Apologies for yet another interminably long delay since my last update. As ever, a lot to fill you all in on and not really sure where to start...
At the tail end of February I was due for my latest outpatient transplant clinic. That clinic got cancelled due to staff shortages but was rearranged for the following week. Nothing out of the ordinary at this point but days later I got a call from one of the transplant co-ordinators to say that there had been changes in the surgical team which meant that my case was back under review. My clinic was cancelled and I was told that I'd be suspended from the transplant list while they discussed my case in more detail and decided what additional tests might be necessary.
Safe to say that this was not the news that I was expecting and started to make me feel really, really uneasy and unsure about what the hell was going on. A video call with one of the surgical team followed and she explained that they had had a couple of the surgical team retire. Whilst the remaining team are all great surgeons, they said that they had less experience and would need to discuss how they might go about the surgery in my case given its complexity. To her credit she was very candid and made it clear that there was a possibility that the transplant might not be viable with the expertise that they have and should that be the case they would offer me round to other transplant centres to see if any of them would be able to do the surgery should the right set of lungs arrive. However, it was made clear that my hospital are normally the ones that accept the more complicated surgeries so I shouldn't get my hopes up too high if we ended up in that situation.
A bleak picture to say the least with an uneasy wait for them to meet as an MDT and effectively decide my fate in regards to transplant. Fortunately, a follow up date for me to have all the various tests and speak to one of the consultants was scheduled a week or so later so I didn't have to wait too long. However, I set off in trepidation in the belief that the tests and subsequent discussion were make or break about whether transplant - which I'd pinned all my hopes on and put my life on hold for for the best part of three years - would still be on the table.
What transpired completely blindsided Lauren and I. The consultant said that transplant potentially remained a possibility however they wanted me to remain off the active transplant list. He said that whilst my disease was progressing, it wasn't progressing at the rate at which they had anticipated when they originally decided to put me on the list. As I am also still enjoying a (relatively) ok quality of life, it was his opinion that the risks attached with transplant currently outweighed the benefits so I should remain off the list until that situation changes. A huge departure from where we'd been and what I was expecting from the meeting which really caught me off guard.
I left the meeting so confused and over the next couple of days struggled to get my head around how my case was serious enough more than two and a half years ago to be considered necessary for me to be a priority case on the transplant list (and called up for a potential transplant three times) only to now be off the list altogether albeit still on the watch and wait list. My lungs have only got worse in that time and they will only get worse the longer that we leave them so how could de-escalating things improve the situation? I couldn't help wondering whether I'd still be on the list had the surgeon(s) not retired prompting a review of my case. Above all, I was very nervous about the possibility of the lungs deteriorating to the extent that transplant is no longer viable while I'm off the list. I had pinned all my hopes on transplant and sacrificed so much over the last two and a half years to be ready for the transplant only for it to no longer be on the table at all (in the short term at least).
In the end, I decided to pick up the phone and call the transplant co-ordinator who helped me see things a lot more clearly. She totally got where I was coming from and immediately allayed some of my immediate fears by organising for me to have three monthly check-ups to monitor my lungs. I'll now be being monitored more frequently than before and if things do develop they can act quickly and get me back on that transplant list. She also helped me understand the risk/benefit element and why staying off the list at this stage is far better than remaining on it and pushing for transplant as soon as possible. The reality is that I am currently too well or at least enjoying too good a quality of life to push for transplant now and the risks unquestionably do outweigh the pros. 50% of transplant recipients don't live beyond five years - a detail that I'd understandably blocked out when I was told that I had to have the transplant. Had I had the transplant when I first got a call up then, in theory, I could already be half way through my new lung life or possibly even dead. That really hit home. It now makes total sense to me that provided we can get on the list and find a suitable set of lungs while surgery is still possible, it is an absolute no brainer to put it off for as long as possible while my quality of life remains stable.
It does, of course, beg the question why I was put on the transplant list in the first place. However, hindsight is a wonderful thing. My disease is very rare - they've never had a case at my hospital - and they didn't know that my rate of progression wouldn't be faster. All they had to go off was where my lungs were (not good at all) and the fact that if it progressed like similar diseases my window wouldn't be all that long. I totally get that and whilst it's frustrating that I've had my life on hold for the last couple of years I have to now pivot to take this new opportunity to enjoy doing things while I can before going back on that transplant list.
The roller coaster continues but I've temporarily left the theme park. Luckily I still have a return ticket to get back on that roller coaster further down the line.
Thanks so much for all the support as ever and apologies for not getting round to responding to any of all the lovely responses to my previous post. Cassie and Lauren are both well and we've just booked our first family holiday abroad in more than 3 years - another perk of being off the list!
Written by
dodgylungrunner
British Lung Foundation
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Crikey, I am shocked your still sane. Many people would be doing their nut by now. I didn't know the outcome of a lung transplant life wise I mean. I can see where they are coming from but they could have explained that to you then and there and not for you to find out yourself 🙄 nothings ever easy and straightforward is it. I wish you a happy holiday and all the best luck in the world chook. 😉
It’s good to read a catch up from you. You have been on a complete roller coaster, although the doctors do seem to know what they’re doing and what they are doing is in your best interest.
