Emotional issues and transplant ?

[kristina]

Hello,
I have been wondering how transplant-recipients deal with the psychological issues when their beloved partner offers one of their kidneys?
In my case my husband donates a kidney in a  "Paired and Pooled“ situation. We are extremely close and my husband has helped me and supported me through some very difficult health-problems, such as the stroke I suffered, to name just one.
Up until the present day I have been fighting and dealing with my health-issues in an independant manner with my husband close-by with his support. But now, with his donation of a kidney, I am involving not only another human being who is willingly letting go one of his major organs but also my dear husband. I therefore take on a degree of responsibility for anything which may go wrong with my husband’s work-up, operation and post-operative issues – which can vary enormously. I feel at this moment in a bit of a turmoil in my mind as to how to deal with this situation. If anything happened to my husband I would be devastated and If I lost the kidney after the transplant, how would I feel then about my husband who has given away one of his kidneys?
It is a difficult situation for me to get my mind round, because on the one hand I know transplant, if it works, is by far the best option to live a longer life with a better quality of life, yet on the other hand it could go wrong either with me or my husband and then I am left feeling totally and utterly devastated. I keep turning over this predicament in my mind and I can’t achieve a calmness about it and I am stuck in this turmoil.
Of course, my husband need not be involved and I could just wait for a kidney on the transplant-list, but this is not a good option for me because my medical history, current state of health and dialysis itself may cause me not to live long and therefore it is possible I won’t live long enough to receive a kidney whilst waiting on the waiting-list. This is why my husband has offered to donate a kidney.
Has anyone been through this and how does it work with the emotional issues involved and could I be overreacting?
Thanks from Kristina.

[MooseMom]

Kristina, I have not been through this, so my thoughts may be of no interest to you, but here are some anyway.  LOL!

There is only so much that you can do in this world.  You cannot control every little thing that happens in your universe.  You must remember that other people have free will and can make decisions for themselves.

Your husband loves you and wants to help.  I am sure he is an intelligent man and understands the risks/rewards that donating a kidney for you might bring.  Do you believe that he has all of the information he needs to make an informed decision?  If you think he doesn't, then he must acquire that information.  But I am sure that you note and value his intelligence, so questioning his decision may be, and I say this ever so gently, somewhat of an insult.

You must remember that he is not donating solely for your benefit.  Having a healthier, happier wife benefits him, also.  His life has been impacted by your illness and by your dialysis sessions.  I have no doubt that he looks forward to the day when you can enjoy better health and be rid of the time sucker that is dialysis.

You are not responsible for either his choices or his actions.  Those are his responsibility.  He is not a child. 

He wants you to live.  He loves you.  He wants to be with you.  He wants his wife by his side.  He is doing what he can to fulfill these desires.  He is being selfish, looking to get what he wants, and quite right, too!!

Trust him.

 

[coravh]

Kristina, here are my current thoughts on this. My cousin gave me my kidney quite some time ago and I went through all the issues you are currently going through. And one day my current gift will fail, and my dear hubby has already offered. In our peer support group here at home, I now pose this scenario. What would you do if your house was on fire and your hubby trapped inside? Would you brave the smoke and run in to help him? Of course you would. You love him. So let him do the same for you. The major difference is that donating a kidney is infinitely safer than that rushing into a burning building. All the medical staff are going to make sure that all foreseeable things will be taken care of before surgery. You will be able to rest safely knowing that he is in excellent health. And in return, you will do everything within your power to take care of that gift. That means seeing the docs, taking your pills, eating and exercising well and to your abilities, staying hydrated, and basically doing the best you can. No donated organ lasts forever and no one can predict the future. All you can do is the best you can.

[kristina]

Thank you for your kind replies MooseMom and coravh, I appreciate very much what you have written
and your thoughts have kindly assisted me to get my own thoughts back into "the right gear".
My husband and I have again talked about it and he has again assured me. He thinks very practical about donating a kidney
so that I can have a transplant and he has told me that it is much better for both of us if I have a transplant,
because that gives us a chance to have more time together, instead of us driving three times every week to the dialysis-centre,
"hanging around there" whilst I am being "cabled-up" during the next four hours and then travelling back home again...
... The information we get about the forthcoming transplant is very hazy and we are practically every day on the telephone
trying to find out how "things" develop but unfortunately we get confusing answers.
The preparation for the transplant does not seem to be managed in an overly constructive way and that comes as a shock,
because if the management to "put things constructively together" for the preparation is already hazy, what about the operation ?
Is it usual that the preparation of both the recipient and donor for a transplant is confusing?
Is it generally hard to come across a positive management and a constructive way forward in the transplant section?
Thanks again from Kristina.

