Last week I got confirmation that my transplant assessment has been booked for 24th January. Looking through all the paperwork it's clear that they're going to leave no stone unturned in ensuring that I'm otherwise fit and healthy to be put on the transplant list (should I decide to go ahead of course)!
Ahead of the assessment day I have to keep Covid free, obviously, and provide a negative PCR within 24 hours of the appointment. Going to be difficult sorting one out but I'll find a way. In the meantime, I'm in effective self-imposed isolation to give myself the best possible chance of remaining Covid free.
Again, this puts a big strain on my Dad and wife, too, given that they live with me. My wife had booked tickets to go and watch the new Moulin Rouge musical with her Mum months ago as a Christmas present. I don't want to stand in her way but obviously that's extremely risky so we've decided that she will go and stay with her parents after the show until after my transplant assessment.
The Covid situation also means that I can't have any family with me at the assessment itself which is a real shame as part of the assessment is an opportunity for you and your loved ones to ask questions and seek assurances/answers that will help you make what is a huge decision. I'm sure there are ways that we'll be able to connect with them remotely and I should be thankful that the assessment hasn't been delayed as has been the case with so many appointments for so many people.
I've also been given a hefty information booklet ahead of the assessment which is certainly not light reading but it's certainly given me some food for thought and helped me formulate some of the questions and themes that I want to ask the treatment team.
The assessment day (days really as it involves an overnight stay) will be on me before I know it and in some ways its exciting and something that I'm looking forward to as I'll be that one step closer towards making a decision. At the same time it's all a bit nerve racking as things are soon not going to be hypotheticals but realities that I'm going to have to face head on.
Overwhelmed by all the lovely messages and support after my last post which has definitely helped keep me going. Gping to take it one step at a time, starting with getting to the assessment day with a clean bill of health but long-term I'm determined to give whatever decision I take my best shot.
Cheers,
Andy
Written by
dodgylungrunner
British Lung Foundation
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Thanks as ever for all your support sassy59 . Sadly we had to rearrange the assessment to the 14th February for reasons I'll go in to with a quick update blog. Not too long extra to wait though.
I wish you all the luck in the world Andy, I'm sure everything will be fine. . Will be thinking of you ,please let us know how things do Have a lovely evening and take care 😊 Bernadette and Jack 🐕 xxxxxx
Thanks Damon1864 . I'll keep you posted on how I get on. Unfortunately the assessment has been moved to the 14th February which is a bit frustrating but at least it's not too long extra to wait. I'll keep you posted on how everything goes!
Good luck. I had my assessment in May 2020. There were no problems, each procedure was well explained and all painless. They do need to ensure that you can cope with a huge operation and that there are no under lying health conditions. It was such a relief to get it all done and get listed. Good Luck.
mary1956 thanks so much for sharing your own experiences. Always good to hear from someone that's been through what you're about to go through. I'm not too worried about the assessment itself and I'm already well prepared for the fact that they'll hit me with all the worst case scenarios and possible complications. However, it's still going to be a difficult decision. Did you find it hard deciding to go on the list? Really hope you're doing ok and the wait isn't proving too tough. Can't imagine what that's like yet or how to be during that time. Do they give you advice on how to cope and what you can do during the wait?
Hi, No I had no problem deciding, as my condition was suddenly deteriorating rapidly. My assessment was delayed because of the first Covid wave, then the 2nd wave meant all transplants were stopped because the ICU beds were needed for Covid patients. That helped in a weird way as it made me realise how much I wanted the transplant. I was booked for Birmingham but their suspension kept getting extended and after 4 months they referred me to Harefield, who I am staying with.
The worst has been 2 dry runs, where lungs were found and then found to be unsuitable.
My oxygen needs are increasing so I do hope to get the call soon.
Re coping strategies, that is a hard one and I fluctuate between thinking the call will never come to that it will any day.
Good Luck.
I’m thinking about you Andy. I do hope that the assessment goes well and helps you to make your very big decision.x
Thanks Hidden . Sadly the assessment has been postponed until February 14th which is frustrating but not too long to wait I guess. It's going to be a really tough decision and I have to say that I'm certainly not any clearer at this stage on what I'll do. Hope you're well and thanks again for taking the time to leave a message.
Keep safe and I really hope the assessment goes well! It sounds a lot to deal with on your own and I’m sorry you can’t take someone with you! I hope it’s a positive appointment that helps you figure what to do!
