I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MooseMom on November 04, 2010, 01:16:20 PM
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What a strange journey this is. "Rollercoaster ride" is a well-worn phrase, but it comes pretty close to my own experiences of late. You all may remember my tale of being offered a cadaveric kidney from a donor who was defined "high risk" in that he lived with his HIV positive girlfriend. That was a low point. Even though I really couldn't accept that kidney, it felt terrible having to say no to a chance to avoid dialysis altogether.
I have another story of another offer that illustrates a "high" point. I had my annual check up today with my gyn. I don't know her personally, but she is nice and smart and approachable and competent. She asked me how things were going since my last check up. I've been a little down in the dumps lately, and I didn't want to launch into the whole kidney saga, but she's my doctor and I figured she needed to know what has been happening in the past year, so I told her that I was now on the kidney transplant waiting list and that it had been a hard year. She asked, "You need a kidney?" I replied that, sadly, yes, I did, and that I had worked hard to get on the transplant list, that my kidneys were failing and that I can't really do anything to stop the process, and...well, you all know how it goes. She immediately said, "I'll give you a kidney!" I frankly was stunned, so I don't remember what I said next...something along the lines of, "I'm stunned." She said that it was a "no-brainer...I have two kidneys that work, and you can have one of them." As she is a physician, she understands what surgery means and she knows what kidney failure can do to you. I told her that I'd email her the transplant coordinator's contact details and would leave the two of them to discuss the matter.
I remembered various threads on this subject in IHD, so I was able to make some sort of coherent response. I told her that yes, she should think about it carefully and discuss it with her family, but that no matter what she ultimately decided, I was very grateful that she would even consider it. We talked about the feeling you get when you literally save someone's life. She has experienced that feeling to some degree in the past through her work, obviously, but knowing that she has a medical background makes me especially appreciative because she has a good idea of what she is offering.
Anyway, I just want to thank everyone who has ever posted about this for giving me some insight on how to say "thank you" to someone who has offered. As much as I would love to have a new kidney, at this moment, all I can think about is the offer itself and how it makes me feel. I'm just...well, shocked and surprised.
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I can so relate to this. There was a young Mom at church (I knew her parents) and she came up to me one day after a dinner at church and simply said "I want to give you a kidney". Stunned is the right word. That was 5 years ago and she didn't match (now we know why) but we have become friends and I have told her many times that just her willingness to give was a wonderful gift to me. It renews your faith in those around you. I'll be crossing fingers and toes that this can happen for you. I was told a long time ago to freely talk about needing a kidney because you never know who your hero might be. :2thumbsup;
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I've had people tell me, "hey, I"ll give you a kidney" but that's as far as it ever got. At the time I didn't want anyone to give me a kidney. When I got to a point where I'd cut the kidney out of them myself if they let me, and mention that they said it, they back away slowly without making eye contact...
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wow MM that's amazing.. and I don't think she wouldn't make that offer unless she was serious because she of all people would know exactly what that would mean to you. incredible. I hope this pans out for you, but whatever happens the offer and consideration is something so very special.
:grouphug; :grouphug; :grouphug; :grouphug;
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Wow, MM what a wonderful blessing to have just dropped into your life like that. I so hope all goes well and this way you wont have to go on D at all. Best wishes to you. :yahoo;
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There really are many amazing people in the world and I'm so glad that you've just had this encounter with one of them. Whether it all comes to pass or not, she's wonderful. :grouphug;
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I try to be a good person, but I don't always succeed. For years, I regularly gave blood and would regularly entertain myself with fantasies of having saved a life as a result of my saintly sacrifice. I had a work colleague who was on Britain's bone marrow donation registry, and I had the paperwork to do the same when I found out I was pregnant. Right after I had my baby, I was diagnosed with fsgs, so donation of any sort was suddenly impossible for me. I was really disappointed. Donating was something that I never thought twice about.
I've made the classic big mistake of thinking to myself, "Gee, if I would donate, then why won't anyone donate to me?" It's a selfish and myopic query because it is a mistake to judge others using yourself as a benchmark. There are many people more altruistic than myself, and many less so, and I'm just there in the middle, rather ordinary and average. I try very hard not to get into that "if I can do it, so can you" mindset because it is basically untrue. But occasionally I would think just that, and the result has been resentment, anger and jealousy. I saw a dance troupe perform not long ago, and instead of being able to enjoy them, I found myself resenting the fact that they were healthy and I was not. I recognized this in myself immediately; it was very unflattering, but it was the truth, and I never back down from the truth. I often beat up myself with it.
This resentment has been a source of great unhappiness for me lately, magnified by the fact that no one in my family (who are well versed with dialysis) has thought to at least offer to be tested. And that's why this offer by a complete stranger has left me astonished. As I was telling my husband about it, he said to me, "This is what you would have done. If you had heard that someone needed a kidney, you would have offered." And I realized he was right. As my gyn was talking to me, telling me why she would like to donate, I could hear myself. That doesn't make me a saint, but it does ease the resentment a hundredfold. I may not get a kidney, but I got something else that has proven to be extraordinarily important, and that is this sense that there ARE really good and compassionate people out there. Where I live, I have no family and no close friends; I had no real hope that anyone would offer to be tested. Why would they? But someone has. It makes me want to cry.
