First things first, huge apologies for not getting back to those that left a comment on my last post which was now more than 2 months ago. It's safe to say that a lot has happened since then so hold on to your hats!
After getting over the disappointment of a third transplant call not working out and all the usual conflicting emotions of relief and frustration that go with that, I went back to all my usual routines and exercise regime. As Christmas approached, I also did my best to try and get out there and be as social as possible without taking too many risks from an infection point of view.
All was going well until I got a call from the transplant co-ordinator on 22nd December. I recognised the number straight away and my initial thought was here we go again for round four of a potential transplant. However, it turned out to be the complete opposite. The transplant co-ordinator was calling up to tell me that I had to be temporarily suspended from the transplant list ahead of further investigations after 'changes' to my right lung. The co-ordinator wouldn't be drawn on the nature of these changes or when the CT scan and additional tests would take place. However, it certainly wouldn't be until 2023.
The call was over before it had really started and really hit me hard. My lung disease had presumably progressed significantly to the extent that transplant which I've always viewed as my long term plan may no longer be possible. All the negative thoughts, fears and frustrations that I'd felt when I was first diagnosed started to flood back. Only this time it was even worse as I'm now that bit further down the track. The future that I pictured for myself - swimming without having to worry about a hypoxic episode, getting on a plane to have a foreign holiday and being able to run for more than 5 minutes without being completely breathless - suddenly felt a long, long way away and I most definitely had a bit of a wobble.
Once the initial shock had subsided, I was left a little confused by the news. The X-ray that they had seen the 'changes' on and deemed it necessary to investigate further, was taken the night that I was in for a potential transplant. There had been no indication then that further tests were needed so what had changed in the meantime? Presumably, they had not actually viewed the X-ray in detail on the night but this puzzled me, too. Had the donor lungs have been deemed good enough surely they wouldn't have operated without checking the X-ray?! I also couldn't understand the delay between the X-ray and them getting in contact with me to let me know that further investigations were needed. Three weeks is a long time for any X-ray result but for something like lung transplant where windows of opportunity are limited, it's really not ideal.
I needed answers so I sent the transplant co-ordinators an email expressing some of my concerns. As ever they were super quick to pick up the phone and talk me through as best they could. Whilst they weren't able to answer all my questions, they did allay a lot of my concerns. They assured me that had the donor lungs been suitable, they would have looked at the X-ray on the night prior to starting the operation. They also were quick to point out that the changes did not necessarily mean that my window of opportunity for transplant had closed altogether. A date for for my CT scan, further tests and a meeting with the surgeons swiftly followed. My period of transplant limbo began.
The one plus side of all the pandemonium was that my family and I were able to enjoy Christmas without the constant worry about a transplant call. It also meant that we could all indulge in a few more festive tipples and generally let our hair down a little. However, as the weeks went by and I got ever closer to the assessment on 27th January, I definitely began to get more and more nervous which is not unsurprising, I guess, given how much was at stake.
At the same time, my wife and I pressed on with a round of IVF at the beginning of January. This had always been the plan irrespective of where we were in the transplant process as we've already had three previously unsuccessful rounds and just as with the transplant, time really isn't our friend. In some ways the IVF round was a welcome distraction from thinking about the assessment. It focussed attentions on Lauren rather than me and gave me a role of looking after her, instead, for a change.
However, it came round to bite us in the bum a bit as the embryo transplant ended up being arranged for the same day as my transplant assessment. Sod's law at its finest and yet another hurdle to overcome. Again, the transplant team came up trumps, going the extra mile to ensure that I completed my assessment and had my follow up discussion with the surgeons in good time to for us to be able to get on to the embryo transfer at a hospital in central London. I cannot thank them enough for this, even if it did mean that the day was a bit of a blind panic!
The assessment itself was nothing to write home about. A CT scan, lung function, bloods and a repeat of the 6 minute walk test. However, they didn't pass without incident as I was made to stop as a precaution 4 minutes into the walk test as my oxygen levels had dropped well below 90. Admittedly, I was walking as fast as I could rather than at a general ambling pace but it served as a clear reminder if ever I needed one that the lung disease is now more advanced. In my heart of hearts I already knew that I've had another dip as exercise has become more difficult over the past few months and it's taking me longer to recover afterwards. It certainly didn't bode well for my talk with the transplant surgeons which ended up being far from encouraging...