Thanks madonbrew . Assessment delayed until 14th February which prolongs the wait a little bit but not too long in the grand scheme of things. It's a real shame that I can't have anyone with me when it does finally come round but the team have said that I'll be able to Facetime in family members so that they can hear the conversations and ask their own questions. Hope you're well and having a good week so far?
I appreciate it's a bit different, but a friend of mine's elderly father, with early Alzheimer's is having treatment for leukaemia. When he attends clinic her mother attends with him, but she "joins" on Zoom, as she is one of his attorneys (as in LPA). Hopefully, your wife might be able to be similarly accommodated?
I hope you know you'll have plenty of supporters on the day.
Hi MMaud good to hear from you as always! Thanks so much for your message. Unfortunately the assessment has been delayed but I'll hold on to that luck that you're sending for when the assessment does take place on the 14th February. Thanks, too, for the heads up about Zoom. I spoke to the transplant team about this and they said that we could look to do similar.
Hi Thomac , thanks so much for your message and apologies for the delay in getting back to you. The Harefield are looking after the transplant side of things and have been fantastic so far.
Thanks B0xermad . Not sure if I'm going to go for the transplant yet or not but hoping I'll be in a position where I've made up my mind after the transplant assessment which is now going to take place on 14th February.
Hi Andy, I was a bit taken aback seeing the RED CAPITAL LETTERS on the A4 sized information booklet. They don't mess about do they! Very best wishes in the upcoming weeks and months. You seemed to have got your head screwed right!🌿🌱👍
Haha Greenthorn they definitely don't! The book doesn't pack any punches either but I don't mind that as they have to lay everything out there for something as significant as a lung transplant I guess. Would have liked to have had a few more positive examples and the benefits aren't as apparent so I'll certainly be asking for more of that side of things when I go.
Thanks as ever for all your support Ergendl . Sadly the assessment has had to be rescheduled but I don't have too long to wait - new date is 14th February. Hope you're well and having a good week so far?
Big virtual ((((hugs)))). My week has been pressurised but going OK. Got the latest book to the printer's yesterday morning. Now all the paperwork registering it.
Good luck to you Andy. Stay focused on the prize. You have certainly made good plans to keep yourself safe. Try and take things in your stride during your assessment and you will be fine.
Thanks Biofreak . Doing everything I can to put myself in the best position to make the right decision in the first instance and then to best respond to the transplant if that's what I end up doing. The assessment has had to be moved which is a real shame but the new assessment date is on 14th February so not too long to wait.
Thanks johnderby for all your support as ever. Unfortunately my transplant assessment has been moved to 14th February which is a bit of a shame but not too long to wait in the grand scheme of things I guess. I'll keep you posted
It’s hard to get the balance right when we live with others who want their life back while we are waiting for some hospital app. Good luck with your assessment. I was told Oct 21 that they plan to see me Jan 22 I’ve not heard anything yet… I’m hoping I’ve a bit more time to lose the Christmas weight gain 😁every cloud has a silver lining.
Completely agree with you on this BreatheasyBe getting the balance right is so tough especially when you have Covid hanging around ready to scupper things given half the opportunity! Really sorry to hear that your assessment date hasn't been sorted yet. I had to push for mine which I'm sure that you've been doing. Hope it arrives soon and behind you every step of the way on getting fitter - I'm trying to do the same!
I had a transplant assessment back in August and, like you, was unable to have anyone with me or any visitors. However, the consultation with the surgeon took place after the assessment and after the multi-disciplinary team meeting, where they make their conclusions and recommendations, and my husband was allowed to come with me then. I've also has a subsequent meeting with my consultant and again my husband was allowed to come. Best of luck. It is a very hard decision to take - one I'm still mulling over as the post-transplant problems can be significant and the 50% five-year survival rate not encouraging
Hi Bee. I am a member of a transplant forum. There are so many people there that are ten, twenty even twenty eight years post. Admittedly there are some who do not fare so well. But I just want to say the fifty percent average is really a gray area. Sending best wishes. xx 🙋
Caspiana thank you SO much for sharing some positive examples of lung transplant - this is something that's been lacking for me so far and makes me feel a lot better. The transplant forum sounds great - do you think anyone would be willing to talk to me or share their experiences?