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Your post made me cry. I remember every single person who offered for Jenna. The first 4 were acquaintances, the next 2 were extended family and the last 4 were strangers. Each person's offer was a surprise. The emotions were up and down, first with the offer, then the reality of not matching.
As someone said before, the greatest gift is hope. Offers remind us that there are good folks out there and the world is not going to hell.
:cuddle;
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This is spectacular news, MM, and I really hope it works out for you! See, sometimes those annoying optimists have a point! :)
I agree with Richard ( :secret; Hi, sweet Richard! I keep meaning to PM you, btw! Our highly secret affair is still on, right?! Oh, I'm not typing anything Gwyn, now go away! :rofl;) I would find it highly unlikely that a doctor of all people would offer without being serious about it. I do think most doctors outside of transplant can be utterly clueless about what it entails, so I would make no assumptions that she understands much of anything about the process, but I think it is safe to assume she does know the many risks that she tacitly accepts with this offer. She does know your blood group and her own, right?
I have a great feeling about this and I am diverting any extra luck that I may have coming to me straight over to you! Updates please, as soon as they come in!!!
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Im so happy for you, for just even the offer.. How truly wonderful that must feel. I feel your heart, and you are a precious person MooseMom. You do deserve this, and ya know what, this has got me to thinking. Though hubby is not ok'ed for a transplant, (cant think of the correct word there) why couldnt i, in time, offer my kidney to someone else. Through all this i honestly never even questioned it..(only to hubby of course). It would be tough as we are going to be doing home dialysis and i am the 'nurse' who will be doing it for him (his vision is not good enough) i wonder how that would work with me out of commision for that time... Well, at least it's got me thinking...
All the best..
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What I meant to say, cariad, is that she probably has a greater understanding of just what the kidneys do and what their failure truly means. She happened to train at the hospital that is my transplant center (Rush); she told me that she would often get called to come to an emergency pap smear on women who had just gotten the call and were on their way in for their new kidney. But you are right...just because she is a doctor doesn't mean she knows much about the process.
Boswife, it may be that one day you'll be able to be a donor, and how wonderful that you would even consider it. But right now, you are doing sterling work in caring for your hubby. Perhaps you could be a blood donor? That could save someone's life even thought it is not as "dramatic"...it's still so important. But you have enough on your plate for the time being!
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I have a great feeling about this and I am diverting any extra luck that I may have coming to me straight over to you! Updates please, as soon as they come in!!!
Cariad said that about me about a year ago, so this may not be as good a thing as it sounds!!! :rofl; :rofl; :rofl; :rofl;
(yes darling, our super secret affair is still on and I eargerly await your next PM... :-* >:D)
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I fully understand what MM was saying about being a donor if we could. When my mom was first on D all I could think of was she can have one of mine...but of course that was never an option as I have PKD as well. But I had expected my brother to offer, and he never did. My mom used to say that live donation was to risky and that she would not let my brother donate anyways so it was a non-issue.
I often wonder if that was her way of letting him off the hook? I know at one point towards the end on mom's life, after many bottles of wine, my brother mentioned that he was stuck, he could donate to mom and be forced to watch me die or vice verse.....but with all the D and transplant conversations that occurred in this family surely he knew that the chances that he would have been a match for both of us was VERY slim....now that I need a donor, he has never even brought the subject up again??? Disappointing to say the least
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Oh Scarlet, that's very interesting. I can't help but wonder if your mother masked her disappointment by declaring that she wouldn't allow her son to be a donor; I suspect you may well be right in that this was how she let your brother off the hook. Hmmm...good question.
As for your brother saying he was "stuck", I'm not sure I understand what he was trying to say. Is he saying that he didn't want to have to choose to which one of you to donate? He could have been tested and have let the doctors tell you all which one of you, you or your mom, was a better match. Did he ever get tested? Or is he just making up excuses?
I can understand your disappointment. I suspect we all may have felt the same thing at one time or another.
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Blokey's brother has never offered, and I know that deep down Blokey feels a little hurt by that. He would never (ever) let his brother know that, of course but I think it pulls at his heart strings occasionally.
MooseMom, that's so lovely of your gyn.
;D
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Blokey's brother has never offered, and I know that deep down Blokey feels a little hurt by that. He would never (ever) let his brother know that, of course but I think it pulls at his heart strings occasionally.
MooseMom, that's so lovely of your gyn.
;D
Has Blokey ever talked to you about how he feels regarding his brother not offering? Do either you or Blokey have any idea why he hasn't offered?
I've felt hurt that none of my family (cousins) have offered, but I have a suspicion that one of my cousins might have an alcohol problem. She might not want to be the subject of pretty intense scrutiny, which is what occurs when you're offering to be a donor. I guess there's not too much you can keep a secret. People might have all manner of secrets they want to keep hidden.