From a physical perspective (i.e. general health bar the lung disease), they said that I was still more than fit enough to be on the list. In spite of having to stop for a good minute of the 6 minute walk test, I'd actually managed to walk more than 1.5 kilometres which they were very impressed with. They were also very encouraged by the fact that I'm still exercising daily. However, the surgeon was far less optimistic from a surgical perspective. He told me that while the right-lung hadn't shrunk dramatically, it had advanced. Surgery would now be a lot more complicated and carry substantially more risk. If, indeed, he and the rest of the team concurred that it was, on balance, still possible at all.
The news was a potential hammer blow that I had prepared myself for but as ever it was not yet a definitive answer - that would have to wait until they'd considered the CT scan and other tests as a wider MDT the following week. My transplant dream had lived to fight another day but the purgatory had to continue for another week at least.
I didn't really have time to dwell on it all as my wife and I had to get straight in the car and on to the embryo transfer which was a complete success. We're now officially pregnant according to the early pregnancy tests but obviously have a lot more hurdles to get through, starting with our first heart beat scan this coming Friday.
The good news didn't stop there as the transplant co-ordinator called a week after the assessment to say that having reviewed my case, the transplant team were happy and confident that the transplant was still a possibility. It turns out that surgically they just have to approach it slightly differently including the type of lungs that they consider for me. From a risk perspective they were confident that it was not significantly higher than before. I couldn't really have asked for any better than that having been prepared for the worst. A huge result and a huge relief!
I've now been back on the transplant list for two weeks now and life has returned to as 'normal' as you can possibly get when you're awaiting a new set of lungs and a potential new person in to the world. Like I said, it's been a crazy, crazy couple of months and what's craziest is that the most difficult is yet to come. It's felt like a real fight to get back to where I was 2 months ago but I'm back there now and determined to do everything that I can to stay in good shape and be ready for when that call comes!
In the meantime, I've got to prepare myself for an oxygen needs assessment following a referral from the transplant team. Fair enough, I guess, given my performance in the 6 minute walk test. I don't think I need it personally and I'm pretty sure that the referral wouldn't have happened had I not tried to push myself to my limits in the 6 minute walk test.
The transplant team were quick to stress that it would only be ambulatory oxygen that I'd need at this stage should it be deemed necessary and that this would help me to exercise for longer and put less strain on my heart. Regardless, I'll go in to the assessment open minded and ultimately will let the experts decide. No date yet for the assessment which isn't likely to be before April at the earliest according to the referral letter I received. With a bit of luck, I might even have finally had my transplant by then!
Wishing everyone all the very best and hope that you're all looking forward to spring and the return to warmer air which will be a lot easier for all of us. The picture of me enjoying the sunshine at Tennyson Downs on the Isle of Wight last week
Written by
dodgylungrunner
British Lung Foundation
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Hi there… Wow what a rollercoaster of a journey you and your wife have been on, it certainly says a lot about your strength of character. I must admit I had hoped your absence was due to your recovery as I have thought of you many times. Your the same age as my son, and whilst I wasnt suitable for transplant it really does lift my spirits they a young man like you gets his deserved 2nd chance. Huge congratulations on the wonderful baby news, I’m absolutely delighted for you both. My goodness how difficult it’s been for you trying to pick yourself up after each disappointment, but hey you have done just that each time. The ambulatory oxygen has been a godsend for me, really does allow you to do things you literally could not attempt, it will help your lung function so much and keep you in a good place for when the call comes….that transplant is coming for you very soon. I can feel it in my bones!! 🤞🍀X
Hi @Injecter1. It's certainly been a rollercoaster thus far which took another down on Tuesday as I finally succumbed to COVID. Doing fine so far but now off the list again for another month and touch and go whether I'll be negative in time for my wife's scan or my oxygen assessment next week. Honestly, you couldn't make it up! I'm sorry that you didn't get the opportunity of the transplant but glad that the ambulatory oxygen is making a difference. Keep up the good fight!
Good to hear from you as always sassy59 ! Hope you're well? Certainly been peaks and troughs. Back on the way down again currently as I finally officially succumbed to COVID on Tuesday. Doing fine so far but now off the list for the next 28 days as a precaution. Hopefully just a bump in the road before transplant. Love the IOW too - many happy memories from family holidays growing up
Congratulations to you and your wife on your pregnancy. I hope all goes well. You really have had a roller coaster time waiting to see if you were still ok for a transplant. Sounds pretty gruesome. Hopefully that has been sorted now and the right pair of lungs will come along soon. Fingers crossed fo you.🤞🤞🤞 Good luck. xxx
Alberta56 thank you! The pregnancy news has been a great distraction from the transplant stuff. Got a scan on Thursday next week but just as things were picking up I have another challenge - COVID. Doing fine so far but now off the list and touch and go whether I'll be COVID free by the time of the scan. You know me though I love a challenge! Really hope you're well and thanks as ever for all your support.
