Lung transplant - how do youmake that... - British Lung Foun...

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Lung transplant - how do youmake that decision?

hi everyone,I have just been told that I forfill the criteria for a double lung transplant at Birmingham QE.

It’s massive news and I am delighted to be accepted and have that chance, however I’m not sure I’m ready to make that decision. It all feels a bit surreal.

I lost my partner 2 years ago to cancer and don’t really have anyone apart from my now grown children to mull it over with.

How do you go about making such a huge decision?

Any input is welcome, I’m feeling out of my depth.

Thanks everyone for all your support

Love K

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Hi you don't sound too sure about the transplant, but only you can decide if you want to go through with it. Have you talked to your GP, Nurse or consultant about it. Talk to your family and friends it will help. Hope you make the right decision for you, please let us know. Maybe someone on here can help , I really hope so. Take care.

😊 Bernadette xx

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Hi Bernadette,

Thanks for your reply. It’s early days and I’m feeling a bit overwhelmed but I will talk to my gp and I’m going back to Birmingham next month to see the transplant psychologist and to meet someone who has been through the procedure. I’m also talking it through with my family.

It’s wonderful to have so many responses and help here.

Warm wishes

K X

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I really do hope everything goes well for you, please keep us all informed. Don't forget to keep posting, take care.

😊 Bernadette xx

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Hi Kelda, that is great news...and you now have options. Let the info sink in and weigh up all the positives being offered to you and live your life to its full potential xx

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Cheers Sukio1,

Good advice. I’ll do my best.🙂

Good health to you and my thanks.

Love K X

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Hi Hun. I replied to you on QueenBean's post. xxxxx

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Hi. Dont feel you have to make a final decision today. You may have so many questions that your nearest and dearest can't answer. Take a deal breath(no pun intended) but definitely speak to your GP or Lung Con.

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Thanks Squirrelsholt,

I’ll do that. There is a lot to consider and I’ll probably have loads of questions. When I was there, there was so much information to absorb after 3 days of tests that my brain started to fog over and I just wanted to get home, but they are happy to wait for me to decide. It’s good to talk to other people and get their personal first hand experiences rather than just read about it.

Good luck to you and thanks.

Love K

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Hi kelda,

Such a huge decision and it is something I so had to make when I was told I needed a lung transplant. I had no choice I needed it or I'd be dead within a year. I also had a little girl who I needed to be there for. Decision made I was having it. I waited 7 months and then I got the chance and here I am two years later sucrssfully lung transplant living life to the full and I'm here to see my daughter grow up. For me there was no alternative. Think of the things you miss out on if you didn't have the transplant? And think of the things you see if you do?

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Hi ejbid,

Thanks for your uplifting post.

What a wonderful result. It’s a lot to get my head round, but I will get there. It could be amazing. I’m sure if I go through with it I’ll be asking loads of questions and your input will be much appreciated.

The best of luck for the future.

Love K X

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Well done. My consultant mentioned that I may fit the criteria for lung transplant. My hubby said I looked shocked and pleased at the same . Like yourself so many questions to ask. I wonder if there other people who live nearby to us ( I live in Birmingham as well) who we can talk to sometimes I think talking to someone who's had the same thing done could help. Obviously keeping in mind the nurses and consultants to 3rd ok to you don't say how old you are I'm 58. Hubby still with me our daughter all grown up we lost our Son about 6 years ago to a rare illness. While he was here he was supportive I'd just been diagnosed with copd. You will be amazed how your kids can help. Tell them your worries fears or may be talk to a close friend or relative don't bottle it up. Best wishes

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Hi Lizzric,

Thanks so much for your post. I’m sorry to hear that you lost your son. I too lost my first son, to Sids 28 years ago now and my daughter was still-born 4 years later. You never forget. He was only 6 months old. They are both forever in my heart. I now have two children; my beautiful daughter who is 26 and my wonderful son who is 20.

It’s good to talk things over with people who have gone through or are in the same position. I’ve never been great at asking for help. I’m beginning to realise it’s one of my biggest faults. Im 50 soon to be 51. My kids are fantastic and I’m so proud of them. They’ve had so much to cope with over the last 21/2 years ; my Illness getting much worse and losing there dad.

They give me so much support. Now we have this opertunity. It could change so much. It could be wonderful, but there’s no guarentees and it’s such a risk. I’ll get there eventually I just need to have faith that I’ll make the right call.

Wishing you good health and good luck

Love K X

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Thank you. Speak soon.

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If you have Facebook you can find loads of support groups for transplant pre and post and family and friends . If you just type in lung transplant it will bring groups up. I'm on the harefield transplant support group and freeman's support group and they have been invaluable to me x

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Hi Kelda . 😀

I have been on the waiting list for seventeen months now. I also found it hard to make the decision. I spoke to my family a lot about the pros and cons. They listened and let me bounce my fears off of them, but I am grateful that they never told me what to do. I knew I had to and wanted to decide for myself. At one point I almost thought I should just let nature take it's course, since my children were grown and were no longer dependant on me. But then, I thought of the things I'd always dreamed of doing , nothing grandiose but simple things like running with my dog on a beautiful beach, or spending time with my aged mum, being part of the lives of my future grandchildren, and I thought to myself "Are those things worth the risk?" . And I had to conclude that they were very worth it.

Transplant is not for everyone. It is such an individual choice. Don't rush.

I hope you find peace with your decision.

