Spouse reactions to sibling kidney donations

[willow123]

Hi I am the spouse of an impending kidney donor who will be donating to his sister.  I would appreciate hearing about the experiences of whose spouse had a a tough time with this. Thank you!

[Scott337]

Willow,

While I've not donated to a family member, I did donate last October to a young man who lives near my home, but whom I had never met (Altruistic Donor).  Initially, when I and my wife spoke about my desire to be a donor, she indicated she understood and was somewhat ambivalent to the whole idea.  As I began testing, my belief is that she didn't think I would be found to be a compatible donor.  As time, and tests passed, the potential for me being a compatible match grew and this generated more apprehension on her part, although not a lot of conversation or even outward acknowledgement.  When it came time to watch the informational video(s) the transplant center provided and to read some of the accompanying material, she kept putting it off.  

One day I asked her to express what she thought about the entire process and the growing prospect that I would be cleared as a donor and with time-lines becoming shorter, we didn't have much time to get on the same page or iron out issues.  Finally, she told me she had concerns about my health, about the financial strain it would cause with both of us off work for some time, the issues with telling family (however I had made my wishes known that the donation would stay only within the immediate family), dealing with recuperation and potential for complications.  She was worried also about how this would disrupt several different family activities concerning our adult children (canceling plans to be at the hospital) and more.   It seemed one of her biggest issues was wondering WHY?  Why potentially compromise my own health for someone else I didn't know?  Why at this particular time in our lives?  Why was this so important to ME?  

After much conversation, we were able to focus on the donation process and all of the education and decision making that came along with it. She explained she wanted to feel she was part of the process rather than feeling like she was on the outside looking in.  We agreed that the donation could not take place without her support and acceptance, that it concerned both of us at every juncture (potential for adverse outcome, preparation, recovery, logistics, dealing with family, etc...)  It seemed once this process clearly involved both of us working together, she was much more acceptant.

One important aspect of this Willow, was our agreement that what WE were doing was important, that the focus should be on the recipient first and foremost and that we were willing to accept hat ever consequences came with it (positive or negative).  

I'm not certain this is what you were hoping to hear, but communication and support were the most important aspects of getting us through the process.  I hope you're able to come to terms with this as I'm certain your feelings and concerns are just as relevant and important as your husband's.  He will need your support and love to help guide him through the surgery and recovery.  I pray for you both and for your husband's sister and the best of all possible outcomes.  Please keep us updated on your progress.

Best wishes!

Scott  

[willow123]

Thank you for your reply.  I did not disclose a lot of the facts of his donation because they are all rather unusual, especially since they involve an inherited kidney disease.  But it is a relief to know that my feelings are shared by other spouses, that they are validated.  I feel there is no place for me in this official process, even though it is going to have a huge impact on our lives in the short term (and hopefully not in the long term).

Transplant doctors completely dismiss any possibility of long-term risk. I swear they make it sound like he's going for a manicure.  Transplant centers call and dictate dates to us for when we have to be where, and then I have to scramble and get people to watch our several children so I can fly to the transplant center with my husband.  The notion there is no pressure on him is ridiculous. How could there be no pressure? There is so much pressure, in fact, that I had to stop voicing concerns because it was too much for him to bear.

Anyway, thanks for allowing me to vent my frustrations. I do think there is a lot of room for improvement in how these are handled.

[shelby]

I am donating to a friend next week and my husband is having a very difficult time with it, for many of the same reasons outlined by Scott - concern about the potential impact on my health and how it might affect the quality of life of our family. We met with the psychiatrist early on who stated matter of factly that this was MY decision. I have never felt this way. In my view, it is a family decision as it definitely impacts the entire family. But the approach taken by the psychiatrist was certainly a negative in the whole process and did not set things off on the right foot. I'm not sure if this is a typical approach in other hospitals but I think somehow the perspective of the spouse should be brought in to the formal process.