And it is nice of my gyn! I may not hear another word about it, but I really do feel that this was a genuine offer. She may have decided by now that it is not the right thing for her to do right now, but, well, you get gut feelings about things, and my gut tells me that the offer was heartfelt, and that in and of itself makes me feel good. But the odds of getting just ONE offer and having that ONE offer result in a new kidney are extraordinarily slim, but I can live with that. Just talking to her...just seeing her talk so happily about the possibility of saving someone's life...well, it was fun. If it wasn't sincere, then she deserves an Oscar!
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My daughter offered me one of her kidneys when I was diagnosed, I was so proud of her...It gave me such a boost to see such love.
But I said "No thank you, love" because I'm 75 and she is 50 and still has her life before her. I also worried that what I have might be genetic (my diabetes was) and she might need them .
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I think that you hit it right on the head MM, I think that my mom let my brother off the hook, but I can only imagine how hurt she must have felt. I tried to talk to her about it several times but as it only seemed to cause her more pain I let it drop. As far as I know my brother has never even brought up the subject with a doctor. Also as I have always found it hard to be confrontational, so I tend to back away from topics that I think will cause others pain, in short I am a woos and it drives me nuts :banghead;
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I think that you hit it right on the head MM, I think that my mom let my brother off the hook, but I can only imagine how hurt she must have felt. I tried to talk to her about it several times but as it only seemed to cause her more pain I let it drop. As far as I know my brother has never even brought up the subject with a doctor. Also as I have always found it hard to be confrontational, so I tend to back away from topics that I think will cause others pain, in short I am a woos and it drives me nuts :banghead;
You can't help how you are hardwired. If you don't like confrontation, then you don't like confrontation; there is nothing wrong with that. We need the diplomats of the world, too. I imagine you have enough on your plate without creating further discomfort. Sometimes it's just not worth it, you know?
I think your mom was probably protecting herself, too. Imagine knowing your own brother/sister/child/spouse won't help save your life; it is hard to live with that sort of disappointment, so we make excuses to protect our own hearts. I know I've done it, and if that's what it takes to get you through the day, then it may well be worth it. They don't call it the "brutal truth" for nothing. Sometimes a little veil over our eyes can be a good thing.
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I have a great feeling about this and I am diverting any extra luck that I may have coming to me straight over to you! Updates please, as soon as they come in!!!
Cariad said that about me about a year ago, so this may not be as good a thing as it sounds!!! :rofl; :rofl; :rofl; :rofl;
(yes darling, our super secret affair is still on and I eargerly await your next PM... :-* >:D)
OK, so I've been really short of luck this past year! Sure, rub it in!! :rofl; :rofl; :rofl;
When my older son was five, I was trying to explain my situation to him and that his father wanted to donate to me. Aidan is afraid of all things medical. I told him that he could not donate to me (which was true, and not just because of his age) and he brightened up and said "Cause kids need their knees!" Where did I lose him in my explanation?! It reminded me of my time in hospital, the night before my first transplant my mother was studying a medical diagram of a kidney and when I saw the picture I thought the shape looked really familiar and asked my mother "Are kidneys in your ears?" I had a feeling it was a silly question, but I wanted to be sure.
Aidan has since told me that he would donate to his brother if he ever needed it, which I thought was really lovely of him. He cries at the mere mention of a vaccine jab.
Still wishing you luck, MM, even if I have little spare. :)
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My mother has always said that my little brother was a "last resort" and I think that's made him feel a bit like a spare tire. It's there when you need it, but for the most part, it's just taking up space. He's never been tested, mostly because he was too young the first two times I was on dialysis. I'd like him to get tested, just because I'm curious to see if he would be a match, but I think that's as far as I'd ask him to go. Any further would be his own choice.
Mom's been saying that she was going to ask him to be tested, but she hasn't. I think she's a little afraid to. We are her only children, and she and Dad worked very hard to get us. She was told after I was born that she shouldn't have been able to have any children. She conceived twice after that, miscarrying once. My mom is a very determined woman. *L* I think that the prospect of both of us being in the hospital and being operated on at the same time scares the heck out of her, but she won't admit it.
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That is a lovely gesture by your doctor!
I take the view that no one has the morale imperative to offer a kidney or indeed go through with one. It is certainly an individuals right to make decisions about their own body even if sometimes they are mis-informed. It is a serious personal decision and I cannot fault anyone who cannot bring himself/herself to donate.
On a more positive note we have had two donations at our hospital that have worked: Chris is a 44 year old nurse who has recently had a kidney transplant. One of his mates, without ever saying a word to Chris, went to the hospital to see if he could be a match for Chris. Despite all the odds, he was and both he and Chris are doing well. Does restore your faith in people.
A second donation, also successful, came to Jackie in our unit. She was offered a kidney by an -ex-husband (20 years divorces). Again despite the odds he was a match.
