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double lungs transplant

Purpal profile image
22 Replies

I was diagnosed with pulmonary sarcoidosis in 2020. My condition has worsened over the years to were I now have to been on oxygen all the time m ..I've recently been put on the list for a double lungs transplant after undergoing different test at Birmingham queens hospital .. After reading there web site on transplants i have been going out my mind with worry. There have been reports of more deaths after transplant many died within 5 years after transplant. I'm a 44 year old mum of 2 I have a son 26and a 8 year old daughter .I don't drink or smoke so to be told my lungs are packing up is hard getting my head round ..I've been an all kinds of tablets and steroids nothing's helped my lungs get better left with the decision of lung transplant . Can anyone share there stories if had any bad or good experience at Birmingham hospital.

I'll be very with gratefully feed back

22 Replies
Littlepom profile image

I don't have experience of a lung transplant but I do have many years of attending the QE which is a centre of excellence for many things including transplantation. Unlike other centres they don't tend to 'blow their own trumpet' . I have friends who have had heart liver and kidney transplants there.I am sure that should you decide to persue this option you will get lots of information and support and speak to other patients who have undergone lung transplant.

There are members of the forum who have had a lung transplant and I am sure that they will share their experiences with you.

I do hope that whatever you decide, all goes well for you.

Purpal profile image
Purpal in reply to Littlepom

Thank you so much for your support. I am overwhelmed with peoples kind words and support.. means a lot x

Katinka46 profile image

There are members here who have had lung transplants very successfully. But I do understand your concerns. It is a huge operation. I think you will get a lot of support both before and after the procedure. All the best

Kate x

Purpal profile image
Purpal in reply to Katinka46

Thank you Katinka

Wonderboy6 profile image
Wonderboy6 in reply to Purpal

Just to wish you all the best and hope sincerely, all goes well 🙏 for you 😊. Best 👌 of luck to you 😀

Patk1 profile image

Welcome to the sure you'll find it a great support.Xxx

Alberta56 profile image

Best wishes- i hope all goes well.

Purpal profile image
Purpal in reply to Alberta56

Thank you xx

MELNEL profile image

You concern is totally understand Purpal. It's not any easy operation. But don't think about dying n look out on successful transplants I am also sure there are lots of survival patients who are still alive. Try to stay positive for yourself and your children and talk to them let them know how you feel. Nothing is more important that you get this done to have a quality of life back, that you will get. There are always pro and cons, hope is a powerful word and I do wish you that it will be powerful for you. Best wishes 💝

Purpal profile image
Purpal in reply to MELNEL

Thank you Melnel x

Purpal profile image
Purpal in reply to MELNEL

Thank you so much xx

simplesprout profile image

I can't speak about Birmingham, however I had my double lung transplant at Wythenshawe Manchester just over 3 years ago. As you will no doubt be told by your team, transplant is an individual thing and no two are exactly the same. However if there is any thing you need to ask, I will try my best to assist.Best wishes


LissacFrance profile image

I have no experience of transplants but you always hear the -ve feedback loud and clear but the +ve stuff gets less publicity. At your age it has to be a good option if you want to enjoy your youngest daughter to the full. Not an easy decision I`m sure and there are drawbacks and disappointment with any medical intervention. IMHO, go for it. best wishes, Chris.

Biofreak profile image

Hi Purpal. My husband had a double lung transplant at Wythenshawe Hospital in 2021. He had idiopathic pulmonary fibrosis, has never smoked but had sarcoidosis over 20 years ago and had pneumonia once. He also had silent reflux and the combination of the 3 left his lungs badly scarred. Before the transplant he was on oxygen 24/7 and was deteriorating rapidly and would most definitely not be here if he hadn't hadn't been fortunate enough to have a transplant. I cannot lie it's not an easy ride for anyone after transplant. You have to take anti rejection drugs for the rest of your life and any transplant patient will tell you that no transplant experience is the same. You will get tons of information from your transplant team and a lot of support and monitoring after the transplant so you needn't worry about that. My husband did very well after transplant but has now gone into chronic rejection. He has been unlucky because he knows people who are well 3,6and 8 years later. You are young by comparison to my husband who is 66 now and that in itself is in your favour. I do know that your transplant team wouldn't have put you on the list if they weren't confident you would do well. So I would say embrace the chance of life and most importantly the chance of seeing your dear daughter grow up. Good luck and I wish you well.Linda xx

Purpal profile image
Purpal in reply to Biofreak

Thank you so much your message it attcly brought tears to my eyes... X

Biofreak profile image
Biofreak in reply to Purpal

Oh Purpal, it wasn't my intention but I was being honest and I know how worrying it can be to find yourself in this situation. But even my husband in the situation he now finds himself says that, even with the benefit of hindsight, his decision to go on the transplant list would still be the same. Our two grown up daughters are grateful for the extra time with their Dad and in spite of the chronic rejection my husband, at the moment, is stable.

GintyFerguson profile image

I don't have any relevant experience . I can only welcome you here and wish you the very best of luck going forward. It feels like a transplant is going to give you the best chance to have a good quality of life with your family.

Izb1 profile image

Hi Purpal and welcome to the site. You wouldn't be normal if you weren't worried about having a transplant its a major operation and only you can make that decision. Please look back on previous posts from one of our members Caspiana (click on the members tab, then on posts) who has been through a transplant operation and has been very honest about her experiences. I am sure this will give you a good insight. There are risks with every operation/medication but am sure there are alot more successful operations than we hear about. I wish you all the best and hope you make the right decision for you x

Purpal profile image
Purpal in reply to Izb1

Thank you so much xx

JJ_7 profile image

Welcome to the group Purpal. xxx

Rebecca6 profile image

No experience of transplant but just want to wish you all the best and let you know my prayers go with you. God bless.

Karenanne61 profile image

Hi and welcome to this friendly, funny and informative forum. I haven't had a lung tx but have had tests at Harefield and am being monitored. After discussions with their amazing team I have decided to wait a while before moving forward. For me, the tx is the absolute last resort. The palliative team are helping me manage my symptoms so I can pootle along as I am. I understand your concerns, were you given contact details of the tx team's co ordinator and councillors? Also, as said before, check out Caspiana's posts.

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