Need advice about my unreliable sisters-in-law as potential kidney donors

[Jean B.]

Hello all!  I'm new to this forum and am very glad to have found it!  Any advice about my problem would be very much appreciated.  So here it is:  my 58 year-old husband has been on peritoneal dialysis for IGA for two years.  He's done well on dialysis but is steadily fading.  I've been tested as a possible kidney donor and may be approved (I've several small health issues to address first), even though he and I don't have matched blood or tissue type.  I very much love my husband and want to help save his life.  We are cautiously optimistic and are keeping our fingers crossed for an eventual transplant surgery. 

My husband has two slightly younger sisters, both of whom are in seemingly fine health and with whom he's had good, if not especially close, relationships.  He's never expected either of his sisters to become donors and has let them know that fact.  The first sister has tentatively offered to become a donor but has taken no actions to do so.  Occasionally she expresses a very weak desire to begin the process but follows it up with "I've got to bring my son to his job interview next week," or "I've got to get ready for Christmas," and the like.  It would be easier all round if she just said "Sorry, but I just can't/won't be a donor," but she'll never give my husband a straightforward "no" answer.  She now mostly avoids contact with him, due to her embarrassment, I believe, at not being able to tell him that she doesn't want to be a donor. 

The second sister has offered to be a donor for the last several years but somehow never gets around to actually doing anything.  When my husband first began dialysis, she immediately and enthusiastically offered to be a donor, then fell out of contact for six months.  When she next talked to my husband, the subject was the distribution of their recently deceased mother's estate.  She also asked how my husband was feeling.  She didn't mention her earlier offer to become a donor.  Another six or so months passed, during which time she talked several times to my husband, mostly about the selling of the mother's house.  Again she she offered to become a donor, only to "disappear" once more until a year ago, when my husband was hospitalized for severe peritonitis.  The second sister and her family immediately came to visit him in the hospital (we live 200 miles apart), during time which she re-acknowledged that, as a sibling, she might be a better donor match for her brother than me or anyone else.  She again fervently expressed the wish to donate and promised to call the transplant coordinator as soon as she got home.  My husband and I heard nothing from her for nearly a year. 

My husband has been consistently stressed and upset by both of his sisters' cruelly unreliable behavior.  He doesn't expect them to become donors, but he does want straightforward, honest talk and actions from them.  He's frustrated that they haven't given him definite answers or followed through on their promises.  These women have repeatedly raised my husband's hopes, only to disappoint him again and again.  I've bitten my tongue and remained calm and polite to his sisters, but frankly, I'm longer willing to do so.  I want both women to leave my husband and me alone as we proceed with me as his dedicated donor or with a paired program exchange.  So ... should we tell his sisters we're not going to accept them as donors because they're undependable?  What if one of them would indeed be a better donor?  What if one of them makes another promise and it falls through once again?  My husband is deeply hurt by his sisters and doesn't have the strength to take any more of their push-pull flakiness and unreliability.  Every phone call from them sets him on edge.  I no longer trust either of these women but don't feel that I have the right to come between my husband and his sisters -- though every instinct in me to protect him tells me to do just that.  Does anyone have any thoughts on how to handle this delicate, difficult situation?  I would truly appreciate your advice!   

Jean B.

[Orchidlady]

Welcome Jean! 

We had a similar situation occur early on. When my husband was first diagnosed and was beginning the process of dialysis, he called his cousin, who he is close to, and lives in another state. The call, more than anything, was to let him know what had happened with my husband's health and the next step. His cousin, during that conversation, blurted out "I'll give you one of my kidneys!". However, in subsequent conversations, it never came up. When hubby was going through the list process, we talked about contacting his cousin, but there had been other conversations after that first one, and the subject never came up. We decided that it was a "heat of the moment" type of offer and felt uncomfortable bringing it up again. At least he offered - we received no such offer (spur of the moment or otherwise) from any of his brothers nor his sister.

You know your family better than anyone, but I bet the sisters' offers have good intentions but no follow through. What do you say to a family member who needs a kidney- "Don't look at me! I won't do it!"  I believe people make the offer sometimes to show their sympathy and to show they care, with no intention of actually proceeding down the donation path.  What they don't realize is how that affects an individual who needs that organ, by giving them false hope.  At this time, unless they truly show follow through, if it were me, I would just ignore what they say and not worry about it or bring it up. Don't allow their offhand offers of help to put you and your husband through an emotional roller coaster.

Best of luck to you and your husband.

[Karol]

You have to be very motivated to be a donor. The process with the transplant team is donor driven and any reluctance can result in a nonproductive evaluation.
Some people think a patient can stay on dialysis forever, that they are just fine. They don't see the bad days, the challenges, the side effects and the stress.
They might never take action. Or maybe they will. If I were you I would share your husband's story with all the friends and family you can. Enlist the sisters in getting the word out. You never know where the miracle will come from.
Best wishes to you both.