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I take the view that no one has the morale imperative to offer a kidney or indeed go through with one. It is certainly an individuals right to make decisions about their own body even if sometimes they are mis-informed. It is a serious personal decision and I cannot fault anyone who cannot bring himself/herself to donate.
Well, then you are a better person than me. Is there NEVER a morale imperative to donate? If your child or your spouse or someone you love is enduring dialysis, don't you think there is some sort of duty to at least inform yourself of their disease, their treatment and the possibility of donation? If your partner was suffering from the effects of dialysis and ESRD, and you were strong and healthy enough to at least consider testing, could you seriously stand by and watch the suffering continue, knowing that you could quite literally save his life? Yes, donation is a serious personal decision, but so is standing by and allowing the suffering to go on and on and on when you KNOW you could possibly end it. Your personal decision becomes inertia, and while it is entirely within your rights to so decide, you also get to live with the consequences with that decision.
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I also agree that there is no moral imperative to donate a kidney.
I feel this way because giving a kidney is a major operation that can have repercussions on the life of the donor. I've been through ups and downs with people who say they'll give you a kidney and back out, or say it and are not serious. I feel like its a lot to ask from someone and I want them to be 100% sure of their decision.
I hope everything goes though for you, and a gyn would know what's involved with the surgery. Good luck!
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I never thought it was anyone's duty to donate to me. I was fortunate to have many people be tested, but I don't know how I would have handled it if they did match. I never thought about it seriously until I was diagnosed. Like most people, I said I wanted to be a donor after death. But I didn't go out of my way to do anything while living. I am a very "giving" person. Ask me to do anything and I will move mountains to do it. I have been volunteering since I was a teen. Giving comes easy. But an organ wasn't in my scope. I have learned so much in 8 years and that is why I volunteer with the Kidney Foundation and be a part of IHD. Information and knowledge is the key. But no one "owes" me an organ just because I need it and they happen to know me. (But I don't like people to give me anything! It really is easier to give than receive!!)
I am so excited for the offer your Dr. gave you. Being in her position, she knows the risks and the outcomes. She is a special person and maybe your real life hero :2thumbsup; Keep us updated as you hear things. A living donor is an amazing thing. Wishing and hoping for a wonderful outcome. :cuddle;
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Just to be clear...I don't think anyone "owes" me anything. But I would like to turn this question around a bit.
Let's take donating to strangers off the table just to make the discussion a bit clearer. If someone you loved needed a kidney, and you watched that person struggle day after day, year after year with the affects of ESRD, and you believed that your health was good and that you could possibly be a donor for that person, would you really feel absolutely nothing? Would you really tell yourself that you had no moral duty to even be tested? Are you really saying that this person's suffering THAT YOU MIGHT POSSIBLY BE ABLE TO END would not spark some small sense of moral obligation?
Information and knowledge may be A key, but you can be a dialysis expert and still desperately need a kidney.
I guess the bottom line is that if a family member or someone who meant a lot to me needed a kidney and I was able to give one, and I didn't do it, I don't think I'd be able to live with myself. One could claim that I am biased, but right now I am still pre-dialysis and am OK...I'm not suffering.
I guess my real question is not so much about the consequences of donation (you can read up on that topic online...there's tons of information about that), rather, the consequences of NOT. How does it affect people who CAN donate to a loved one but who choose not to? Are there consequences to THAT decision, and if so, what are they?
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I agree with MM, I can nut understand any family members that watch "one of their own" go thought this and not at least consider being tested....as mentioned before I am 3rd generation PKD, and so far out of 4 previous family members with PKD it has claimed the lives of 3 of them!! 3 of my family members, one of which my own mother, are dead before the age of 65, without even ONE other family member even getting a blood test to see if they could help out.......to say that i find this sad is an understatement to say the least.
And now here I am joining the family club, and in one regard I am glad that my mother is no longer alive to see that my brother will not step up for me either.
I thank god that we never told my grandfather, the first one with this in the family, that any of the rest of us have PKD. He died very happy that the children and grand children were free from the life that he had.
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Scarlet, that's beyond my comprehension. My family does have some knowledge of kidney failure and dialysis, but not like yours. I just can't imagine seeing so many family members suffer from one disease and not doing anything about it. How do you face these people, or, rather, how can they face you? If I were them, I'd be really embarrassed. Again, chosing NOT to think about being tested is still a choice..by not deciding, you've still made a decision. I really don't understand it, and I'm sure you don't, either. It's even more galling to not have the chance to understand since your family don't seem to even want to talk about it.
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MM, as for how I face them or how do they face me....well we don't. I have not spoken to any of my mom's family since talking to my uncle the day after his transplant. When he said that he was just glad that this was all over and the family could finally "leave this nightmare behind them"....ah....remember me......your niece.....still got it!!! And I have never heard from them since...
As for my brother, I just try not to think about it, and I am sure you know who well that works. :'(
I don't know what to do really....I grew up with just the 4 of us moving all over the country and had this idea that my family was so close.....guess its time I grew up.
