Future relationship with sibling who refuses to be tested

[LaurieCW]

I am really worried about the future relationship with my sister.  I am back on dialysis after 10 years being transplanted with a kidney donated by my darling husband.  When my husband stepped up and wanted to donate last time, it got my siblings off the hook of ever having to be tested.  This time, I'm back on dialysis and neithr my brother or sister has offered to be tested as a possible match.  My husband, unbeknownst to me, approached my sister and point blank asked her if she would be interested in being tested this time.  Her answer, "I'd really like to, but you know my daughter has high blood pressure so I really need to see what might happen with her in the future."  Ouch.  Yes, her 22 year old daughter does suffer from HBP, but she does not have kidney disease.  Sure, the possiblity is there that she could develop it later, but by the same token, ANYONE could develop it later!  I have it now, I need a kidney now.  Also, her daughter has a sister and a father and many cousins who could donate to her IF that ever happened.  Bottom line, I feel my sister is using this as an excuse, which is fine, but it really hurts like hell.  Now, I am worried that this will affect our relationship in the future.  I know she will feel guilty, awkward and weird around me now. I know that I will feel awkward and weird around her too.  I kind of wish my husband had never asked, but then again, he uncovered the elephant in the room.  I mean, if your siblings are not willing to help save your life, what more can one say?  Would like to hear ho others have handled this.  Thank you.

[cattlekid]

Laurie, I also have a sister who has not stepped forward to be tested.  She is fully aware of my need for a kidney.  There are just the two of us siblings in the family.

I have never outright asked her to be tested, nor will I.  I could not put that kind of pressure on her.  I would hope that she would come to this conclusion on her own, and at least step forward for testing.  However, if she doesn't, it is for reasons that only she will know and understand, because I sure don't.  Then again, she has a child and I do not. 

Will this affect my relationship with her?  We aren't super-close anyhow, so I can't really say.  Will it always be in the back of my mind?  Absolutely.

[okarol]

I am replying here as well, as you started a new thread.

Maybe I am wrong but I say it is unfair to ask or expect family members to donate. Or ask anyone, for that matter. If you share your story and they don't offer, then you have your answer. I would not waste another minute on trying to figure it out. There are other people willing to donate, but you have to reach out to find them.
As I said, my family has always been a disappointment as far as any kind of support, so I can't say I was surprised that none of them offered, but I thought perhaps my niece or nephew might, being closer in age to Jenna. But my brother and 2 sisters all have PKD so I imagine that their kids would expect to donate to their parents.
I really think it's best to forgive those who did not offer to donate and enlist them as your advocates. It may help get over some of the hurt, and repair relationships as they get involved in a campaign to help you find a donor. When asked how you're doing say "I need your help to get my story out there, so I can find a donor." If they don't help you then, well, that's pretty sad.
 

[jeannea]

I have a brother who just ignores the topic. He won't get tested and he won't tell me why. I suspect I know the reason but he would have to be honest and mature to talk about it. Not gonna happen. I mostly just ignore it. I know that he has some failings.

[coravh]

I have a friend who was told by her Mom that she wouldn't donate (afraid they would find cancer in her if she was tested) and she also told my friend not to ask her sister. Weird family. My friend has gotten over it and mellowed somewhat over the years, but not entirely. I had many friends tell me that they wanted to but couldn't because........ Kind of like saying "I hope someone else helps you because I'm not going to". It's hard, but eventually you will get a kidney. It may take a while and I am praying for you. Try not to obsess about this. Not everyone is kind to others and often they think only of themselves. You simply have to accept that they aren't what you hoped they would be and move on. You can't get mad at people for not living up to your expectations.

Sorry I can't be more help. I suspect most of us have been though this in one form or another. The hurt diminishes (kind of like losing a loved one) but never completely goes away. We  learn to survive - we are good at it.

Cora

[Deanne]

My situation is similar in some ways. I have three siblings, my transplant center ruled two of them out via phone calls, due to their own medical issues. The third one, my older sister, was confirmed as a match and started the testing process. She failed one of the blood tests by just a hair and the tx center said they would retest her if she lost 20 pounds. She told me she was committed to doing it. Then she laughed at me when I said I'd send her a leash so she could start walking her 10-pound dog for exercise. Where's that committment? She told my other sister she was going to start dieting as soon as she got on a better sleep schedule. She was changing hours at work and wasn't sleeping well. I suggested that if she started getting regular exercise and eating better, her sleeping habits would probably improve, too.

Then she pretty much disappeared for a year. She lives in MN and I live in Oregon. I suspect she's hiding from me. She did finally resurface last month, just long enough to tell me the transplant center isn't considering her as a potential donor anymore.