[sherri]

Jean,

Family donations come with a lot of raw emotions. As a sibling donor, I felt an enormous amount of pressure to donate to my brother (also with Iga) and I also perceived from my brother a sense of entitlement or expectation that it would be no problem for me. He had been instructed by his nephrologist to call his family and ask them for a kidney because he was in kidney failure. I believe his physician just assumed that since he had siblings it would be no problem for him to get that desperately needed organ. They told him, its an easy surgery, everyone can live with one kidney, no cost to the donor.... very matter of fact. (all of those giving out the advice appeared to have two kidneys, though.) I wasn't particularly close with my brother, who is 8 years my junior, before surgery nor am I close with him now. So having him ask for my organ was quite shocking. While it is beneficial to have share a genetic relationship with your donor it also may be very scary for the donor, particularly a sibling who may be afraid that they are at risk of the same if not similar health issue. I remember one of the nephrologists telling me that my brother and I were almost like twins (we are a 6/6 match). This was great for the recipient, but scared me because there is not enough research out there about Iga and familial relationships. I have 4 daughters, what would happen if one of them inherited this disease. I have another brother who also is under the care of a nephrologist so the family link scared me a lot.

It appears from your sister in laws actions that they are not totally on board with becoming a donor. The idea of saying that to their brother must be very painful. I suffered tremendous guilt, even though I did donate, that I gave a gift that did not come wrapped in selflessness and grace but rather ambivalence and hurt. I wish my brother and I would have had more open and honest conversations about donation before the surgery. It might have led to a more positive experience. It might also be good for your husband to be honest and say to his sisters, "if you don't want to do this, I understand. I am asking for you to risk your life to improve the quality of my life and that is scary". I wish my parents of my brother and his wife would have said that to me. It would have opened a much needed conversation. I probably would have donated anyway but the pressure would have been much less.

Continue to pursue the avenue of donation if you think this is what you would like to do. If the sisters then want to donate they will come forward. If they haven't pursued it then they probably don't want to do it or maybe they are waiting to see what you will do as much as you are waiting for them. Since you want to donate, they may be waiting to see if you are not a match or cannot donate and no other donors are available, then maybe they will reconsider. Sometimes, the reason family doesn't choose to donate is less about the kidney but about years of relationship baggage.

This proved to be a good life lesson for my kids. I remember during the testing process, one of my four daughters said to me, "mommy if you ever need a kidney, I'll give you one of mine (see family often says that like Orchid Lady said)". I said, " I would never take one from you, but if one of your sisters needed one, I hope that you would want to do that for them".


I hope you are able to move forward and your husband gets a donor soon, whether it be you or someone else. Thank you for sharing your perspective as a spouse. Everyone is affected when someone is in end stage renal failure. It also takes more than a kidney to help that person. I hope your sisters in law are able to step up to the plate to help out if you and your husband have surgery together.

All the best,

Sherri

[PastorJeff]

I would forget the sisters and test to become a donor in behalf of your husband through NKR.  (National Kidney Register) Then he would likely get a kidney, you would not have to be a match for him and the process would shorten from just waiting.  That would also avoid the family dynamics already at work and you would also be able to do some good for someone else too as well as part of a donor chain.

[Jean B.]

Thank all of you for your helpful thoughts and advice, which are so welcomed by me!  I do recognize that my husband's two sisters have no real intention of donating, otherwise they would have been began the donor process years ago.  As Orchid Lady remarks, their sporadic donor "offers" may be merely their way of showing sympathy -- though I've let them know, repeatedly, that that form of "sympathy" only dangles hope before an increasingly ill man and is actually cruel.  He still wants to believe that one of his sisters will come through for him.  I don't, and have seen from the beginning that they've offered only to assuage their guilt and to appear to be "nice."  Frankly, I want the women to stop their offers completely -- but they won't.  I'm at the point of throwing away our cell phones and getting an unlisted land line so that the sisters will leave us alone or will have to talk to me and not to my husband. 

I hope any people who consider donation and read this post realize that they should NOT offer to be donors unless their decision is genuine, well thought out, and discussed beforehand with their family members.  To do otherwise only frustrates and damages would-be recipients, who suffer the consequences of these feel-good "offers" that are made so that would-be donors feel better about themselves.  A straightforward, truthful answer is the only acceptable one. 

Again, I hope to be approved as a donor within several months.  Thanks again to all of you! 

Jean B.

[Mizchelle]

We're all called to do a job, not all of us have what it takes to get the job done.

[kdub]

Everyone is scared.  Donating a kidney is a big deal.  Its OK to be scared.

[poodles]

Hi Jean, glad you found your way here. It can be a great comfort to discuss your situation among a group who have been there already.

I was in the same situation as you. My husband has a large family who while he was in hospital getting his peritoneal dialysis tube inserted discussed among themselves donating a kidney. Every phone call was major emotional drama. The drama was causing to much stress & quietly started the donor testing process.

Shortly after a brother called to say he would be willing to donate, the family had decided he would the best candidate & how should he proceed. He asked how I knew & I said I'd already started the process as time was a real issue, I might not be the best candidate but we had to start somewhere. He then asked for a copy of my completed application form which I could not do as it had my complete medical history & told him where to get a form. We never heard anything further. I did not make my testing public and no one else came forward asking how to become a donor. We also did not directly ask for a donor waiting to see what would happen. I was quite surprised no one else came forward as you get the general impression that the people in your social & professional groups are a helpful caring bunch.