Hi Bee61 thanks so much for getting in touch and sharing your own experiences. Interesting that the conversation with the surgeon took place for you after the assessment. Was that directly after the assessment or a few days/weeks later? My assessment has, frustratingly, been moved to 14th February but they're planning to do the tests on the Monday and then have some conversations with me on the Tuesday but I don't know if that includes a conversation with the surgical team.
With you 100% on it being an extremely hard decision to make. The post-transplant problems can indeed be significant and the booklet certainly hasn't painted it in the best light or outlined many of the potential advantages which I know are also significant if it goes well. The survival rate doesn't sound all that promising but I know that that is just an average and each individual case is different. I think what I'm struggling with currently is understanding what the quality of life COULD be like compared to now if it does go well. Not enough info currently on that for me to be able to make a decision on if I would want to go ahead or not.
Wishing you all the very best of luck as you wrestle with the pros and cons, too. If you ever want to talk it over with someone who's in a similar boat, I'm always here.
Apologies for the late reply. Just wanted to wish you the best of luck for Monday. The assessment is very thorough & at least it gives you a clear picture of the state of your health overall. I hope you get a chance to talk through all your concerns - I wrote down a whole list, as did my husband. The talk with the surgeon came some weeks after the assessment - delayed by him being ill for the first appointment. I then saw the transplant consultant a few months after that - but I guess each hospital runs things differently.
Thanks Bee61 ! Frustrating that you had such a gap between the initial assessment and talking to the surgeon and transplant consultant. As you say every hospital will run things differently but if I'm going to go for it then I think I'd want to get on with it as soon as possible rather than hang around as you can be on the waiting list for some time can't you? Really hope you're well and thanks again for your reply
I hope your appointment goes well for you Andy. I would suggest as MMaud says using Zoom or Skype so your wife can join you on this important appointment, its surprising how much we forget what was said or forget to ask something. Good luck x
Thanks Izb1 ! I've had a chat with the team and they're going to make sure that we're all wired up when the assessment and follow up conversations finally go ahead on 14th February.
Stay safe Andy. Good luck with the assessment. Our 11 month grandson is due to have his cleft palate surgery next week. We are currently avoiding all unnecessary contact with the world. We look after his 2 year old brother one day a week. Had to imprison him in the house No soft play. Parks. X
Hi watergazer so sorry for the late reply - it's been a frantic 10 days or so! I hope your grandson's surgery went well and that you're now free to get out and about again a bit. I know what it's like being cooped up. Despite my best efforts I returned a positive PCR test which means that they've had to postpone the assessment to 14th February. Genuinely at a lost as to how this could happen as all my lateral flows have been and remain negative and I've been nowhere at all. I even went to get another PCR test the following day which came back negative! All very strange but the hospital understandably couldn't take any chances hence the delay.
Oh dear You must be cheesed off at having to wait though I know how you feel as my grandson’s op was cut short as he had respiratory issues went they put the tube down his mouth so we’re still waiting too and having to keep out of other peoples ways as much as possible. Our Daughter in law tested positive last Thursday and now her 7 year old has but that’s due to a sleepover at the weekend when one of the kiddies tested positive the next day. We’re doing daily lateral flows for this week What a palaver for us all take care. Will soon be 14th xx
I do shifts at the local Vaccine Hub - all staff, and volunteers, are jabbed up to the holt. Recently, after one session, 7 members of staff tested positive ( I was absolutely fine.)
Thankfully, nobody was terribly unwell. In their cases, most irritated and inconvenienced.
Thinking of you Andy. You're going through so much and taking good decisions to look after yourself. I hope it all goes well and you feel able to make the right decision for you.
Thanks O2Trees . It's certainly been a fair bit to think over in recent times and I think I'm doing ok so far but I'll be relieved when I've made a decision and got everything sorted. I just want to live again!
Thanks Alberta56 . Going to be a massive decision but I'll be relieved when I've finally made it. Was hoping that I'd be beginning to mull it over today armed with all the info after the assessment but it's been pushed on to the 14th February which is a bit of a shame. I'll keep you posted but in the meantime look after yourself and thanks as ever for all your support.