[MooseMom]

I can't speak for the NHS, but I didn't find my own preparation by my tx center to be confusing.

As for the operation itself, mine was pretty straightforward.  The surgeons have nothing to do with the bureaucracy a patient encounters before s/he lands in theatre.

I hope your tx hospital gives you more clarity soon.  Let us know what you find out.

[PaulBC]

Hi Kristina. I'm probably not adding anything that wasn't already said, but I have had a lot of time lately to reflect on the sacrifices and risks we undergo for the people we love. One thing I believe strongly is that you should not feel any guilt over accepting an offer like your husband's.

I also agree with your point that it is pretty scary to think of worst case outcomes. But waiting around feeling helpless is also terrible. I'm sure your husband feels compelled to help you in any way he can. You might want to let him off the hook but he's on the hook either way. You just have to reach a decision that both of you can accept.

[kristina]

Thanks for your kind thoughts MooseMom,
i don't know whether these difficulties are connected to bureaucracy or whether it is something else altogether,
but whatever it is, it surely keeps us very busy telephoning and trying to organize a positive way forward...
... I was recently told that I need an angiogram and I wonder about it, because "my" Systemic Lupus and MCTD
are the reason why my body reacts allergic to the injected white liquid which shows the body-function clearer... 
Thanks again from Kristina.

[kristina]

Hi Kristina. I'm probably not adding anything that wasn't already said, but I have had a lot of time lately to reflect on the sacrifices and risks we undergo for the people we love. One thing I believe strongly is that you should not feel any guilt over accepting an offer like your husband's.

I also agree with your point that it is pretty scary to think of worst case outcomes. But waiting around feeling helpless is also terrible. I'm sure your husband feels compelled to help you in any way he can. You might want to let him off the hook but he's on the hook either way. You just have to reach a decision that both of you can accept.

Thank you for your input Paul,
Strangely enough it was my husband who first talked about the practicality of a transplant.
That was years ago, whilst I was still fighting to keep my kidney function going...
... I am now coming to terms with the idea, that a transplant is the way forward...
Thanks again from Kristina.

[PaulBC]

I had some more thoughts, and I wanted to address this, specifically.

If I lost the kidney after the transplant, how would I feel then about my husband who has given away one of his kidneys?

Obviously, I would not presume to tell you how to feel, but this is a really difficult question. Putting aside even worse outcomes, suppose the transplant fails rapidly.

Assuming you and your husband enter into this with sound medical advice, and every expectation of a successful transplant, then--obviously you will feel terrible about such an outcome, but--that doesn't make it a mistake. You have to look at any decision in terms of what you know ahead of time, not in terms of what you cannot possibly control. Apart from that, you probably need to know how your husband would feel about it.

It's very easy to look at averages and go ahead thinking everything will be fine (in fact, I sometimes get this attitude from doctors who may have been fortunate enough to evade really bad outcomes so far). The truth is that everything might not be fine afterwards, but you can't be paralyzed by risk either. As I said before, probably the worst thing is waiting around feeling helpless. That doesn't mean you should just "do something", but in your case it sounds like there are beneficial actions, though they involve a calculated risk, that you and your husband can take. I wish you all the best, and I can appreciate how difficult this is.

[edited my phrasing to be clearer about where I stand on the risk question here]

[kristina]

Many thanks again for your kind thoughts Paul,
... My husband had a thorough check-up instigated by his GP (they obviously wanted to know)
and he was found to be fit and healthy.
... I should mention here that my husband has been a "passionate golfer" throughout his whole life
and it obviously has helped him to keep fit and healthy ...
... We are aware that this operation is not without risks and we are both prepared to take these risks...
... You are right, everything might not be fine afterwards
and it would not help to get emotionally paralyzed by a fear of involved risks ...
Thanks again from Kristina.

[Athena]

Kristina,

This is a very tough situation to be in and I hope to never face the situation you're in. I empathise very much. From my reading, I do know one thing. That someone who's fit and healthy is by far in the best position to be able to tolerate the "injury" of letting go of one kidney. I do know someone who lost his kidney (due to a cyst) in his late 30s and is now late 60s whose remaining kidney is doing just fine, and this is after undergoing chemotherapy in his 50s. That's 30 years of normal kidney function.

Whenever I think of transplantation I always imagine that it would be a dead person's kidney that suddenly became available. Are you on such a waiting list to enable that to happen?

I truly wish you the best.

[kristina]

Thank you Athena for your understanding and kind wishes.
The nephrologist has put me on the kidney-transplant-waiting-list, but we have also been told
that it brings "quicker results", if my husband and I go for the option of "Paired and Pooled"...
Thanks again from Kristina.