[sherri]

Willow,

One part of informed consent for any surgery is non coercion. I believe that in family donation there can be an element of coercion. I certainly felt that way. I was the perfect match for my brother, his doctors expressed an interest in my kidney only since my sister was not the compatible blood type. In family donation there is always the inherited family risk. I remember thinking after one of the doctors said we were a perfect match, like almost twins, how much that scared me. Yes, we share the same genes for a successful transplant and we share the same genes to inherit or pass along to my 4 children. My youngest brother also is under the care of a nephrologist so kidney disease is in my family. I have given samples of blood, as well as most of my children to a researcher who is studying Iga nephropathy in families. The nephrologist who examined me at the transplant center  said if I hadn't exhibited symptoms as of now and was healthy then I probably don't have the disease.There is no way for him or anyone else to know what my children will inherit. There is no genetic test like in PKD so there is that feeling of the unknown.

The transplant center feels like they cover this issue about coercion by stating to the family donor that they can back out at any time and they will just let the recipient relative know that something came up medically.I had a long circular discussion with the psychologist about this flawed theory. I am going home with this family member, I will have to sit a family functions with them, I will always know that if my brother went on dialysis or did not get a good match it would be my fault. What a burden. I wanted the doctors to stop painting this surgery as "minimally invasive, go home after 2 days and everyone live fine with one kidney". I think that is what adds to the sense of entitlement that some family members feel to their relatives organs. I wish someone would have sat with all of us to discuss the ramifications of the surgery, how difficult of a decision this is and the anxiety that surrounds the unknown. Ultimately, the doctors and nurses just sit in front of a check list and tick off all the things on their list.

My husband understood how anxious I was about doing this and the uncomfortable position I was in. And believe me underneath he probably would have me not do it but the situation was that if I didn't and something happened I would be in such a bad place. Really a double edged sword. I am sorry that you as the spouse are not really considered in this decision and you feel that your concerns are being ignored. You may find it helpful to speak with a social worker or psychologist, either within or outside the center to have a safe place to voice your concerns. Your husband may feel like he is choosing his family obligation over his spousal obligations and that must be a hard place to be in. As the patient your husband can certainly bring this issue up with his social worker or psychologist and see if they can help you and him come together on this.

I agree there is lots of room for improvement on the psychosocial issues especially around family donations. So much emphasis is placed (or misplaced) on non directed or non related donors to protect their psychological needs. I wish more would be done for family donors. It seems as if the assumption is that every family member is the hospitals personal organ bank to get their patient off the waiting list. The non related donor does have more of an opportunity to back out and often does, especially if a spouse is not in agreement, and with much less consequence. The recipient family is often just thankful that someone "who didn't have to" offered to test. But they are usually less understanding when it comes to family because the doctor has told them, this is a minimally invasive surgery, no cost to your relative and they go home after 2 days in the hospital. I think my brother understands now why I felt the way I did (but we don't talk much about it just around it). At the time though, he was sick and all that was on his mind was getting a kidney and understandably so.

Feel free to vent. It is great to hear the side of the spouse of donor and so important to address these issues.

All the best,

Sherri

[Orchidlady]

I don't have much advice, other than to tell you your feelings are normal. It is quite interesting that my husband was against me donating for all the various reasons described - and he was going to get my kidney! It took me a full day of badgering, sulking, and logical conversation to finally convince him that it would be okay and to get him to agree to allow me to continue the testing process. He told me afterwards that, even up to the surgery, he still had a lot of trepidation about the whole thing, mainly because of his concern for me.

Sorry to hear you have to bear all this worry and anxiety. I think Sherri has given you excellent advice to talk with a social worker or your own choice of psychologist. There is a lot of worry and stress involved in any medical situation, let alone all the additional baggage that goes with donation.

Best of luck to you both!

[ohtobeahayes]

Hi, Willow!
If you would like, I could pass along your email to my friend Sheila. I started a kidney chain, and my kidney went to a man named Shannon, who is Sheila's brother. Their other brother passed away from kidney disease in 2004.  So both Sheldon and Shannon have kidney disease, and Sheila was cleared for donation. I'm sure that this worry is something she considered herself, and something that the doctors and she discussed.