Thanks helenlw7 I did my best to stay Covid free but sadly that wasn't enough to deliver a negative PCR test on Friday which I needed for the assessment to go ahead yesterday. Genuinely at a loss as to how I could have got Covid as I haven't been anywhere. I've also had no symptoms, returned no positive lateral flows and did a second PCR the following day as I was dubious which came back negative. Bonkers really but not much I can do and currently isolating.
Thanks Walkwalkwalk - going to need all the luck I can get. Tough decision but as/when I finally have the transplant assessment I'll hopefully have all the info I need to make a decision.
Thanks Rattle . Tried my best to stay Covid free but fell at the final hurdle with a positive PCR despite consistently returning negative lateral flows before and since. I also did a follow up PCR less than 24 hours later which came back negative so wondering whether the first test was even right. The hospital understandably couldn't take the chance so have rearranged the appointment for 14th February. I'll keep you posted on how I get on
I am pleased to read you are going ahead with the assessment. I will just say most of the patients who go for the first assessment come away feeling rather put off because they will tell you the absolute worse scenario of which there are a couple. 😕 They are bound to do, because they don't want anyone to be underinformed. Most people question if it is the right thing to do after the initial consultation. If you haven't already, I suggest joining an online forum for transplant patients. It gives you a true , informative insight into life before and after transplant from people living the life.
After transplant you the patient will have some restrictions like what you eat, where you go etc. Very often those who live with us will also have to bear with some changes in their lives. It goes with the territory to keep you safe. Although adjustment is not always comfortable, we get used to it.
My only suggestion is to go into this with your eyes wide open. Talk to others who have been through it. Read up on everything you can get your hands on. You are a fit young man (besides your lungs) and I think they will find you to be an excellent candidate. But you have to really want this and be committed to all it entails.
Caspiana thanks so much for this message too! Again, this is just what I wanted to hear and really good info. Initially I was super positive for the transplant but even before the assessment having read all the literature that they sent and having begun doing some further research, I'm definitely a lot less sure. What I'm missing at the moment is a greater understanding of life after transplant and what that can be from a quality of life perspective should all things go well.
I will definitely go in to it with my eyes and ears open and I'd be very interested in joining a forum and talking to others who've been through the process already. Are there any that you'd recommend?
I appreciate that if I do go ahead with the transplant that there will be lots of changes (and sacrifices initially) that both I and my family will have to make. From what I've read in the information that I've been given, I'm well aware of how tough the first 18 months will be and what I can expect but there's not a lot beyond that bar constant reminders of the importance of taking my meds and being on the look out for signs of rejection/infection. I'd love to be able to talk to someone about what it's like say 3, 4, 5 years in that's doing well and how they've adapted.
Join this forum. It is mainly American but it has thousands of members and you will read EVERYTHING others are going through. The ups and downs of it all. There are many like you too, on the fence There are a small handful of Brits.
Sometimes it is grim reading and at other times it is uplifting and so very heartwarming. If you need anything just let me know. I will help you in whatever way I can. 😀
Gosh that's an awful long time to be in Mrbojangles . I'm definitely staying overnight so I'll be sure to pack my pyjamas and a book or two. How did you find the assessment? Are you now on the transplant list?
Gosh I can understand the huge weight of getting information and trying to make weigh up the whole enormous ‘ shall I? Shan’t I ? Situation you find yourself facing. Wishing you good luck and strength in evaluating your options. This, however, could be the beginning of something amazing for you and your family and your lifestyle. Sending you positive vibes and hope you get amazing support every inch of the way in making the right decision and journey for you. 👌 Best wishes going forward xx
Thanks so much for your lovely message rachelmi . As you say it's a bit of an emotional roller coaster and so hard to make a decision when you're dealing with so many unknowns where whichever decision you make comes with risk. Feels a bit like you're damned if you do and damned if you don't. Ultimately I've got to weigh up the pros and the cons and work out whether, on balance, the potential gains from the riskier option of transplant outweighs the less risky but inevitable path that I'll have to face if I don't go for the transplant. I'll be sure to keep you posted on how I get on. Thanks again for the message
Thanks as ever for all your support HungryHufflepuff . Sadly the transplant assessment has had to be moved back to 14th February which is a blow but not too much longer to wait in the grand scheme of things I guess. Hope you're well and having a good week so far?
I’m really sorry to know the assessment was pushed back. It’s not long but I guess you psych yourself up for it and then it doesn’t happen. Hopefully it’ll all go ahead ok on the 14th 👍
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