Refusing Lung Transplant: A few weeks... - Lung Conditions C...

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Refusing Lung Transplant

hillclimber1 profile image
17 Replies

A few weeks ago my wife's neurologist put her forward for consideration for lung transplant surgery. After consideration, my wife has declined as she feels it represents a great deal of change to her life, in which she is quite content. I go along with her wishes but wondered if this was a decision made by others, and whether they had any regrets?

17 Replies
hillclimber1 profile image
hillclimber1

Sorry that should read neumologist, not neurologist. Autocorrect

Damon1864 profile image
Damon1864Volunteer

I'm sure your wife is happy with the decision she has made I hope she doesn't feel later that she should have taken the chance . Only time will tell but I think she is a very brave lady, and she has you and all of us here to support her. You and your wife have a lovely day and take care 😊 Bernadette and Jack 🐕 xxxxxx 🌻🌻

Caspiana profile image
Caspiana

Hi Hillclimber,

Everyone is different and your wife is correct there will be major changes after transplant, quite a bit of work , discipline too and sometimes some bumps in the road. I have a friend who declined stating he'd rather spend the time with his family than in hospital and that he was unsure it was the best thing for him to do . He is still living six years after the fact. I was also unsure but I went through with it. I think it was the best choice I made, but of course I had no way of knowing how it would turn out. I have been very fortunate. I informed my family I didn't want them to force their opinions on me, as I wanted to make this decision for myself. And that was very helpful. Your wife must REALLY want to do this and it must be her decision, though I understand your concern. Life after transplant can be marvellous for some and more tedious for others. It is a bit of a gamble. The important thing is she makes the decision she is most at peace with.

Best wishes to you both.

Cas xx 🍀

hillclimber1 profile image
hillclimber1 in reply to Caspiana

Hi. Thank you for honest reply. If there is one thing I know, it is that my wife does not change her mind, so would never be looking to influence her decision. I completely understand her choice and feel that those lifestyle changes would be difficult for her. She told her friend, who was so excited that she was going to be “better”. My wife is now starting to feel that people would not understand her path, which is why I posted the question as this must have been a dilemma for other people.

Caspiana profile image
Caspiana in reply to hillclimber1

Remind your wife that she is on her own path and that means she gets to decide what she wants. Everyone else's opinion (friends) is irrelevant. And if they don't understand, they do not deserve a seat at her table. Support is vital , criticism uncalled for.

crystalboots profile image
crystalboots in reply to Caspiana

hear hear well said

👍

CDPO16 profile image
CDPO16

I think that the main thing is that your wife is content and comfortable with her decision and has your support too. Transplant was never an option for me but had it been I think that I would have declined it too.

Biofreak profile image
Biofreak

Hi hillclimber. I think the decision is a very personal one and only the sufferer can decide what is best for them. Your wife, I'm sure, will have thought very hard about everything before making her decision. It's not an easy ride after transplant and is by no means guaranteed to make ones quality of life better and is fraught with risks. For some its not only a life saver but also life changing and involves hard work to maintain ones health afterwards. Anti rejection drugs and many other drugs are also involved. My husband had a much wanted lung transplant last June and his path has been dogged with difficulties. A lot of people think that a transplant will make you "better" and in some cases it does (in comparison to how ill you were before) but in general people don't know that great health isn't guaranteed at all and can be just the opposite. Take comfort in knowing that your wife is content with her choice. I have been in your shoes. Best wishes.

MoyB profile image
MoyB

It must be very difficult to be in your position. In many ways, I think life can be so much easier for the person who is ill. They know exactly how they feel and make their decisions, big and small, based on that but their partner is always left guessing.

'Do they really feel well enough to go out or are they doing it to please me?' 'Do they want to cook dinner or do they really need me to step up tonight?' 'Do they really want to go on holiday or is it that they know I could do with a break?'

These are a few of the everyday questions my husband asks himself but he can only guess the answers as although I'm usually honest, there are times when I need to put him first and may bend the truth a little.

So what I'm trying to say really is that you can never truly know what your partner is thinking and so all you can do is go with it, whatever they decide and then it must be their own responsibilty.