Enjoy your holiday and make new memories every day.
You are an absolute inspiration with the way in which you deal with so much with such level headedness ( if that's a word). I hope you have the best holiday ever.
Well I'm exhausted from the gamut of emotions on reading your news, you must have been too. How awful for you both to have to endure the shock, the waits for reviews & everything in between before the final outcome. The fact that you're off the list plus still have the door open further into the future if your lungs deteriorate do give you some freedom and mind-space to enjoy your family life. (My last emotion on reading, relief!)In a way its sort of brilliant that you can now live without anxiety of the phone call.
Stay as well as can be, enjoy your holiday, the coming spring and Cassie's first steps in the garden 🤍💙💚💛🧡❤. Lots of love from Gloucestershire
I am in complete awe of how you're coping with this rollercoaster ride. A reminder, if one were needed, to seize every day and make the absolute most of it xx
I'm sorry to hear about what you've been going through. No doubt this is quite a confusing and nerve-racking time for you and your loved ones.
You're absolutely right about the lung transplant risk / reward. Unfortunately, lungs are probably the most delicate of organs, and the 5 year survival rate of lung transplant recipients isn't as high as one would hope. It's worth noting, however, that many recipients are towards the older end of the spectrum, so that may negatively influence the survival rates. Also, I believe that even the specific disease that caused you to need the transplant can have an effect on outcomes.
It would seem that a lung transplant is a delicate act of timing. If your disease isn't progressing as quickly as they thought, they'll likely want to put off the transplant for as long as possible before it's truly necessary. I once heard a lung transplant described as a "life-extending" treatment as opposed to a cure.
Don't let yourself get downhearted by the latest development. This absolutely doesn't mean that you're not going to get a transplant when the time is right. It just means that that time isn't now.
Good luck for thr future, and enjoy your no doubt well-deserved holiday.
Hello Andy. Everyone else has already expressed what I’m thinking, so I’d just like to say that, having seen the pic earlier, your little Cassie is one of the most beautiful babies I’ve ever seen 🥰
I read you post with interest. I wrote a long post a few times, updating my woes with cancer. You seem to have a sensible MDT working for you.
I was diagnosed with bladder cancer in 2021 - They said it was none muscle invasive and superficial. I had a course of Immunotherapy inviting my body to fight of the cancer. I was happy with that, specialist said I was to have another course, then my world went upside down. I went for routine appointment with specialist after there checks with biopsies.
MDT had decided I was to have full bladder/prostate and lymph node removal. That was a bombshell to say the least - I said I would think about it but, I am not in good health , a 6 hour operation I think would have seen me off.
The conceded and said I could have another course of BCG, I was chuffed - I went with my wife to have the infusion and then a a real downer, they looked at us and my nurse said could we go into office as a doctor waned a word with myself and Anne - BCG no longer, I was told I had a growth in my lung and could not have the BCG - I was gutted,
As it turned out I had a nodule 6mm and the growth was more scaring.
So BCG was back on.
The op for biopsies was a joke cancelled, and then I got covid, a new date and the surgeon got covid. - I eventually got my procedure and my cancer was high grade - I was given one more chance with BCG and shock, my cancer had gone low grade, So that meant three checks a year and talk ended about bladder removal. I had made my mind up, risks outweighed any gain, My cancer nurse agreed.
You said "it begged the question why you was down for transplant in first case" and you realised you could not have survived,
Your MDT I think got it right, wait and see your quality of life was fair. Reason I wrote this, I have been on the same roller-coaster and had I accepted a bladder removal 2 years ago, I might not have been here to write this post.
Crikey! You've been put through the ringer but at end of it,if u can rejoin life without the anxious wait for a call,its gd for you all,having baby Cassie.fab that Yr up to hols abroad - I'll b great!On the flip side - its a poor do that 2surgeons have left without other drs being trained up to take over!
I’m guessing there’s a feeling of relief about not having to constantly put your life on hold waiting for that call. Hopefully in the meantime more experienced surgeons might join your team or the ones that are there will gain in experience, so when the time comes you will be in good hands. Wishing you all the best and I hope you have a lovely holiday.
Hi its really good to hear from you and a lot of information to process .I hope you thoroughly enjoy your holiday and you keep being monitored by the hospital. What a shock to know the last 3 yrs have been waiting for the new lungs and a call for transplantation only to go through emotional roller coaster of not knowing what the next step is .Enjoy every day as it comes and best wishes to you. ⛱️
Sorry to hear you have under gone so much messing about. I was first recommended for transplant back in 2014, had my meeting with the transplant consultant in March 2015. At the time it was explained to me that I should hold out longer, as I was still having a good quality of life, and given the same talk that you mention. Fast forward, to 2019, refered back to Wythenshawe and received my donor lungs in June 2019. Now getting close to my 5 year anniversary, keep your hopes up, the transplant teams know what they are doing. Best wishes.