This may be one of the reasons that I am having a hard time following up with Russ(bff) on his offer of a kidney. Russ has said he was going to get tested....I just could not believe it, then we did not talk for a few months (our friendship is like that) and then he calls and says that he o+ and asks what the next step is. The doctors tell me that I have to wait till I drop below 20GFR and then we can do the rest of the testing. I have not called Russ back....
It is like I am testing him, and I hate myself for even thinking like that! Feeling like "If I do not follow up with Russ will he follow up with me??" That is the most juvenile thing I have ever heard, and it is coming from me ME!!
I know that I have 'issues" or as Russ is found of saying "you have AIR Canada's worth of baggage!!" which I have to admit is somewhat true.. Over the last 10 years Russ has always been there to kick my A$$ as needed, so I have no idea why I keep doing this?
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Scarlet, I've been mulling over your post for a little while now, and a couple of things occur to me. Pardon me if this ends of reading like some "stream of consciousness" thing.
You must feel a huge amount of hurt from your mom's family. For your uncle to say that this "nightmare was behind them" is appallingly cruel. No wonder you've not spoken with them since. It's probably wise not to have contact with them at this moment in time. If they were supportive of you, they would have reached out to you. They say that blood is thicker than water, but that's just not always true. Your own family can be just as cruel and neglectful as the stranger down the road. Sure, you can try to just not think about it, and that tactic may eventually work. But your present renal condition is a constant reminder of your family's neglect. All you can do is try to shield yourself from it as much as you can, and if that means continuing to have no contact with them, then so be it.
As far as Russ goes, yes, I do think you are testing him, and I can understand why. We don't always behave like adults. I don't know if "testing him" is "juvenile", but it is counterproductive. You've been betrayed by your family, and I suspect that you are afraid that Russ may let you down in a similar way...you're just waiting for him to be just like them. And you are giving him every opportunity to be just like them so that you can prove to the world that you're right. And that might not be a huge problem right now since you're GFR is still above 20, but once it dips below that benchmark, then the situation becomes glaringly different. Preemptive transplant is the best treatment for renal failure (for most people)...that's the bottom line. Now you're talking about survival, and you will no longer have the luxury of testing Russ.
You keep doing this because you've always done it, and like a lot of negative behaviour, it can become a habit. Or maybe this is just a part of your hardwiring. Whatever reason there is for you to keep doing this, now is the time to consciously stop and set the stage for staying alive. I don't know what has recently transpired between you and Russ regarding donating, but do you think you could drop him a line or simply tell him that you are grateful for his concern and will let him know that you will be contacting him about the next step at the appropriate time? Please don't just wait for him to make the next move because there is a real danger that he is waiting for YOU to make the next move. After all, you are the one who will be told when you are able to begin the pre-transplant eval process...he doesn't have a crystal ball. PLEASE...just call him and tell him exactly what you've told us...that there is nothing really to do until you get below 20.
Everyone has "issues". But we can't allow any stupid "issues" keep us from working to just stay ALIVE! I have issues with anger and resentment over this whole thing, but I can't say that those "issues" have even once kept me from doing what I have to do.
PLEASE call Russ. PLEASE. You wouldn't be asking anything of him; you'll just be giving him some info. :cuddle;
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Scarlet, I thnk I've said this before, but your situation is a little like mine. My husband donated to me (kind of) in June, I fought him tooth and nail on his decision to donate, even threatening to call the hospital and tell them that I wouldn't accept a kidney from him.However, he won and in the end I had a paired donation transplant, which is working a treat!
For Peter (husband) life is now so much better. He works full time and when I was on D he'd have to come home, fix his own food and mine (if I was hungry) and prob do some house work. Now I have the energy to be a proper partner to him, we go out to dinner, we do archery, he has dinner fixed for him EVERY night!!!
My brother was a match for me, but was so freaked out by the original blood test that he never followed it up. We live quite far apart, so he never saw the daily awfulness of dialysis, and indeed never asked me any questions or knew anything about my illness. Indeed he asked me the other day if I was going to have kids now! (when I'd told him years ago that I'd been told I couldn't) It's a thorn in my side that my husband had to take up the responsibility that my family couldn't handle (mind you they've never been good on the responsibility side of things!) and I am thankful every day that some one in this universe loves me so much that they put their own safety on hold for a while in order to improve me life dramatically.
BTW the thing that swayed me on the husband donating issue was a surgeon saying 'you'd do the same for Peter wouldn't you? Then you should let him do this for you!' (he was right!)
This has turned into a bit of a ramble, but just wanted to let off some steam and also let Scarlet know that she's not alone in this...
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Carla's post put into words something that has been in the back of my mind, something that I think we lose sight of. We have to remember that CKD/dialysis affects our spouse and our children. I watch my own husband, and I can tell he is worried and anxious. He doesn't know what to do while I am sobbing. He knows he can't console me. He knows the future is frightening for me. So far since I am not on D yet, his life hasn't been impacted on a day to day basis, but once I start dialysis, his life is going to change, too, and I worry about how things will work. After a long day at work, he's going to be coming home to a sick wife who probably hasn't been well enough to get all of the grocery shopping done, not to mention the laundry and the cleaning and the gardening and the cooking and everything else I do around here.