Oh Andy you must have nerves of steel to stay so upbeat and positive through all of these choppy waters. Congratulations on the pregnancy. It's lovely that you have that to concentrate on and as you are back on track for the transplant, not too long before it is successfully completed. Much love to you and your wife.xx
Don't really know any other way to approach it Hidden . If I didn't, I think I'd go mad! Pregnancy has definitely given me something else to think about other than the wait. However just when we thought we were heading in a good direction again we found another dip on the roller coaster in the form of COVID. Managed to pick it up in time to get myself isolated and not infect my wife but I'm now off the transplant list for 28 days and it's touch and go whether I'll be negative in time for our next baby scan this time next week! Never dull that's for sure!!! Thanks as ever for all your support. Really hope you're well?!
Great to hear from you, good luck for the next few months I can’t tell you how much I admire you. How exciting about the baby news, I have twin 17 year grandchildren conceived via IVF so sort of know how you feel. Such a gift.
Thanks Zero02 ! Certainly going to need all the good luck we can get as there's still a long way to go with the pregnancy and my lung transplant. In the more immediate term I have another hurdle to get over in the form of COVID which I finally succumbed to after 3 years on Tuesday. Doing fine so far but will now be off the transplant list for 28 days and it's touch and go whether I'll be negative in time for my wife's next scan this time next week. IVF is incredible isn't it? We don't have twins coming but it's an amazing process and I'm so happy for you that it's brought you twin grandchildren.
Thanks Zero02 . COVID not been too bad so far and now on Day 6 so hopefully through the worst of it. Hope you're having a lovely weekend whatever you're up to.
wow! I dont know where your strength comes from, quite amazing. I'm so pleased that you're still on the list after all that trauma. I'll be thinking of you and Lauren on Friday 🤞🤞 - I have a darling IVF grandson in France (you get more chances there), he's an absolute joy.
I don't know any other way peege - I think I'd collapse if I didn't always look for the best and also think that a lot of the perseverance/resolve comes through having had to endure a few hardships/challenges already over the years. All still going well on the IVF front and we have another scan this time next week. Touch and go whether I'll be there though as I currently have COVID which is a bit of a set back
Fantastic to hear that you have a grandson via IVF. Always encouraging to hear about other success stories. Really hope you're well and thanks so much for all your support
Certainly wasn't in the plan peege that's for sure but it's not been too rough a ride so far. On Day 6 now so hopefully through the worst of it. Fantastic to hear that your grandson is doing so well and love the fact he's so active. They're fearless when they're young and open to anything aren't they?!
Hi Andy. Firstly many congratulations on the pregnancy. This is excellent news. I am sorry to hear about the turmoil. 😔 It all must be so nerve wracking. I am pleased you are back on the list and truly hope you get your call very soon. The life of transplant recipients has so many ups and downs. It can be so tough but you are doing brilliantly. Keep moving as you are doing. Many good wishes to you. xx 🙋♀️
Thanks so much Caspiana ! I know you understand better than most about the ups and downs. On another down at the moment as I tested positive for COVID on Tuesday despite being careful. It is what it is and I'm feeling ok in myself but as you know it means a further delay for transplant which is a bit frustrating! How are things with you? Everything going well?
Glad to hear you're well Caspiana . COVID is definitely an unwanted visitor and a bit of a setback but I'm hanging in there ok so far and think I'm now through the worst of it. However, I think it'll be a while before I return a negative which is a bit frustrating but can't be helped.
Congratulations on the pregnancy. It will be a positive distraction for you both. If you need the oxygen please accept it. I know it'll feel like a huge negative and a reminder of your health. But it will also help especially on the not so good days.
Have they now indicated that you need smaller lungs than initially assessed for.?
Or is the pluera close to attaching to the chest wall?
As the PPFE increases and pulls the lungs in, all your other internal bits move up. The size of the donor lungs cannot be much more than your damaged lungs ,as putting larger lungs in will rupture your diaphragm!
Nathalie's stomach ended up behind her left breast. Her lungs had shrunk so much she needed childs/teenage lungs.
Hope your able to keep going with some exercise it's so important to keep the muscles around your lungs strong.
