Transplant Assessment D-day - British Lung Foun...

British Lung Foundation

50,464 members60,477 posts

Transplant Assessment D-day

dodgylungrunner profile image
dodgylungrunnerBritish Lung Foundation

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

31 Replies

Stay safe and well Andy and good luck to you. Let us know how things go. Thinking of you. Xxx👍💜🤗

Take care of yourself and good luck going forward.

Damon1864 profile image
Damon1864Volunteer

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

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.

Caspiana profile image
Caspiana in reply to mary1956

💕

I’m thinking about you Andy. I do hope that the assessment goes well and helps you to make your very big decision.x

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!

Good luck on the 24th Dodgylungsrunner .

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.

Good luck you will gets a lot of reassurance at your assessment. Which transplant hospital are you going to?

Hi Andy wishing you the best of luck for your transplant x

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!🌿🌱👍

Good luck with staying safe and with the assessment in 10 days time.

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.

Good luck Andy. Keep us up to date with progress. John

All best wishes and best of luck with everything

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.

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

Caspiana profile image
Caspiana in reply to Bee61

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 🙋

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

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

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. :)

You sound to have got everything in place, so stay well and stay safe and good luck on the day. We will be thinking of you xxx😊

Good luck Andy. Hope the decision isn't too hard to make.

It seems as if you’ve got things well thought out as far as keeping Covid free. Good luck with your assessment. Please let us know how you get on.

Good wishes Andy for this next stage in the process of deciding if lung transplant is for you. Grace

Best of luck both with staying covid-free so the assessment can go ahead and with your decision

Hi Andy, 😊

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.

Very best wishes.

Cas xx 🙋

Hi Andy,I was in for 6 days having my assessments so bring a spare pair of pj’s and a good book.

Good luck..

👍

All the best 🤞🏼xxx

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

Good Luck! Do let us know how it goes. 👍

You may also like...