Entering 2022, I'm not disappointed to be waving goodbye to 2021. Covid ruled over us all in the early part of the year and then reared its ugly head again at the end of the year to add further anxiety and stress. However, for someone who up until March was having to shield, in reality it never really went away.
While others began to go back about their ordinary lives I, like many in the at risk category, had to hold back and avoid crowded spaces. I wasn't 'free' like everyone else and had to make difficult decisions which meant I often missed out on doing things with friends and family. By extension my wife and Dad also had to miss out on doing activities that they may otherwise have done. This got me quite down at times and like many I felt a bit abandoned by the government. When they lifted the lockdown restrictions, it felt like they absolved all responsibility for vulnerable groups, leaving it down to us to make all decisions on what to do on our own and without the support of some proper guidelines for the general public that would have made me feel a little bit more comfortable.
Like many I erred heavily on the side of caution, going just once to the cinema, avoiding all live sporting events and deliberately picking pubs with outside spaces for meet ups. I've never truly felt relaxed but I am encouraged by how well the vaccine appears to be holding up against the latest strain. I have my booster - three months to the day since my first vaccine - on Saturday and after that I'll be in as good a position as I can be when it comes to Covid.
I've also had my flu jab and re-started doxycycline to provide me some base level protection against chest infections which have begun to get more prominent since the bronchiectasis that has started occurring in the upper lobes of my right lung as part of my disease progression.
After three chest infections in as many months, I've managed to avoid picking anything up over the Christmas period which is a huge bonus as I enter what is going to be a pivotal and potentially life-changing year in regards to my lung health.
In the aftermath of my CT scans and follow up consultations where it was made clear to me that I need to make a decision sooner rather than later in regards to lung transplant, I await a date for a full lung transplant assessment where I will be put through my paces and ultimately make the final decision on whether I go on the lung transplant list or not.
It's a big call and one that isn't as clear cut as I originally thought when I was first informed that lung transplant as an option was something that I would need to consider now.
The problem is that I am something of an anomaly in that I'm not really unwell enough yet to be normally considered for a transplant. Despite having a lung capacity and oxygen transfer rate of less than 50% I remain hyper functioning so while I can't do things like running or swimming I can still cycle, walk miles and hold down a job. However, if we wait until I am less able to function my window for having a lung transplant may have passed.
This is due to the nature of my lung disease which has seen my right lung shrink dramatically. As a consequence, the chest cavity has also shrunk which means that the right lung will have to be cut to fit the gap. At one stage, my transplant team were considering single lung transplantation as an option whereby they leave the right lung and only replace the left one. That option is no longer viable due to the bronchiectasis in the right lung which would leave me extremely vulnerable post-transplant when I'd be heavily immuno-suppressed. As it stands, the surgeons are confident that they could perform the surgery to replace the right lung but my disease continues to progress meaning that there is no guarantee that that will remain the case another year or 18 months down the line.
As with nearly all aspects of lung disease, there are no certainties and this makes the decision a tricky one to make. If I do nothing, my lungs will get worse and at the current rate of decline I will be around a third lung capacity and oxygen transfer within the next 4 - 5 years when people difficulty require oxygen and have a much more limited quality of life. If I go ahead with the transplant there is the obvious huge risk that it will not be a success or will only be a partial success with the national 5 year survival rate set at the slightly daunting 50%.
I've always been an optimistic person and my gut is telling me that I should take the transplant as it offers me the possibility of a future without lung disease and all the potential benefits and freedoms that I've not been able to enjoy for some time like running, flying, swimming and being able to live care free for a few years at least. However, I need to be sure that this kind of future is, potentially, on the table if I do go ahead otherwise I'm not so sure that it is as worthwhile as I initially thought.
Should I get the all-clear medically that I'm suitable for transplant and I agree to go ahead, I will go on the transplant list immediately and could, in theory, be called up at any time after that should a set of lungs become available which they feel I am the best match for. As a result, I have to be ready with less than 24 hours notice which is quite scary and makes planning ahead almost impossible.
So I'm at something of a crossroads when it comes to my future with a lot of things to sort out entering the new year. Mindful of that, I made the difficult decision to call time on my role at the Asthma UK and British Lung Foundation after four brilliant years just before Christmas so that I can take time to make the right call and prepare myself for the subsequent challenges that lie ahead.
I'm very fortunate to be able to count on the support of amazing family and friends as well as some brilliant people as part of this community on Health Unlocked. Your advice and support have always been amazing and if anyone has any advice or experiences of transplant or knows someone who does, I'd be more than grateful to hear from you!
Happy New Year to you all - here's hoping that 2022 is a healthy one for us all!
Andy xxx
Written by
dodgylungrunner
British Lung Foundation
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Oh Andy, such a lot to consider and no easy decision for you to make. Whichever path you choose I wish you well. Do keep in touch and let us know how you are from time to time.
