Lung Transplant Assessment

[dodgylungrunner]

Yesterday I had my lung transplant assessment appointment at the Harefield Hospital fully aware that it was going to be a full on experience packed full of tests and various meetings with members of the lung transplant team where I'd be being given an awful lot of information to process.

I'm really glad that I did read others posts, too, as it was a pretty full on day with a 6.30 start to get there for a 9 am start. For anyone that hasn't had a lung transplant assessment the morning involves all manner of tests to check that your potentially eligible. In the space of 4 hours I had blood tests checking everything from HIV and hepatitis to your blood group and level of antibodies in your blood, a chest X-ray, a heart echo and a transplant ECG. I also had to provide urine and sputum samples and complete a set of MRSA swabs.

Ironically, I didn't actually do any lung function tests as they didn't want to take any risks after the pneumothorax but normally I'd have done these too. Sandwiched in-between all this was a chat with one of the recipient transplant co-ordinators who was lovely.

After a break for lunch it was a chat with one of the lung transplant team to find out more about my history and establish my quality of life at the moment before finally meeting the Dr who is THE transplant specialist.

The Dr was fascinating and did a brilliant job of outlining where we were at and what the next steps were. In a nutshell he told me that I was eligible for a transplant and had a high chance of finding a donor when the time comes due to my blood type, lung size and height/weight. He was patient with all my questions and didn't baulk in giving me the survival rate percentages - 90% 1 year, 60% 5 years and 50% 10 years +.

What stuck with me from our meeting was the fact that the numbers alone don't decide when someone has a transplant so I shouldn't get too hung up on those. Ultimately, it's how you feel and how your condition impacts on your quality of life that determines when the transplant will become an option to consider.

For me, lung transplant is still sometime away as it stands but it's reassuring to know that I'm eligible and even more reassuring to know that I'll be in such safe hands if/when the time comes. In the meantime, I'm going to do everything I can to stay fit and healthy and keep pushing my lungs starting with this 100k coastal path challenge at the weekend.

Huge thanks to everyone that's supported me - I've already raised nearly £400 and I haven't walked a single step yet! If you'd like to make a donation you can do so here: justgiving.com/fundraising/...

[sassy59]

Very best of luck to you and wishing you a very bright future ahead. You’re doing all the right things so keep it going. Take care xxxxxx

[dodgylungrunner British Lung Foundation in reply to sassy59]

Thanks Sassy! I'm going to need a bit of luck to make it round that coast line in one piece! Never been one to shirk a challenge though and will give it my best shot. Really hope all's well with you and thanks again for taking the time to leave a message.

[breatheeasy1]

Hi I'm pleased it all went so well and was a positive day...albeit a long one! Wishing you the best of luck with the fundraising x

[dodgylungrunner British Lung Foundation in reply to breatheeasy1]

Thanks breatheasy1. It was certainly a long day but without question a positive one overall. I feel so much more calm about everything than I did a year or even 6 months ago now and know I just have to keep plugging away and doing what I'm doing for what I hope is many years to come before I need to consider the lung transplant more urgently.

[cofdrop-UK]

A long day Andy but as you say very reassuring knowing you are in safe hands.

Wow you are doing well - soon be at your target and beyond.

Love cx

[dodgylungrunner British Lung Foundation in reply to cofdrop-UK]

Thank you! Amazed by how well the fundraising is going considering I haven't even taken a step yet! The team at the Harefield are fantastic and I certainly feel so much more optimistic about the future than I did before. Thanks so much for all your support with everything - I'll keep you updated on how I get on with the walk over the weekend

[Caspiana]

So glad you've started the process dodgylungrunner . I hope it continues to go smoothly. The numbers are a bit daunting initially, but as I struggle more, I think a year of quality (or more than a year, hopefully) is better than ten, struggling away.

Take good care.

Cas xx 🐾👍

[dodgylungrunner British Lung Foundation in reply to Caspiana]

Thanks Caspiana. The numbers were certainly getting me down at the beginning but I'm now a lot more at peace with everything and completely agree that looking at enjoying the quality life while you still have it is the way forward. Hopefully I'll have a decent quality of life for a fair few years yet as I've still got loads I want to achieve before taking on a transplant!

Really hope all's going ok for you and wish you all the best going forwards - have you also started the lung transplant process?

[Caspiana in reply to dodgylungrunner]

I've been listed for fourteen months. 😊