Good to hear from you as always Kcn3 ! They didn't go in to detail about what was now on the table in terms of lungs but smaller lungs was certainly the impression that I got and I've emailed the nurses at the transplant centre for clarification. You're completely right about the impact/movement of other organs. My oesophagus is pulled all the way over to the right hand side and I know other things have shifted about. Stomach is where it should be currently though I think.
Doing my best on the exercise front but currently out of action as I'm confined to barracks due to picking up COVID. Done well to avoid it this long but a blow none the less as while my body is dealing with it ok so far, it means that I'm now off the list again for 28 days ;(
Oh my. What a rollercoaster. You should be documenting all of this for your memoires. They need to happen. It's quite the nail biter tale.
Congratulations on the pregnancy. What a day that was. I bet you are both super-excited.
I hope both big journeys end in the most positive, and uneventful ways.
From me, in the middle of my 3-month trip to SE Asia. My view is just a different. The temple is just across the road, and demonstrates the need for a new church roof is the same the world over, whatever the faith.
I hope it will be finished and back to its usual magnificence before we leave at the beginning of April.
Fantastic to hear about your Asia trip MMaud . I went to Thailand, Cambodia and Vietnam back in my early 20s and loved it out there! It's funny you should mention memoirs - as I'm not working I have been writing a bit of a book about my experiences. Doubt it'll be of any interest to many but it's been fun writing it and another distraction. The latest chapter is that I've finally succumbed to COVID which is hugely frustrating as I'm now off the list for the next 28 days. Doing alright so far and determined to get over it and back on track as soon as possible. With any luck I'll be back on the list again around the time you get back from your Asia trip. Enjoy!
Our trip has been extended by, literally, a coupe of days, due to Qatar Airways needing to alter our flight, to give us poor timings, a stopover too short of an hotel, but too long to hang around an airport when already sleep deprived, so we now travel back on the 9th, landing Easter Saturday, so get yourself better!
We love it here. The weather has been wonderful, with wall to wall sunshine and temperatures mid.high 30s, which suit me fine. Air quality (the topic of much local discussion) has been poor this year, but thankfully it isn't impinging on me for now.
Whilst my OH is in the gyme, or playing golf, I'm doing a 10k walk every morning, through a handful of routes, which I both enjoy and o obviously keeps the old pins moving. I love the gardens and general horticulture in these parts, but unfortunately my part of Middle England is way to cool to replicate much, without massive glass houses and equally ginagerous heating bills.
Fingers crossed you get yourself back on the list pronto.
Please do keep going with your book. I have a friend who had had multiple transplants (needed a kidney, but received a larger package, meaning she no longer lives with T1 diabetes as a bonus). She then needed a further kidney due to a medical error in the initial diagnosis of her kidney disease,but she now lives a full and happy life.
I have heard her story in bite sized chunks over the years and with every chapter I admire her more.
It's a big thing to go through a transplant, and those behind you in the queues will want inspiring stories like yours. Get those fingers flexed.
Thanks so much for all your support teddyd . It's been one hell of a rollercoaster so far that's for sure and I haven't even got to transplant yet. The latest challenge is COVID which I've unhelpfully managed to pick up
It's certainly not ideal teddyd but on the upside it hasn't been too bad so far which is a big relief as there was no telling or not whether my immune system would be good with it or not beforehand.
You do amazingly well to keep your sanity and sense of reason in the midst of all that turmoil.Congratulations to you and your wife. I hope the path ahead will be smoother for you xx.
Doing my best CDPO16 but it's certainly challenging at times. Sometimes I feel like I'm being tested and the latest test is COVID which I finally picked up early this week. Doing ok so far but means I'm now off the list for the next 28 days which is a bit of a blow.
Yes Andy, it must be. I believe the rate of infection is quite high again but since the government stopped all notifications people seem to have become oblivious to it. Wishing you a good recovery soon.
Couldn't agree more CDPO16 it's mad how quiet it's gone RE COVID and it's definitely being tracked properly at all. On the upside I'm doing ok with it so far and hopefully through the worst.
WoW! You really have had an awful lot to deal with haven’t you, so pleased to hear you are back on the list & all going well with the pregnancy, a rollercoaster of emotions for you both, I wish you both all the luck in the world for the future, you certainly deserve it, do keep us all posted please, 😊🌹🌷💐
It's certainly been a challenge Loopylorre ! The pregnancy is a nice distraction and a welcome positive to look forward to. Still a long way to go though but hoping that it will all end up ok. Back off the list temporarily as I've picked up COVID which is hugely frustrating but I just have to focus on getting better as soon as I can. Really hope you're well and thanks so much for all your support.
