplant that you’ll be reviewed regularly and your better health is maintained for as long as possible.
I really wish you the best going forward and whatever they decide will be a benefit for you .let's hope its a quick decision and that you get what you need to live a long life even though you have 6weeks to wait x
Wishing you all the very best Andy. It seems a bit silly to have to wait until you get worse before they consider you a candidate, your lungs are in decline but you are fit enough to get over such an enormous operation. Lets hope further tests show that you are ok for the op. A further 25-30 years would be wonderful to look forward to. Look after yourself and carry on doing what you are doing its obviously working x
Well , your team certainly seem to be mega efficient and overall there seem to be so many positives 😃 I’m sure whatever decision is reached will be the absolute best for you at this point in time . The wait , I’m sure, is difficult but you seem to know how best to spend it , keeping active now must surely be beneficial should you be given and take the option of a transplant . There certainly are some very ,very juicy carrots attached to that option . Whatever decision you and the team reach will definitely be the right one , given the work and thought going into it and your brilliant attitude will get you through whatever the future holds 😊 Sending you love and healing thoughts 🙏 xx
Hi Andy. Thank you for very interesting account of the 2 day assessment and what it entailed. A lot to take in but sounds all positive and hopefully the cardiac tests will be in your favour. Keep up the fitness regime and wishing you the best of luck xxx😊
Thankyou for your update. It's given me a bit more of an insight into the whole process. It must be such a tightrope for the MTD to walk when deciding when, or if, a candidate is suitable for the list. Hard for you to have to wait but I admire your attitude. Keep us posted and keep running!
Gosh! Good to hear things are moving again for you.Thank you for the detailed information you have after your recent testing. I see that the testing procedure is very thorough and the complex decisions being made all the way through this process. It’s quite an eye opener for me ! Hoping you get everything you need and the huge potential improvements in lung function is indeed very enticing and a game changer for a good long term improvement in you quality of life. Most exciting news.
Your situation with blood groups and other criteria sound pretty positive. The teams involved sound amazing 🤩 no doubt you are in the very best hands.
Wishing you all the best over the next parts of this complex process and hope you can enjoy a bit of your life whilst waiting for everything to progress through the testing process. Sending you a hug 🤗 and my best wishes 🫁👌
Wishing you the result you want. The tightrope balancing act over when is the “right moment” I can understand but, do they take into account the length of time you might have to wait once you’re on the list until suitable lungs become available? I hope so.
Wishing you all the very best Andy,& sincerely hope all works out really good & well for you, you are very much in our thoughts & prayers..Primrose123..x
I'm sure, that they are doing everything possible, to enable your Transplant to be a successful one. It all seems very positive and you have my best wishes.
Wow.! You’re an inspiration to me and fingers crossed for the transplant. I’d got out of the habit of daily exercise but starting tomorrow I’m on it again and all thanks to you.
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