Well Andy when reading your post I felt really sad but when you explained it properly I can see there are good things to be had here. Get out there and enjoy that holiday and keep positive, breathe a sigh of relief for the moment knowing the door is still ajar . Who knows what the future holds lets just enjoy today and bask in the smile on your little ones face x
Oh wow, what a ride you have been on. When your transplant team explained, it makes sense. Enjoy your lovely little family and your holiday abroad, you deserve it. Take care and keep us updated. X Shirley
Hi Andy. Well good grief. What a turn of events. 🙁 I know the ups and downs of waiting for the right lung(s) to come along but I cannot imagine hyping yourself up for this huge event in your life only to be told you are not on the active list at the moment . I would be gobsmacked myself.
The one thing I will say is when I went for my first evaluation I was deemed not quite ready. The surgeon I had at the time gave me this advice, "Hold on to your native lungs as long as possible. Transplant is a treatment and not a cure. There is no way of knowing how things will go post transplant. It is not an easy road and not everyone reaps the full benefits of it". I must admit I was disappointed at the time but after I started reading people's experiences I understood what he meant. From there I waited another two years before they thought I was ready for another evaluation. I had declined a lot and the prognosis was less than two years. I was listed then. I waited another two years for a match. So in total from the first evaluation to transplant it was a a long four year wait. But believe it or not that time spent waiting was a bonus in itself.
Seeing your team on a more regular basis is definitely the way to go. Your old team may have retired , but nowadays so many new advances have been made in the transplant world. I am certain other hospitals may also have ideas and information about advances in medicine and transplant that may ultimately benefit you.
Detours aren't always bad, often they can be more scenic than the regular paths. Live your best life Andy. I am thinking of you and your lovely family.
Cas xx 🙋♀️ 🐕
Chom and I admiring the Sakura which are now in full bloom 🌸.
I’m so pleased the transplant coordinator has helped you put this in perspective. It’s easy to be suspicious of reasons for delaying within the nhs at the moment but I think with anything lungs kidneys, knees or hips the general consensus is to prolong the original so that the replacement doesn’t need replacing. Enjoy your holiday.
Hi Andy, Rollercoster is the right word! But the way you deal with all that's thrown at you is amazing - your family must be so proud of you. So glad you'll will be free to go on your holiday. ❤️😊xxx
Hi Andy. Reading your post has made me re-live some of the emotions I experienced when my husband was on the transplant list. His condition at the time was very precarious and his condition very advanced. He was totally reliant on oxygen 24/7 and our fear was that he would be removed from the list because he wasn't strong enough to survive the operation. He was 64 at the time so much older than you. However, he got his double lung transplant miraculously I thought at the time. The 5 year survival rate is very real. Whilst the transplant was a success, the dangers of infection became the next hurdle. Understandably, the body, after transplant, is vulnerable to infection and in spite of our very best efforts it was only a matter of months before the first one hit, followed by 2 more. His transplant was in June 2021 and by January 2022 the lungs began to reject. All sorts of treatments took place to save the lungs and his life but to no avail and he passed away in February 2023 , less than 2 years since his transplant. So, all in all, I think your doctors have made the right decision for you and your family. Grasp your time to make memories for your loved ones and enjoy every minute you can while you can. I would never try to dissuade anyone from having a transplant because for most people in that situation it's their only lifeline. You are not there yet and I hope you won't be for a long time. Myself and my daughters are still recovering from the trauma of the last 3 years because witnessing such a treasured person suffer is beyond description. He fought for life right to the very end. You have a supportive family and they are there for you every step of the way. So grasp your life with 2 hands and enjoy it now with your dear family. Tomorrow is another day. All the best Andy.
What a roller coaster you have been on! Good call to get in touch with the co-ordinator to explain it all properly to you and talk through the options.
Have a great holiday and enjoy yourselves, you deserve it.
my god what a time you have had, i hope you can relax a bit now and enjoy your long awaited holiday with your family. Wishing you all the best, Sally x
Wow what an awful lot has happened to you all, I can imagine how you were feeling initially being told you’re off the list, what a rollercoaster indeed, but thankfully all explained to you properly & a better understanding to live with for the moment, so pleased to hear you have a holiday booked, enjoy making memories with your family on that, also a lady on here called Caspiana has had a lung transplant should you want any help on understanding after how things are, she’s doing really well & a really lovely lady, enjoy your holiday & look forward to hearing your updates, take care ☺️xx
hi Andy. What a ride you’re on. It’s seems there are lots of positives to the new decision You get to go away. Enjoy time with Cassie and Lauren. Keep your own lungs for as long as possible (if they’re fit) seems to be a good thing too. You’ve had some excellent insight from Cas and simplesprout Take care. Waiting to hear how things progress Have a good relaxing holiday xx
oh wow what a lot to deal with and accept. It’s crazy how someone’s retirement can have such an effect on other people’s lives. Thankfully there appear to be several positives to come out of all this. Wishing you a happy holiday 😊
I’ve been thinking about you recently and wondering how you were doing. Thank you for the update. You’re doing the right thing. I wish you all the luck in the world. Best wishes Diane 😊
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