This much I know- they will not allow anyone to donate who shows any indication of impending disease. They do not want to swap people...get one off the waiting list while adding a new one, you know?

Anyway, if you'd like to hear from someone who (it sounds like) faced this situation, please let me know and i'll send on your email address.

Take care!!! Thank you for loving your hubby so much!
Nicki

[Fr Pat]

Dear Willow,
     Hi. You might want to get hold of a book titled "The Reluctant Donor" by Suzanne F. Ruff. She gives a lot of detail about her own donation to her sister, but also speaks about the whole family. (Due to hereditary kidney disease her family has experienced several deaths and also several transplants, so they have faced this situation several times.) Their experiences might offer some helpful insights. Available at Amazon, barnes&Noble, etc.
   best wishes,
      Fr. Pat

[rdr321]

 Hi Willow.  I donated to a stanger whom I may never meet. My Wife theatend to leave me if I donated. I said OK. I did not argue.  She told me family and friends to get me not to do it. When I got my surgery date. She said she did not want to hear anything about it. The day I went to the hospital she came and staye dthe night 3 nights with me. I had a private room. I never argued with her. I felt that any problems I may experiance with my wife or family was small compared to the problems of someone needing a kidney. I am glad that I did not sway.  Now my wife is very happy at 7 weeks post op.
    Rick

[willow123]

A sincere thank you to everyone who took the time to reply.

My husband's experience is most like the one Sherri describes in that there is a history of kidney disease (which several family members have) and certain expectations that the healthy siblings will step up and donate when the time comes.  This is overlaid on top of a typical semi-dysfunctional family dynamic and some logistical problems. And then there are the complications that come from being a spouse and having a different set of concerns and priorities that aren't shared by anyone else in his family. 

In some ways, it feels like the issue of where to go for Thanksgiving dinner x 10,000.

And RDR321, you have an exceptionally accommodating spouse.  Treat her well!

[treehugger]

I don't have much advice, other than to tell you your feelings are normal. It is quite interesting that my husband was against me donating for all the various reasons described - and he was going to get my kidney!

Wow, Orchidlady, yours and my experiences were really similar, in a lot of ways. My husband and future recipient was also my biggest point of resistance. I knew from the start I wanted to donate and he was equally sure he didn't want me to, purely out of love-induced fear for my well being. I won.

To the OP, I am glad you are here to ask questions and talk about your very valid feelings. Best wishes on your and your husband's journey.

Kara

[lawphi]

My husband was not supportive of my donation at first, even though he received his kidney because I donated mine.  He got over it.    

I can't begin to comprehend the dynamics and pressure to donate to a family member.  My husband was an only child and my in laws were ABO incompatible. 

I have issues asking other people to donate when a spouse or a healthy/secure adult child have not attempted to find a paired exchange program to participate in first.  Especially if the couple has the resources to travel out of state to a different center.   

I had a little bit of resentment that another family member did not try to donate a kidney in my place after a match was found for my husband.  I would not have felt that way had my donation occurred at the same time of my husband's.  I had this deep fear that my husband would need another kidney in the near future and we might not have a suitable donor for an exchange at that time.  Sherri put up with me and I got over myself very quick. 
 
I was very hesitant to share these issues, but hope it helps people address concerns that are hard to articulate or feel comfortable expressing.   

For the record, I have spoken with my donor and his wife.  My kidney really likes him and has taken up golf!

[smudge]

Hi Willow

It's a tough one and I think the family dynamics make it worse.  Whilst my recipient is LIKE a sister to me, she isn't and therefore we are missing a lot of the baggage that comes with families.

I enjoyed reading "The Reluctant Donor" as mentioned above, it's a very honest story of sibling donation due to PKD and very powerful.

Good luck, and remember you are not alone