If my husband could donate to me, I'd take it in a heartbeat because it would restore some normalcy to HIS life. I know that giving a kidney is heroic and saintly and marvelous and courageous and all that stuff, but geez, I've had a caesarean, a hysterectomy, a fistula created and a gallbladder removal, and in the grand scheme of things, donating a kidney these days isn't nearly as dangerous and the combination of stuff I've had done to me.
My point is that the donation of a kidney by a spouse can be a selfish thing...a desire to have a normal life again, and there is NOTHING wrong with that. You want to have a normal life without dialysis, he wants you back to your old self, too. I'll be the first one to admit that if I were my husband, I would MUCH RATHER give him a kidney than have to faff about with NxStage every damn day!! Take my kidney if it means that I don't have to think about his stupid potassium and phosphorus and this number and that number. I know a spouse with a transplant still needs TLC, but it ain't dialysis!
So, thanks to carla13 for pointing this out!!
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Well in the end I could not bring myself to call Russ, but I have sent him an email. I let him know that I have not been cleared as a transplant candidate as of yet. Due to cancer surgery when I was 30, the doctors says that there might be "a complication" what ever the hell that means??
My next Neph appointment is on Dec 9th and I have a list of questions ready. I hope to get answers, even it they may not be answers that I like.
In the mean time we are butt deep in snow all of a sudden :( and I just want to pack up everything and head for the sun. Bruce and I are headed to my dad and Rita's (2nd wife) for Christmas, they live in Grenada in the West Indies....coming BACK from there will be just peachy! :sarcasm;
The trip is kind of a "last hurrah" as we do not know when I will start on D and once I do, going to Grenada will be out. Rita has looked into it and there is ONE machine for the whole island!! People get one maybe two treatments a 7 day week.....that is barely sustaining life, not a long life expectancy for these folks....
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This thread reminds me of Epoman's thread "RANT TIME: I always knew the "answer" but I just never asked, WELL I DID AND.." http://ihatedialysis.com/forum/index.php?topic=1588.0
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I have a little update to this story.
You all know that I am not the world's most optimistic person. There have been a couple of times in my life when I could see, in the flash of a moment, the future, usually not for the good. Often this happens when I just "know" that the sports team I support is gonna crash and burn...I can see it so clearly, and I've won some money in this way.
Anyway, if you go back to my first post on this thread, you'll recall that last year, in the course of my well-woman exam, I mentioned that I was on the transplant list. My gyn had known that I had CKD, so I was updating her on my condition. She immediately offered me a kidney, and I felt she was sincere because even though she wasn't a neph, she had enough medical training to know what kidney failure meant. She seemed genuinely excited by the idea of being able to help, potentially. The she said, "I'll have to talk it over with my family, but send me the contact details of your coordinator." As soon as she said that, I had a vision as clear as day of her husband not allowing it. I don't know this woman well at all, and I know nothing about her except that she ran the Chicago marathon before she turned 40 and has two children. I don't even know her husband's name, but I SAW him not allowing her to donate.
I didn't hear a thing from her for months. I never expected to, and even though I appreciated her offer, I just sensed something. I really didn't believe in my heart of hearts that she would have just forgotten me. I can't claim to have a huge amount of faith in the innate goodness of people, but for whatever reason, I did have some faith in her, at least enough to feel disappointment that she had not contacted me to tell me "no."
Well, she called me today. As I had seen so clearly so many months ago, her husband didn't want her to donate. It didn't make me feel bad because I had already known it and had accepted it, but she was clearly unhappy about it. She said she had been thinking about me for all this time, but what could she do? She had to respect her husband's wishes; I'm fairly certain he did not want to risk her wellbeing seeing as they have two young kids, and I can certainly respect that. So, I had to try to make her feel better, to console her, which was really odd.
But the real reason she called was to tell me that she "might have a kidney for me". At first, I thought she meant herself, and I was confused because that's not what my magic sight had shown me. :rofl; But then she explained that her husband wasn't on board with it, yet she had a patient come in today who happened to mention that she was getting her medical documentation in order because she wanted to be a kidney donor. So my doctor friend said, "It so happens that I have a patient who needs a kidney!"; she was calling me to see if it would be OK if she gave my contact details to this lady. Of course I said, "Yes." She said she'd give her patient a call tomorrow, and then she asked me to let her know if anything came of it and if so, to think of her.
The odds of this woman being a match, etc are of course slim, but this isn't why I'm telling this story. I'm telling it because it really is true that there are people out there who want to help people who are suffering and who would risk medical intervention to do so. I've been feeling rather down about all of this political talk about reducing spending when it seems to be the poor and disadvantaged and sick who are being sacrificed. I got an email today from the Association of Individual Development; they are a local charity who help with housing and employment for adults with developmental disabilities, and their funding is being slashed to the bare bones, the result being that a lot of these adults simply will not have a place to live. It just made me cry. My own son is autistic and my husband's only sibling is severely autistic (non-verbal), and what will happen to them when we parents are dead? So to hear of one lady who is willing to give a kidney so that someone she doesn't even know can have a better life is like a balm. Whether she is a match for me is irrelevant; that she wants to do this for a stranger is so....well, words fail me.