Nothing about these family or social dynamic situations is simple & it is impossible to predict or anticipate how anyone will react emotionally in stressful situations.

You have to make peace with yourself, proceed as best you can & do what you believe to be the right thing under the circumstances.

Luckily my kidney, now my husbands has worked smoothly so far and he is doing everything he can to make sure it stays that way.

Wishing you a smooth journey with your decision and please let us know how events progress.

 

[kdub]

Poodles, I just want to say that I think you are awesome.  I have a similar story to yours in some ways.  My brother needed a kidney, and my mom was a match.  So, it seemed like we were all set.  But, my mom decided she didn't want to give away her kidney.  I went and got tested, and was also a match.  I was surprised at how this all turned out, but what I'm trying to point out is this:  None of us is excited at the prospect of giving away a kidney.  None of us owes anyone else one of our organs.  There is no shame in not giving someone an organ.  I selfishly gave my brother a kidney, because I like hanging out with him.  It is a lot easier to just do what you can, and let other people worry about how they can or can not help.

P.S.  I have to admit, part of the reason I went through with it was that I like to think I'm the kind of guy who would do this, and I was called upon to prove it.

[Clark]

Dear Jean,

  Best wishes! So sorry to hear of your challenges. I offer you an aspect of my experience that I hope helps with perspective on contrast with yours. I donated to an acquaintance, the wife of one of my wife's co-workers. While we had met at company functions a couple of times, we didn't know each other well. She can't have suspected, when my wife and I offered to be donors for her, what an amazing educational journey we'd be taking together. It certainly surprised me, again and again. Because my preconceptions kept being disproved, and my vast ignorance revealed, and finally, the amazing lack of science in the peer reviewed literature, I was candid with the transplant team and my intended recipient and her family, that I was holding my thoughts and emotions on continuing to the next test, the next revelation, that next published paper, and that self honesty required that I could not know whether I'd finally consent on the morning of surgery. This was challenging for the transplant team, but also for her and her family. We got together much more often over the 19 months of testing and waiting until surgery and got to know each other better. Ten years later, we're good friends. Even so, this truth was brutal, and we couldn't seem to avoid talking about it every time we got together.

  I'm glad I said yes, on the day it mattered. It wasn't clear to me in advance that I would. My post surgical medical and personal history is enough to give one pause, though no clear causal relationship can be drawn to my more recent challenges from the donation surgery. It's like the argument about climate change and super storms: They're not proof, but they're not inconsistent with the expectations of the theory. Even so, it's been a boon for me, on balance, with the clarity of hindsight.

  My situation is not like yours, but the questioning of whether a particular person will or will not do something, anything, let alone become a living organ donor, is what you face no matter what. Failure to take the initial step to have a crossmatch done suggests they won't be going on to the more invasive tests, either, so I agree with your interpretation. We're here for you, whatever you decide your next steps are. Take care.

[JustAPyper]

I'd plan on proceeding with the paired exchange plan.  There is a lot of testing a donor has to do to be cleared to donate to someone and several things can disqualify someone from making a donation.  If the sister's won't even get tested, they probably won't follow through with making it to surgery to make a donation.

Sad, but you have to play the cards you are dealt.  I did a paired exchange for my wife because she had a high PRA (99) and was not a match for many many people who volunteered to get tested.  I can't imagine the pain of finding a direct donor match who wouldn't follow through.  Yikes.

Best of luck.

[audrey12]

My feeling is that, because both sisters were there when he was hospitalized and have kept in touch, that they will come through in other ways when the transplant happens.  I think you'll be able to call on them for support, especially if you both have surgery at the same time.  I would definitely keep them in the process and when they ask what they can do, tell them.  Help at home afterwards, cook some meals ahead of time, communicate with others who need to be kept informed of progress ("he's out of surgery and doing fine, here's where you can send cards/gifts"), etc.  My recipient's family was like that, didn't seem to hear him when the word got out he needed a kidney.  But they were there with flowers and dinner when we got out of the hospital.

[Ydh13]

Hi, it is unfortunate that they keep disappointing your husband that way, but I think they are just afraid of what is unknown. I say that because I struggled at first when I found out that my brother had acute kidney failure in both his kidneys. Of course I didn't make any offers at first because I was afraid, then I told my husband that I felt that I was a compatible donor and was going to be tested. I initiated the testing process without telling my brother what I was doing until the results came back.

When it was official I told my husband that I planned to donate to my brother, I had also by this time told my brother who could not believe it was true. During this time my husband continuously tried talking me out of donating causing me to delay and put off more tests. Finally I grew the nerve to go against everyone including my brother and have the nurse set up the surgery.  I am sorry they keep giving you hope and disappointing you but lack of education on donating and the after effects may be what the problem is. I hope they come through, and get over their fear, it is so worth it.