We aren't close/have never really been close. Maybe if we were close, I'd be hurt. Maybe if we were close, she'd have tried harder to help. In the end, I just had to keep reminding myself that I'm not "entitled" to her help. It's her body and her decision. Not everyone is cut out to be a donor and I didn't really expect her to carry through with it. It makes me sad sometimes to know that I could be recovered by now but "what ifs" won't get me anywhere, so I try to stop those thoughts.

[MooseMom]

Try not to obsess about this. Not everyone is kind to others and often they think only of themselves. You simply have to accept that they aren't what you hoped they would be and move on. You can't get mad at people for not living up to your expectations.

Sorry I can't be more help. I suspect most of us have been though this in one form or another. The hurt diminishes (kind of like losing a loved one) but never completely goes away. We  learn to survive - we are good at it.

Cora

While I agree with this in theory, in practice it is a very lofty goal which some of us never fully attain.  Of course you can get mad at people for not living up to your expectations!  I know I get mad at myself if I don't live up to my expectations of myself.  If you have high expectations of people, it means you trust them, and if you have low expectations of people, it means you don't. 

LaurieCW, you can "accept this and move on", but I think it would be dishonest of me to tell you that you will forgive and forget completely.  I think this will always color your relationship with your sister.  It ultimately comes down to what you want.  If you really want to completely repair your relationship with her, you will find a way to do so.  But it will take you some time to get over the hurt.  Wait until you feel you truly can forgive her.

If she feels weird, guilty and awkward around you, it's because she is embarrassed by the implications of her decision.  If she felt entirely justified, she would pick up the phone and call you and tell you exactly why she refuses to be tested.  She would not have used your husband as her own personal sounding board.  To be honest, though, if her daughter is only 22 and has bp issues, she may well be on her way to ESRD herself.  If I were that girl's mother, I'd be really worried.  She may have a very good reason to refuse to be tested to be your donor, but she should find the courage to tell you herself.

Her feelings are her responsibility, not yours.  If she feels awkward or weird, then it is up to her to find a way to cope or eliminate those feelings.  At the same time, the same can be said about you. 

May I ask, and you don't have to answer on this public forum, but do you feel some perhaps deeply buried need to punish her, to make her feel guilty?  The answer to that question may help you decide what to do next.  Good luck.

Oh..I LOVE Okarol's idea of maybe asking your sister to help you find a donor!  Okarol is the World's Best Advocate; she has worked tirelessly to find a donor for her daughter and was successful.  Those of us with ESRD are often too tired to advocate for ourselves, so having someone else to help us in that regard is a true blessing.  So, perhaps you can think of another way your sister can help you other than donation.

My own husband claimed he wanted to donate, but he would have had to lose an awful lot of weight.  I knew he would not be able to do so, never in a million years.  Eating is his way of dealing with stress, so I would have been stupid to think he'd stop eating like he does for any reason, for any body!  I trust his love but not his willpower!  LOL!  And there were times when I felt really angry at him when he'd pull out a plethora of TV snacks.  I knew THAT wasn't going to help him lose weight.  If anything, he's GAINED weight, probably due to the stress of both work and my CKD.  But he has helped me in so many other ways that are invaluable, so maybe there is a way your sister can help, too.  If so, your relationship with her may be saved.

[MooseMom]

Then she pretty much disappeared for a year. She lives in MN and I live in Oregon. I suspect she's hiding from me. She did finally resurface last month, just long enough to tell me the transplant center isn't considering her as a potential donor anymore.

Well, THERE's a big surprise. 

In the end, I just had to keep reminding myself that I'm not "entitled" to her help. It's her body and her decision. Not everyone is cut out to be a donor and I didn't really expect her to carry through with it. It makes me sad sometimes to know that I could be recovered by now but "what ifs" won't get me anywhere, so I try to stop those thoughts.

You are right.  None of us is "entitled" to anything, including bits and pieces of other people's bodies.  And it's true that donors are very special people, and most people are not special in that particular way.  But knowing all of that intellectually doesn't always keep us from feeling hurt.  And we're not always successful in trying to "stop those thoughts", although it is good for us to keep trying.

I'm really sorry, Deanne, that things didn't work out for your sister, but I can't help but feel that this is a blessing in disguise.  I don't trust your sister.