Thanks CDPO16 . Tough decision no doubt but it's so reassuring to know that I've got everyone's support however things turn out. Really hope you're well and having a good start to 2022.
This is a great place for support. Saw in your reply to sassy that you have an assessment on 24 th January. It's a next step which will add to the information you need in making a decision and I hope all goes well for you as well as being an opportunity to ask any questions you may have at this stage.
I'm not too bad at the moment thanks. Carole xx
I was happy to be rid of 2021 as well!
My advice is to take the transplant if its been offered and best of luck!
Thanks for taking the time to reply Hidden . Transplant is my gut instinct at this stage too but not 100% sure yet. Got the transplant assessment to pass first which is also my opportunity to seek the answers that will make me feel more comfortable about making my decision.
Good to hear from you Andy and good luck with any decision you make. As always I wish you well, you’re an inspiration. Take care and stay as well as you possibly can. Xxx👍💜🤗
Thanks as ever sassy59 for your amazingly kind words - always give me a pep up when I need it! Got my transplant assessment booked in now for 24th January. Nervous as it makes things that bit more real and means that I'm moving ever closer to a life-changing decision. At the same time, I'm glad that things are moving as it's the uncertainty more than anything else that affects me. Hope you're well and having a good start to 2022?
Keeping everything crossed for the 24th Andy. I hope you can talk through any concerns you may have. Wishing you a great year full of positivity. We’re doing well thank you. Take care xxx🤞🏼💖💜
Hi Andy. Your gut feeling tells you to go ahead and I'm sure it will be the right decision for you to take. Wishing you all the very best for your future, we are all here rooting for you. xxx😊
Thanks for the support HollyBoyd . I'm leaning towards transplant no doubt but still a few things that I need to check out and I've got to pass the assessment first. Taking it one step at a time is helping - if you think too far ahead then you go a bit mad! Hope you're well and 2022 is treating you well so far?
Thanks for your reply, Andy, I am doing fine and looking to the spring!! Wishing you all the very best for your assessment on the 24th. Keep us posted xxx😊
I think we are all happy to be rid of 2021 and I hope this year will be better. You have some difficult decisions to make, and I hope that whatever you decide works out for you. Many blessings to you.
Thanks Carnival567 . I agree 2021 was AWFUL and I remain optimistic that 2022 will be better despite saying the same this time last year! Started alright so far though and have my transplant assessment date already in the diary for 24th January. Wishing you all the best and thanks so much for your support.
Thanks Lemon7 . It's been a tricky couple of years for all of us and I keep thinking that we must be due a change of luck. Good or bad, 2022 will be a pivotal year for me personally, no doubt. At least I'll have some clarity regardless of what happens. Hope you're well and thanks so much for all your support.
Only you can decide, Andy, and there’s an awful lot to consider. You are indeed an anomaly by the sound of it. Transplant is no easy option, I hear. I do believe in following my gut instinct, tho. It hasn’t let me down yet.
You’ve got time to think about this from all angles, and from the very well organised thoughts expressed in your post, I’d say you’re halfway there.
I'm big on gut instinct, too, Hidden and my gut is saying go for the transplant. However, I need to figure out all the ins and outs of both options before arriving at my final decision. The transplant assessment in a couple of weeks will give me an opportunity to get all the information I will hopefully need to make a decision then it's a case of making that decision and sticking to it without having any regrets. So glad I'm in a position where I can give up work to focus on this - it would be even harder if I was having to worry about work on top of everything.
Well, that's quite a dilemma you're dealing with! As others have said, you are the only person who can make the decision and I suspect there may be a feeling that you are damned if you do and damned if you don't.
However, the way I would see it is that without the transplant you can predict a certain decline in your quality of life whereas with it, you would have a new set of limitations (strict medication regime etc) but you might enjoy a much better quality of life alongside that.
I don't know which way I would go, but I wish you well whatever you decide.
Hi Moy, completely agree with your assessment on the situation. If I do nothing I know things can only go in one direction whereas the transplant has big potential gains but also comes with big potential losses too and an even sharper decline. Got my transplant assessment in a couple of weeks which should help me balance the risk against the potential gain. I can hopefully make a final decision from there! Thanks so much for your support and all the best for you, too, going forwards. I hope you're well?
Your assessment appointment will probably help you to come closer to a decision. I hope you will be given all the information you need as I understand it must be the hardest decision of your life.
I wish you all the best, whatever decision you come to. Please come back and let us know.
Thanks johnderby . Tough decision ahead, no doubt. Whatever decision I make I'll commit to it and do my best. Ultimately you'll never know whether it was the right call or not as you can never do the other option so no point in dealing in regrets I find.
