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Offline NadineP21

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Family support
« on: November 11, 2018, 12:50:41 PM »
Hello, I am in the process of qualifying to be a donor for my nephew.  My husband is understandably concerned about the risks, both short and long term.  We met with the nephrologist, and I have talked with my donor advocate.  I have offered to have him talk with donor spouses, but to date he has been unwilling, stating nothing will change his mind.  I am very conflicted as I want to donate but would prefer my husband to be on board with the decision.  Has anyone had a similar experience?  Thank you. 
Nadine

Offline Fr Pat

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Re: Family support
« Reply #1 on: November 11, 2018, 06:46:13 PM »
You might want to post this also at the FaceBook page of Living Donors on Line, as more donors check in there these days rather than here.
    best wishes,
      Fr. Pat

Offline willow123

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Re: Family support
« Reply #2 on: November 11, 2018, 06:57:03 PM »
Hi Nadine.  I can completely relate to your husband.  My spouse has siblings with a genetic kidney disease--for the past 15 years or so he has been lined up do donate to one or another, either directly or through a paired exchange.  It has been an omnipresent spectre in our home, influencing things like when we might take vacation, leaving town to do bloodwork, etc.  He was told just last week that he will be participating in a donation chain in another city in December.  I am feeling extremely upset and overwhelmed but also relieved that we will finally have this over with.

I, too, spoke with nephrologists and it did absolutely nothing to ease my mind.  In fact, it made me only more concerned because it became readily apparent that rigorous long-term studies of kidney donors have not been done.  Only recently have hospitals begun following kidney donors, and then only for two years.  One nephrologist told me there is no follow-up or good studies because nobody will pay for it.  And that is true, when you think about it.    Another surgeon told me that he didn't know of any negative consequences impacting any donor except for maybe high blood pressure later in life.  I asked about fatigue, and he told me he'd never heard about that being a problem.  And this is a doctor from a very well-known hospital!  No side effects ever!   So I do think that if your husband is concerned and skeptical, the "experts" aren't going to win him over.

Now, my spouse was going to do this regardless of my wishes because there was just too much familial pressure to resist.  Plus the disease is  a terrible one that he escaped by luck of the draw, and there is a certain amount of guilt that comes along with that.  I just came around to accepting and supporting this only a couple of years ago, when I could see that it was tearing him apart.   Also important for the change in my thinking is that our circumstances have changed since 15 years ago--our children are older, we are more financially secure, etc. which made it easier to take on the risk that he might not be able to do his demanding work for quite a while.

I can tell you firsthand that the entire process stinks for spouses.  It's like we don't exist.  The donor needs to have a caretaker for immediately after the surgery, but I don't think the hospitals really care who that is.  They ask the donors about their spouse during the psychological workup, but they don't ask to meet the spouses.  They don't care about what might be going on in the donor's life when they schedule the surgery, at least when they are paired (ex:  our surgery is scheduled for the week before Christmas).  And while the donor might be excited and nervous about their impending hospital adventure, all that is left for the spouse is to worry.  Worry, worry and more worry.  And figuring out logistics, which is hard to do because the transplant coordinators talk to the donors, not their spouses.  There is absolutely no outlet for spousal concerns and fears, which are all quickly dismissed by doctors and staff anyway.  Honestly, nothing is more infuriating.

But the fact that all of the long-term medical risks to donors might not have been disclosed is only half of the spousal objection. Even if the outcomes were much more dire, my spouse would still do it.   And if it were my brother or sister, I probably would too. In fact, I would much rather be donating myself than having my spouse do it.  At the end of the day, it is a fear that something bad, or even very bad, could result from a procedure that didn't have to be done and gives no direct benefit to the spouse. It sounds cold-blooded and selfish, but that is human psychology.  If you were donating to your own child, chances are your husband wouldn't be so opposed.  And if YOU needed a kidney and HE were a match, chances are he wouldn't hesitate to donate.  From your husband's perspective, these are completely different scenarios than your donating to your nephew, but they are helpful to put in perspective how we think about the risk.  Even if the risks are greater than those disclosed by the transplant center marketing materials, what changes in those scenarios are the benefits.  You and your child, big benefit.  Your nephew, not so much.  But the risks would be the same, and I always find it helpful when I am feeling a little upset to reflect on how I would view the risk if my spouse were donating to our child and try to carry that same perspective over to our actual situation.  It is hard to do, even after years of practice, but it can provide some relief.

If you were to speak with donor spouses, try to get people who donated in similar situations.  Many donors donate to/for their spouses--obviously those spouses wouldn't be the most helpful for your husband.  The most helpful would be speaking with spouses of donors who donated to friends, distant relatives and strangers, not children or parents or partners.  Remember, when all is said and done, the donor will get the fuzzy warm feelings that come with knowing you have made a huge difference in someone else's life.  But for a spouse--the best you can probably get is feeling exhausted but happy that nothing went terribly wrong, and maybe a little bit silly for having been so worried.

So applying what happened with my spouse to your situation, it would mean that you would have to explain to your husband that it is heartbreaking for you to see your nephew in these circumstances and you will always feel terrible for not at least trying to help out.  And you would say that you wouldn't be able to do this without his blessing, because you are going to need him after the operation.  So he has to be on board.  And that his fears are completely legitimate.  Even there's only a small risk, it is there, and it worries you that you might be doing something that could put your own family's future at risk.  So you can make it clear that your number one priority is your own family.  Once he feels empowered and heard, maybe his position might soften.

The other thing that might be helpful is for your husband to spend more time with your nephew, however you might arrange it.  Even though I always felt extreme sympathy for my in-laws, spending time with them would reinforce the dreadfulness of their condition.

Lastly, you might offer a compromise with your husband that you will only do the donation if you are a direct match.  This means no paired exchange programs.  The reasoning here is that anyone can be your nephew's partner for a paired donation--it doesn't need to be you.  But if you are compatible for a direct donation, then it makes all the more sense to go through with this.  All the risks are still there, but there is something about you being the special person giving to a family member that might ease his objections.

Best wishes to you and your husband on your decision.
« Last Edit: November 11, 2018, 08:48:15 PM by willow123 »

Offline Fr Pat

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Re: Family support
« Reply #3 on: November 11, 2018, 10:39:14 PM »
Dear Willow,
      In case you don't already know of it, there is a book called "The Reluctant Donor" by Suzanne F. Ruff in which she very honestly describes her struggles with the decision to donate a kidney, or not, to her sister, in the context of a family suffering from genetic kidney disease.
    Fr. Pat

Offline willow123

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Re: Family support
« Reply #4 on: November 13, 2018, 06:55:35 PM »
Thank you Fr Pat.  I read that book a couple of years ago.  It is very helpful.

Also, Nadine, I hope my outpouring above did not discourage you from donating to your nephew.  That was not my intention.  Rather, I was just trying to present the spouse's perspective with the hope it might help you reach an understanding with your husband.

Offline NadineP21

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Re: Family support
« Reply #5 on: May 04, 2019, 01:27:00 PM »
You might want to post this also at the FaceBook page of Living Donors on Line, as more donors check in there these days rather than here.
    best wishes,
      Fr. Pat
[/quoteFr Pat, thank you for your reply.  I have finally been approved.  Surgery is scheduled for 6/11.  Praying for a successful outcome for my nephew and me. 
Nadine

 

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