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
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 grief! My own head is spinning!!!