Warm wishes,

Cas xx 🌿🍂

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Hi Caspiana,

Thanks for your post, you sound just like me. I know it’s early days and I need to think this out and learn more about how it all works. The team are arranging for me to meet someone who had a transplant a year ago, so that will be invaluable I think.

I hope you get your transplant soon. The best of luck to you.

Love K X

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for me it was simples live or die so no brainer and id do all again in a hart beat qe is brill to loads of after care

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Hi sibkev

Thanks for your post. Well done on making such a good recovery. I’m sure I’ll probably have loads of questions for you as this plays out.

Good health to you

K X

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Hi Kelda.... we had to make that decision for our 10year old son 18 months ago. It was most difficult as we had to decide whether to put him through it. In the end I was ready to commit and his dad was not ready yet so we waited 3-4 months before deciding. At that point it was a no brainier as he was deteriorating but I think you need to be in the right place so do it when it feels right to you. That way you will be both mentally and physically prepared. Feel free to pm me and good luck xx

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Hi ClaireS75,

Thank you so much for your reply. You have been through so much. It’s one thing to make this decision for me but as a parent it must have been worse. I can understand his dad’s initial reluctance. I would do anything for my kids and they play a huge part of this decision, even though the youngest is now 20. It puts it into perspective, though and I’m constantly aware of the clock ticking away in the background. I just need some time to let it all sink in I think and I need to have faith that I will make the right decision for me and my family. It’s an incredable offer of what could be a better future, after all.

I hope that your som is now in a better, healthier place and wish you all the luck in the world.

Love K X

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Hi Kelda,

In May this year I had a double Lung Transplant, the decision was one of the hardest things to make, but once you decide just go for whatever you choose. However PLEASE READ THE FACTS, its after the transplant that you have to be prepared. Read the book you should have been given. I flicked through it not realising some of the disadvantages that could Occur.There are lots of drugs to be taken each day, it will be hard for you to remember them all, some drugs i was on made me feel really sick, or upset my stomach, its trying and testing until they get it right. The fatigue will slow you down, read up on the side effects..some will happen some won't, we are all different. I would not have made it until Christmas, I have two grandchildren and that was my incentive, i want to have fun and spend time with them. I also live alone, and it can be hard until the strength comes back, but you will manage. I am scared to write too much, it is a big decision, at times i have regretted having the transplant when physically its been hard to cope. However I know i did the right thing. All the best for you, please take care and read ALL THE INFO before you make decision. Good Luck xxx

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Hi Ross. Just wondering where you had your transplant. I'm on the list at harefield x

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Hiya I had mine done at Wythenshawe Hospital in Manchester a superb place and its like a family visit when i go for check ups. I am sure you will also be taken care of at Harefield and i wish you a speedy wait. x

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*HUGS* ross-35_ Hang in there. xx 🌿

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Hiya I really hope you get your transplant very soon...I had a friend of mine to phone up the Unit and tell them i was a lot worse than i was...in fairness i was very ill...two weeks later i got the phone call to go! So see if a bit of pressure can help you too. I wish you well. x

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Hello Ross. 👋

In a way I do want to get the operation soon. But on the other hand , because of all the reading up I have done, I know perfectly well all the difficulties that could arise post-transplant. So, I enjoy every day I have now, rather than live in the hope that transplant will give me back a somewhat normal existence. Of course if I can live without oxygen, be able to run again and feel good, that would be absolutely fantastic. 😀

Take good care. xx 🙋🐕

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Hi Ross-35

Thanks for your honest reply. I like you flipped through the book the morning before the final meeting. There’s so much information. I can’t really remember what questions I asked. I don’t know how to weigh up the pros and cons ,either can be extreme, maybe it just comes down to luck. I’ve been ill for so long I can’t imagine what it would be like to be off the oxygen and to be able to breathe.

It’s an amazing thing they do and it could change my life.

You sound like an incredably strong person and I’m really pleased to meet you.

Good luck with your ongoing recovery. May you go from strength to strength.

K X

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Hi Kelda,

I hope i wasn't too honest! I wish you lots of luck, and a speedy waiting list! Take care and if you need me just write xx

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Hi Kelda

Well at least now you know that transplant is an option open to you.

So nows the time to find out as much as you can from actual people whom have gone through the transplant op. I do know Birmingham Is one of the leaders in this field. It may take a while for a transplant but worth starting your considerations now to at least get you on the waiting list. Let the info sink in and make enquiries where you can. There may be support groups offering advise and real information worldwide as well as on here.

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Thanks Chriskho,

I will do that. I know we’re all different but first hand advice will be invaluble and forewarned is forearmed- (sorry for all the cliche)

I’m just trying to talk to as many people as possible and get all the facts.

There’s a lot to consider, I’m a little overwhelmed but hopefully the fog will clear soon and I’ll know.

Good health and thanks for your advice.

Love K X

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As someone who is on the list I would suggest you do all the assessments then ask all the questions you have. I waited a few years before I said yes and I wish I had said yes sooner. X

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Hi Kelda .. if this were me I think I’d need a few days to let things settle .. ask questions .. maybe have a family meeting? .. get a wee book and write everything down .. good luck xx

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What ever you decide will be the right decision because you made it

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Thanks for all your good advice. I’m having a few days trying not to think too much about it, going back up to Birmingham I’m a couple of weeks so I’ll be sure to write all my questions down before I go.

Love K

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