[rsudock]

I can sympathize with you about feeling disheartened about your sister not volunteering. I try to look at it like Okarol suggested not holding it against them and trying to look at it as "normal healthy" people don't see the need like we do and their mind set is different then ours. They can truly never understand how we suffer. I hold a lot of resentment against my mother because she dropped the ball in my eyes with my brother and I. She could have "saved" one of us and then saved my middle siblings kidney for the other one later in life...BUT a therapist once told me "Rachel how do you know your mom giving you a kidney would have prevented the situation your brother is in now?" I know she is right and I constantly have to remind myself that...it's hard, but true...even if my mom gave up a kidney doesn't mean it would have helped. It may have not lasted that long...

Now my poor sister looks at 2 of us needing kidneys and thinks, "Who should I save later in life?" Neil and I choose to love her and each other regardless of what the outcome...even if it means neither of us get her kidney. We love each other and have cried about kidney disease together...talking it out has made us closer...

Be open with your sister if that is the kind of relationship you have...

xo,
R

[Desert Dancer]

Sorry but I've got to be blunt here. It's HER kidney, not yours. You don't have a right to another person's organs just because you're related.

It's not your sister's fault you're upset. It's your own expectations minus the reality, the reality being that even if she does want to donate to you she won't, and it's unfair to be upset with her. Not everyone has the same notions of what love requires.

Do you really expect her to choose you over her own child? Yes, you need one NOW but high blood pressure is one of the major causes of kidney failure. If you were in her shoes wouldn't you want to save your kidney for your child if you thought they might need one? That's the most legitimate excuse for NOT donating I can think of.

I'm sorry you're back on dialysis, btw. That's got to suck after being transplanted for ten years and I understand your acute disappointment that your sister doesn't have your back the way you assumed she did. I'd say to process the new reality, put it behind you and don't let it affect your relationship with her. You may find at the end of things that you regret creating a grudge that didn't have to exist.

[MooseMom]

Wise words from both rsudock and Desert Dancer, as always.

[cariad]

I agree with Desert Dancer - your sister has an excellent reason to hang on to her kidney. High blood pressure is nothing to scoff at, and that is her child. It is often said that forgiving is something you do for yourself, not anyone else. Carrying a grudge saps precious energy and just makes one feel melancholy. If you really are worried about your future relationship with her, then tell her you understand and that it's OK. Absolutely ask her to become an advocate for you, ask for other help you might need, too, but try not to view it as an entitlement.

I never asked any of my five siblings. I did not want a kidney from them. We are not close and if one of them had been willing to donate and I had been willing to accept it, THAT would have been the definition of weird and awkward to me. I can understand that it hurts lots in your case, but with a history of high blood pressure in her family, the transplant team may have rejected her anyway.

[gothiclovemonkey]

I feel for both sides here actually.

My brother once told me, years before my kidneys actually even failed me, that If I needed a kidney, he would rather watch me die, than give me one...
He doesnt remember saying this, but his wife does... He was apparently drunk.
That hurt to my core... And like I said, this was years before I even knew I had an actually problem. (i was told it could be possible years and years down the road but nothing difinitive)
When I went to get on the list, he said I dont think they will let me, and he was right, because of family history of heart disease...

On the other hand, I dont think I would want his anyway. something for him to hang over me forever... and my dad is the only person, that im aware of, who wanted to get tested, but hes not nearly healthy enough.
i have a rather large family, and some of them dont even know i have kidney failure... which is kind of sad, ive had it for almost 6 years now...
the ones who know, dont ever mention it, and often plan things on my dialysis days... that also hurts a little bit.

I agree with a lot here, that it is their life, and especially your sister wanting to make sure she has one if her daughter needs it. i honestly think id feel the same way about my son... we are adults.... i cant imagine being any younger and going through this.... 20 was bad enough.

[Lexxtech18]

I know your pain!! My own father would not be tested. Both of my HALF sisters stepped up to be tested, one I have not even seen in 20+ years but we keep in contact on Facebook. A couple of my friends and even my step-father all wanted to be tested! Most of my family has asked to be tested. But my own father, the man that helped make me, my flesh and blood would not be tested, knowing he is the same blood type as me, mind you, because he couldn't be bothered to take a few weeks off of work for post surgery recovery. How do you like that? Selfish. Totally selfish. But you know what? I wouldn't want his kidney anyway. I wouldn't want to be in debted to him for the rest of my life. That man has done hardly anything for me in 25 years of life. Why start now?

[amanda100wilson]

I agree with Cariad and Desertdancer.  You cannot hold it against someone because they do not want to give,you part of their body and you really need to respect that fact.  I know that it hurts.  My brother was tested to donate directly to me, he knows about paired donation because when my husband could not do the paired donation that was planned, I mentioned it to my brother and nothing has come of that.  If you have previously been close to,your sister, then I think that it would be a terrible shame to damage that relationship. 