The other reason I wanted to write about this is that I feel bad for my doctor. She quite literally saved my life once, although that didn't necessitate her giving up a kidney and taking that kind of risk to herself. But she looks after people and wants to help them. She delivers babies and has probably saved a few in her time. Imagine what it must feel like to her to offer to help but have a husband who refuses to go along with it? I could hear the frustration in her voice, and I imagine that must have been a very difficult conversation. It obviously has been on her mind for quite a while. I've heard of family members opposing such a choice, but I've never personally encountered it. It is human nature to compare your situation with that of someone else, so I have to say that if I wanted to donate a kidney but my husband opposed it, I'm not so sure I'd look at my husband through the same eyes ever again. I hope that this has not caused any real conflict between her and her husband. She said she hoped that in time, he would reconsider.
Anyway, if anyone tried to read all of this, WAKE UP! It's just made me feel all weird, especially since it was just last night that my husband and I were talking about her and whether or not the next time I go for my check up, I'd be shifted to another gyn in the practice. And then today, after all these months, she calls....
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I think it's so great she actually DID come back to you and let you know what the deal is and how she wanted you to know how SHE felt, and the bind she was/is in. I understand she was in a difficult position but remember SHE put herself in that position with her desire to help you out. At least you understand this and didn't expect anything.
I think it's fabulous that she has made this link for you - and even if nothing comes of it it must be very encouraging for you to know that she's still out there looking out for you.
A personal opinion now, feel free to ignore given that I'm a) male and b) not married, but this "have to obey husband" deal kind of irks me a bit. Yes, a marriage/relationship is all about compromise, respect, loyalty, support etc but I think it also should work both ways. It's your doc's body/organs - hubby doesn't own them?!! I mean shouldn't it be her choice and shouldn't he be supporting her desire to want to help? Heck, when he married her he knew the sort of person she was given she was a doctor(or going to be, depending on when they met). I guess that's a curly one - right up there with "If a woman gets pregnant and the male partner doesn't want the child can/should he force her to get an abortion?" - and I'm NOT suggesting this thread digress in what would be a pretty difficult and emotional topic/can of worms.. but yeah that's just my view on that. I guess I'm trying to say if I was the husband I would hope I would encourage my wife that fi she wanted to do this thing, or at the very least investigate the possibility, that I would be behind her. That's just me though. I guess that's why she didn't marry me!! :rofl;
Thanks for the update MM and obviously best wishes that maybe this chance goes somewhere positive for you!! :2thumbsup;
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Well, Richard, I confess that your thoughts mirror my own, and I am trying to be very charitable and give her husband the benefit of the doubt. When I told my own husband about all of this, his opinion of her husband was, "Selfish ba*stard." And maybe that's exactly what he is, but maybe he feels he is protecting his family in some way, or maybe he was very annoyed that she made this offer without consulting him first, or maybe...well, I don't know. I have no doubt that what is at the core of his refusal is the idea that he will be inconvenienced in some way. No other explanation makes sense. His wife is in the medical field and understands that at least surgically, kidney donation is far less complicated and dangerous than most of the operation she performs on her own patients on a weekly basis. He knows that she is in a field that treats compassion as a big plus. So that leaves how donating would affect HIM. I personally would be extremely proud of my husband if he were to tell me that someone he knew needed assistance in some way and that he wanted to help just because he could. But she is the one to have to live with him, and family comes first, and my opinion is irrelevant.
I posted this story just because I thought it was interesting to look at this from the viewpoint of a prospective donor who was facing obstacles of her own. I mean, how do you make a phone call like that? How do you say to someone, "Look, I know I made this offer to you, but I have to say 'no' because my family doesn't want me to do this for you." How did that make her feel? I know this sounds really stupid, but I found myself hoping that I get a kidney from this other woman because I know it would make my DOC feel better! I really like her; she's a super lady, and I hate the idea of her feeling bad. I could TELL she felt bad...I could hear it in her voice. And I feel bad that she feels bad. ::)
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It is a lot harder to be admirable and explain the decision directly to you. I won't discuss how many of our friends offer to get tested, receive the information and back out without a word.
However, every positive crossmatch is like a miscarriage. You want it so badly and it instantly slips away.