I love that you are asking others how they felt after making such a major decision to turn down the opportunity of a transplant as I guess you want to be sure that your wife won't regret it later. But I wonder how you are feeling about it? Will you regret her decision not to have it done, or will you be content to live with it? It's such a big decision which affects you both and so I hope you are having an opportunity to talk things through with someone without your wife being present so that you can be totally honest about your own feelings.

Whether or not you agree with your wife's decision, you need an opportunity to get your feelings out in the open so that you have the support yourself to continue supporting her.

You may have close family or friends who you can talk to confidentially, but also Care for the Carers offer counselling sessions (3 month wait, though). There may be something available via the respiratory service, perhaps? Maybe it would be good to speak to someone on the ALUK helpline. Sometimes we just need to say things out loud to someone we don't know and get them off our chest.

Best wishes to you both. I hope everything works out ok.

xx Moy

hillclimber1 profile image
hillclimber1 in reply to MoyB

Thank you so much for your response. I can feel how deeply personal your words were. I have an awesome friend who knows us both and I with whom I discuss matters. They rarely give any opinion, just listen. I have some other dear friends who are very good fixers, but with my wife’s conditions that is just not possible.

We live in Spain so don’t have access to some of those facilities but I have a network of good people and people who I have never met on this group.

MoyB profile image
MoyB in reply to hillclimber1

I am so glad you have a friend you can talk to. Unfortunately this is not the case for every one as there are a lot of friends who want to be 'fixers'. Maybe I'm also one of those people too, but my reply was written with good intentions which I know you realise.

I sincerely wish you both the opportunity to make more good memories together and for your wife to keep well for as long as possible. ❤️Xx Moy

Bee61 profile image
Bee61

I am in a similar position to your wife and have been offered a lung transplant which I am refusing. It is such a hard decision but I felt the potential benefits of transplant were outweighed by the potential risks - which are high - & the post-transplant life seems fraught with problems of rejection, adverse reactions to drugs & their side-effects, increased risk of infection, etc which would all have an impact on my ability to enjoy whatever time I have left with my family. The thought of living in constant anticipation of 'the call' is also stressful - especially as the chances of receiving a lung are pretty low. I spent many hours thinking of the pros and cons, but when I realised I could just say no to transplant I suddenly felt at peace - so I think I'm making the right decision for me. I have talked to my immediate family about it and they are supportive and understanding.I wish you and your wife all the very best in enjoying your life together

Littlechoceclair profile image
Littlechoceclair

Hello hillclimber1 I too made the same decision as your wife after I went through all the tests etc for transplant. I decided it would only give me 5 years of good life anyway and the amount of anti rejection drugs and the damage to other organs such as kidneys etc from having to take those drugs just wasnt worth it. That was 5 years ago now and Iam still going along ok. A lot of people who have transplant end up having kidney transplants as well after a few years due to the damage caused by the anti rejection drugs or at least on dialysis. Its a massive operation and unless I was on my death bed I wasnt prepared to do it either. I mean just because you are on anti rejection drugs they cant guarantee you that your body wont reject it. Then what ? An iron lung???? Thanks but no thanks.Good luck to you both and big hugs

hillclimber1 profile image
hillclimber1 in reply to Littlechoceclair

Thank you for you response. The response from yourself and others really resonates. Because of my wife’s condition we live fairly quiet lives. As her situation changes we make small adjustments and carry on. I don’t think we are ready for the massive upheaval this operation would cause.

casey16gatsby profile image
casey16gatsby

I agree with all of the comments. It is a very personal and difficult decision. No right or wrong: it's your decision.

Like Caspiana I chose to go forward. I am happy now with that decision. It was a difficult road, but my quality of life is much, much better now. I have no idea how long that will last: we'll see.

My best wishes to you both,

JCL

Caspiana profile image
Caspiana in reply to casey16gatsby

In the same boat. We don't know when the tide will turn but until then we enjoy what we have. xx ♥️

crystalboots profile image
crystalboots

its her desision tell her well done.

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