post lung transplant

[Northernsaul]

I have recently been accepted on the lung transplant list (November).

I would value any advise/experience on the subject.

I apparently have a very good blood group thus estimated waiting 50% 6 months, 80% 12 months.

Thank you in advance

Paul.

[CDPO16]

Congratulations and good luck. I would suggest that you look up Caspiana under the members list. She had a successful lung transplant and has talked about it in her posts.

[Northernsaul in reply to CDPO16]

thank you, I will try to make contact

[CDPO16 in reply to Northernsaul]

She has been taking time out recently but if you look her up under members and then look at her posts she talked a lot about her transplant pre and post op. You'll have to go back quite a way as she is over 3 years post op now. There are other member who have had transplants but they rarely come on the forum now so may not see your post.

[Caspiana in reply to CDPO16]

😊👋

[Caspiana]

Hello Paul. This forum is a great group but not many have had a transplant. I encourage you to join this forum on Facebook (link below). All the people there have had a transplant or are waiting. There is a wealth of knowledge and experience. Reading other's experiences will lead you to questions, questions lead to understanding and understanding to knowledge. The more knowledge you have the more prepared you are for any situation. And importantly knowledge dispels fear.

My immediate advice is to stay active. Walk daily for as long as you can. The stronger you are physically, the easier healing will be.

Best wishes for your journey.

Caspiana 👋😊

facebook.com/groups/LungTra...

[MoyB in reply to Caspiana]

Nice to see you have posted today. Hope all is well and life is good! Happy New year, Cas. Xx Moy

[Caspiana in reply to MoyB]

Thank you so much Moy. I am trying to be more active on the forum. I hope you have a lovely start to the coming year. Much love. xx ❤️

[MoyB in reply to Caspiana]

👍❤️Xx Moy

[Alberta56]

Best wishes for a speedy transplant and a speedy recovery afterwards.

[MoyB]

Best wishes to you on your transplant journey. We have another member who is at the top of the transplant list and has been called a few times but unable to proceed when the time came.He may join the post. Won't mention the name in case he's taking time out at the moment.

Xx Moy

[Izb1]

I see you have had a reply from Caspiana who has taken us through her transplant journey, i am sure you will find this very interesting as we all did. I wish you well and hope that you dont wait too long x

[Caspiana in reply to Izb1]

😊👋

[oooodicky]

how old are you Paul ??

[simplesprout]

Hi Northersaul, I'm 3 and half year post transplant ( double lung ) which was done at Wythenshaw Manchester. If I can help you with any questions, I will, however as I am sure they will have already told you, there is no one size fits all. Even down to post TX medication, it's all tailored to the individual recipient.

[Karenanne61]

Good luck on your tx journey. I see Caspiana has posted, she's amazing! As others have said there is another member who has had a couple of dry runs, hopefully he'll be along soon. Which centre are you under? I'm under Harefield but hovering on the periphery at the moment.

[casey16gatsby]

I'm a little over 2 Years -- Post Double Lung Transplant, in the USA. I only had to wait about a month. Like you I had a favorable blood type . I was in very bad shape prior to my transplant; oxygen 24/7 at a high level and I was basically bed bound. As a result my recovery was longer and more difficult than most but now I'm living a full excellent life. I walk miles a day and an able to things I hadn't done in years. I was 66 1/2 years old at transplant. My COPD was due to the hereditary condition Alpha 1 Antitrypsin Deficiency. In my case the transplant gave me a miracle 2nd. Chance at Life!

All the Best!

JCL

[Gambletron]

Paul m’y dad got on the list in November and just got called 30 days ago. Lucky match. It went quick for him/ he waited only a month . We were surprised . My pals dad got called after four months.