Thanks Kristicats . The dilemma is that I'm not really unwell enough to need the transplant now. If it weren't for the way my disease has progressed making the surgery more complicated I wouldn't be contemplating it yet. Lots of questions to ask and things to consider. Got my transplant assessment confirmed for the 24th January now so things will hopefully be a lot clearer after that. Whatever decision I make I'm determined to give it my best shot! Hope all's well with you? Thanks so much for your support!
I know you’ll give your all. Ask ask ask keep writing everything down that you think of to ask and get contact with people who have had similar situations . What is the likely outcome if you don’t and how quickly will things happen. What are the actual figures and chances if you do. You are a young man and deserve a long life as active as you can be. I’m sure you will make the right decision when you have all the facts in front of you. What’s wrong with getting yourself on that list anyway as it can take an age for some people. Very best wishes Christi x
Dodgylungsrunner - this was the first of your posts I had read. Boy is there a lot in there!
As someone newly diagnosed with IPF (having watched it steal my father and a cousin), I have pondered quite a lot about the future, what might happen, and what, if any options I might have as time progresses.
I think we all "know" what we think we would do in your shoes, but truth be told, none of us really know. I don't envy you your current conundrum.
Whatever you decide, if you are at peace with it, then it is the right decision. That was an invaluable lesson my father taught me, when we were discussing regrets at one time. No decisions are wrong decisions, provided you have carefully considered information to hand.
Whatever you decide, I wish you the very best of fortune. Life can be so cruel to us, but as sure as can be, we just have to work with what we have.
Haha it's a fair bit to take in MMaud - well done on reading all the way through! Sorry to hear about your own IPF diagnosis. Not surprised in the slightest that you've been thinking a lot about the future already - especially when you have prior experience of what lies ahead.
I completely agree that it has to be my decision and my decision alone. When the time comes there's no room for regrets. If I pass the assessment and I go for transplant then I'll give it my best shot - no time for looking back or feeling sorry for myself!
I hope you're getting the support and care that you need and wish you all the very best going forwards.
To be honest, I feel well cared for by the ILD Team at the hospital. They seem interested in me, even if they're not quite sure how to deal with me. Comfortably walking 20 miles without any impacts doesn't seem to match the usual patient profile.
My GP is a different kettle of fish.
My PF was picked up on a cardiac CT, when I was a research participant, so I knew about it before my GP did. When I called him to discuss next steps - primarily a referral to the respiratory bods, it sounded like he was having a panic attack. I wasn't entirely impressed.
I do understand individuals GPs don't see to many IPF patients, but I was at least hoping for calm. I mean, panic was my job, wasn't it? It felt like I was calming him down!
I'm now working out how I un-nominate him from his current position, in NHS terms of "Nominated GP".
Anyway, I'll keep throwing my best efforts at life, keep taking the tablets (Nintedanib), and give this thing a run for it's money. Life's for living, and I like it.
Fingers crossed for you. I hope you achieve your hoped for outcome.
It’s good to see you 😊 What a lot for you to deal with, and to consider. There are a number of people here who’ve had a lung transplant and I’m sure they can give you advice and practical help but it’s still a huge decision to weigh up. I hope your assessment goes well so you can at least have all the options. We are all here for you 🤗
Thanks as ever HungryHufflepuff ! Lots to consider as you say but there's lots of support and info out there while I'll have the opportunity at the assessment to ask questions. Got a date for that now - 24th January - which is good as it's the waiting around and uncertainty on the future more than anything that unsettles you! Hope you're well and having a good start to 2022?
That's a difficult decision but you will make the right one. My beloved Nanny said we never make a wrong decision. I was very interested in reading that you are an 'anomoly' as I've been told that too, I don't match the 'numbers'. I'm no where near as as active as you (yoga, pilates and seated zumba!) but when I tell (selected) people I'm being considered for a lung tx they say ooh you don't look ill🤣 Anyway, wishing you a healthy, happy 2022.
It's a tough one Karenanne61 no doubt about that! I always knew that I would have to make the call at some point but was hoping it wouldn't be for a few years yet. Glad to hear that you're defying the numbers as well - they don't tell the full story! Yoga and pilates are not to be sniffed at - I don't do either and I'm really, really inflexible! Are you on the transplant list already or on the watch list?
I'm not on the list yet as I'm still undergoing tests. I am seeing my consultant in two weeks so I'll find out what happens next. Let's hope this year brings us some relief. I'm desperate to go to the British Library to see an exhibition they have on but it means getting on a germy train! 😆
Thanks Ergendl , I'm going to need a bit of luck if I do decide to go with the transplant. Got my assessment coming up which will determine whether I can go forwards with the transplant or not and is also an opportunity for me to ask any questions that I might have. Things will be a lot clearer after that and I can then focus on doing the best thing for me whatever the decision might be. Hope you're well and thanks so much for your support as ever.
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