I also think that your sister has a very valid reason for not donating her kidney.  I know for a fact that if was healthy, and my son had high blood pressure, I would not give up a kidney for anyone else.  Her daughter is very young to be suffering from high BP so there is a very real chance that her kidneys may be compromised. 

As an aside, what caused your kidney failure?  Since your niece is suffering from high BP at such a young age, is there any family link that should be looked into, to help safeguard other family members?

[Annig83]

I agree with everyone on here... you can't dwell on it.  I am an only child, my parents are over 65 and have HBP and autoimmune issues, my boyfriend has kidney stones.  They all said they would donate if they could... no one else in my family (my cousins mostly) have even mentioned or considered donating, but they do offer me support... and at first I was a bit upset because I thought for sure that they would want to donate....but it got me thinking and realizing, they are younger than I am, don't have children, or are married, they have lives to live too, and I understand that.  Would it have been nice for them to get tested?  Sure!  But I don't hold it against them for wanting to live their lives too.

You wouldn't want a kidney from someone who would end up resenting the fact that they donated.  No one wants that hanging over their head.  I'm sure that the right person will come along soon!  That's what I'm hoping for! 

[CebuShan]

I do agree that you should not hold it against your sister for not wanting to donate.
I was diagnosed in 2009, started D in 2010 and didn't even begin the process for getting tested to get on the list until 2011! That's because I was freaked out by the thought of having someone else's body part in me! How weird is that!   

[Simon Dog]

Not signed up on the list yet, but received an "offer to ask" from a sibling if I choose that route.   A very good friend offered to spearhead an internet drive "since you read about donors all the time, someone in our social community may want to help.".    I explained that was an excellent idea, however, I knew he had too much character to ever ask others to do what he would not do himself, and gave him my neph's contact info.

Funny thing - he has never brought up the subject again.

[Emerson Burick]

I mean, if your siblings are not willing to help save your life, what more can one say?

Depends why your kidneys failed in the first place. My family has hereditary kidney issues. Mom's went first, then my brother. I never considered getting tested and they never considered asking because if I were to have the same issue, I wouldn't have been dong anyone any favors. Of course mine went too.

It also depends on your relationship with your sibling. In my experience, sibling relationships are overrated. Just because you share the same parents doesn't mean that you have anything in common or even like each other. If my brother had asked me, I would have either refused outright or would have ensured that the transplant coordinator said that I was incompatible, depending on how much of a confrontation I felt like having.

[The Noob]

this is just my own personal observations, from only what we have been through.

the first reaction to DH's plight, from HIS family..was FEAR. (they they might be asked for anything in any way).
the next was GUILT. (see he above)
after that it was BLAME. (pass the buck, make a fight, find some reason..hence excuse onesself from any feelings of guilt or responsibility).

NOT saying at all that i don't agree with all sides of this. its alot to ask someone to donate. its a long process and there are no guarantees. for either side.

On the OTHER HAND..My children, not blood related to my DH, have stepped into to help with no prompt. MY daughter and her husband were tested, were quite eager, and they were both a match.

as we were all finishing the living donor stuff, the transplant clinic suspended their living donor program, because of a kidney being throw in the trash.

i had some misgivings about my son in law donating, because DH is generally difficult to non-conpliant, still smokes 2 packs a day, etc. i felt if a young healthy person were willing and eager to give up one his major organs, forever, DH could likewise be inclined to take care of himself as best he can.

i've been reading some on the insurance posts, and my my my..there are some vicious peeps here.

i do enjoy Simons posts, he is so witty!

[thegrammalady]

it's kind of funny. i have 3 children, all with their hands in the air and i've told them no. they all think i'm nuts. my kidneys failed because of high blood pressure my sister on the other hand has reduced function because of a medication she was given after a surgery last year. some of the function has come back but it's still frighteningly low. in the last 7 years she has never brought up the subject of donation but then she knows i'm not even on the list. if she had offered and donated when i was first diagnosed she be in a real bind now. i have no problem with it at all.

[Wenchie58]

  Although I understand the fear and hurt when this happens I could not and did not hold anything against my siblings (there are 7 of them, yes 7) when none of them stepped forward to offer to be tested.  Everyone has to make that decision for themselves with their own heart and mind.  They, as siblings, don't owe us anything, they have their own lives to live and choices to make.  I have often thought to myself....when waiting on the list...I wonder why?  Maybe they don't give a rats ass if I live or die.  I was wrong, they are there for me...carted me to treatments for months post transplant, cleaned my house, brought me food..you name it.  They gave what they were able to give...and I love them all the more for it.

[DialysisGoneFOREVER]

If they're not willing to help screw 'em!