I’m fine usual struggles that you get with COPD, but making sure I keep exercising, well I hope you’re over covid soon & back on the list, look after yourself & your soon to be mumma, wishing you all the very best of health & happiness & a beautiful future with your new baby & new transplant 🥰💐👍🏻🍀
Glad you're hanging in there ok Loopylorre . It's a daily struggle with COPD I know and just keeping going is exhausting at times so good on you especially with the exercise which is 100% the right thing to do.
So glad your back on the transplant 🤞you don't have to wait too long.Congratulations to you and your wife, so lovely that you'll be having a lovely little baby.
It was a huge relief Shirleyj although would you believe that I'm already back off it temporarily as I've picked up COVID Have to be off the list now for the next 28 days as a precaution and in the more immediate term I've got to focus on getting better as soon as possible. Hope all's well with you and thanks so much for all your support.
What a journey Andy, so many up's and down's , you have done well to stay postitive, but the baby news wow, must have blown you away and what a joy to look forward to. You write so well, I followed every step, hang on in there and please keep us updated. Love the photo, you look so well IOM must be good for you x
You just couldn't make it up Izb1 , you really couldn't! The latest dip on the rollercoaster is picking up the dreaded COVID. I had the false alarm back in January last year where I had a positive PCR but no symptoms and no positive lateral flows but this is definitely COVID. Doing fine so far but means that I've got another 28 days off the list no more than a month getting back on it again. Frustrating but hopefully just another bump in the road which won't derail the transplant. Hope all's well with you and thanks as ever for all your support.
Oh my gosh I was reading that through tears! What a roller coaster you've been on. What joy at the end though, back on the list AND a baby on the way. You will definitely need stamina for that, think how much excercise you'll get pushing the pram! X
Oh bless! Karenanne61 it's been a rollercoaster that's for sure and that rollercoaster has a long way to go yet. Being back on the list was great but short lived as sadly I'm back off the list after picking up COVID. Fortunately, it's only temporarily - 28 days - but hugely frustrating none the less. The baby news is brilliant though and is all going well so far
Oh no! It really is huge ups and deep furrows on that list! I hope you are not suffering badly with covid. I was SO lucky that the varient I caught last year was mild. I bet the baby news has kept a smile on your face. May I ask when the baby is expected? I understand if that's too intrusive. 😊
It really is Karenanne61 - the rollercoaster that never stops! The COVID hasn't been too bad so far, thankfully, and I'm now hopefully through the worst of it. Glad that you got a mild strain when you picked it up. Baby due date is mid-October so fair way to go on that too. All very exciting though
I'm so glad the covid hasn't hit too hard. Still nasty though. An autumn baby, how lovely! Autumn is my favourite season and Autumn was top of my list as a girls name for our baby but my husband wasn't keen, and she was a summer baby. 😂 I digress, you'll be surprised how the summer will fly past. Take care.
Thanks Digger0 ! The thought had crossed my mind RE transplant and the baby. I'd be willing to bet it might be on my birthday for good measure as the due date is only a week later!!!
Thanks Thinkhealthy . Sadly I've picked up COVID which is a bit of a spanner in the works. Doing ok so far but it does mean I've had to come off the transplant waiting list for a period as a precaution. Frustrating but determined not to let it keep me down for too long.
It's bonkers watergazer , it really is! Latest challenge/set back is COVID. Managed to avoid it right up til this week but it now means I have to take some time out which is less than ideal.
Thanks Patk1 . Hugely relieved to be still on the transplant list and very excited about the pregnancy. I did recently pick up COVID which is a bit of a blow but I'm hanging in there ok and the symptoms haven't been too bad.
Oh Andy such good news about the baby. Many congratulations to you and your wife. I’m sorry to learn of the turmoil you’re going through. Fingers crossed all goes well for you. Your positivity is amazing. My very best wishes, Diane 😊
Thanks as ever for taking the time to read my update and all your support Diane. I'm hanging in there ok despite all the ups and downs and it makes such a difference to know that everyone is rooting for me. Hope you're well and thanks again for all the support!
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I wonder - Do I need Oxygen.
Confused, oxygen 
PIP when on oxygen 24/7
OXYGEN LITRES INCREASED FROM 8 LITRES TO 10 LITRES