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My cousin was the very first person to offer me a kidney when I needed my second transplant and she was adamant that she be the one to do so. I was very lucky that I had a lot of folks willing to step up to the plate for me and so I had the luxury of choice and realize that I might have felt differently if she were my only option. I would NOT have accepted my cousin's offer since her husband was scared and did not support her decision. They have two very young kids and undoubtedly he would have been inconvenienced, he doesn't really know me well personally and he worried about the kids seeing their Mom in even temporary pain. All of this may seem selfish but it made sense to me and I understood his thinking and his feelings. I would not have wanted to be the catalyst for any marital conflict between them and although he couldn't stop her and she was adamant that she would do it anyway, I strongly felt that it was too big a decision for someone to make without the complete and unreserved support of a spouse. The fears and hesitations of the people who are unable to donate a kidney don't seem strange to me or even selfish, I think they're understandable, and this is what makes the act of donating by people who can set all these aside so heroic in my view. My donor doesn't feel heroic but she is, not because others are cowardly or selfish but because she (and all the other living donors out there) can do this thing that so many cannot. I often wonder if I could do it myself had I never been personally affected by kidney disease. I wouldn't hesitate now of course but we never know which camp we'd fall into if the shoe were on the other foot.
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He worried about his kids seeing his mom in even temporary pain? Really? Really? You know, something about this rings untrue. On the surface, it sounds all noble. Anytime someone couches things in terms of "I'm just worried about the kids", it raises a red flag because lots of people hide behind their kids for all sorts of reasons. I don't know your cousin's husband, but this just doesn't sound right to me.
I don't really need to understand people's fears. I LIKE understanding people's fears and the reasons behind them because I am curious about how people think and why. I don't feel the need to judge, but I do confess to enjoying learning about people's thought processes. But my understanding is irrelevant; it won't change anyone's decisions, nor should it.
I'm all for protecting kids; my own son is autistic, so the desire to protect my own child is boundless. But my kid has go live in this world just like everyone else, and he has seen me ill and in pain. He has seen natural disasters but has also seen how people can rebound and rebuild. My kid worries about seeing me on dialysis. He worries about me dying because no one will give me a kidney. I'd love to protect my kid from those worries. But I don't tend to protect my son by shielding him from life. Instead, I do try to give him coping skills, and I try to just explain to him that life is hard. It seems to me that your cousin's husband might have attempted to explain to his kids what their mommy was doing, why she was doing it and why it hurt. If they're old enough to understand she is in pain, then they are old enough to be told WHY she is in pain. Just sayin'. :rofl;
I'm curious, monrein...how did this cousin convey her husband's disapproval to you? Did you ever get the opportunity to talk to him directly? If so, how did he explain his feelings? What exactly did he say? And back to your cousin...how did his disapproval make her feel? How did she tell you "no", or did you spare her that particular humiliation by telling her you would not accept her offer? What do you think you would have done if she HAD been your only offer?
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Monrein, I just love reading your posts, there is always something so well-mannered and soothing about them. I agree that it is impossible to tell what I would have done should I have been the one in a position to donate. I believe my original donor fought to donate, but not in an aggressive sense - I think he was also trying to save the other potential donors, some of whom were also children in my recollection. I don't know - he certainly wanted to donate bone marrow to a stranger. I always thought of myself as like him, but now that I perhaps could donate (in a few years that is) I am just not sure I could do it. Going through all of that again, especially the part where I could muck up my own organs or die, plus the indescribable pain - I just don't know.
MM, I totally believe the part about not wanting the kids to see her in pain. She's their mother. I had a friend who had never let any of her three children even see her lie down! This was obsessively important to her. She wanted to murder her spouse when he brought her two children in to visit when she was about to give birth to her third child. She also offered to donate and spoke with her husband and he agreed, but in her words, did not understand it and thought she was crazy. I can pretty much assure you that had she donated, she would have moved heaven and earth for her children to not see her in any pain. I think she felt that she had to be a strong mother figure and not show any weakness. Now I'm the type to invite my kids into our bed to watch a program or just talk while we are all staying warm under our duvet, but she clearly was not, and that's her right.
My older child when I so much as wince will be right there with an "Are you OK, Mommy?" He seems to be permanently on the alert for my next major collapse. I had to make a family announcement on Sunday that yes I am ill, I will probably remain this way for many days, miraculously your father is not leaving town, and I am going to get over this and be fine.
Anyhow, I am not sure I understand why it would raise red flags about being worried about the kids. I was terrified for my children going through the transplant. They still carry the emotional scars today, as is clear from my older son's nervous demeanour when it comes to me and my health. I still get asked by both of them "are you going to have to go to Chicago?" I think they are going to grow up with a massive grudge toward this strange place called 'Chicago' that kept them from their parents for weeks at a time. :laugh:
I would sincerely hope, monrein, that your cousin did not consider it a humiliation to have to withdraw. She got tested, she did her best, and she did more than most would. Having gone through this second transplant and watched my husband suffer, it is clear to me that I have not been giving live donors quite enough credit for what they are agreeing to undergo on behalf of another.
MM, this newest development sounds very promising. Sounds like the doctor is going to be a sort of kidney scout for you. She sounds like a lovely ally! I have high hopes for you that this is it! Best of luck.
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Anyhow, I am not sure I understand why it would raise red flags about being worried about the kids. I was terrified for my children going through the transplant. They still carry the emotional scars today, as is clear from my older son's nervous demeanour when it comes to me and my health.
But monrein's cousin was not having a transplant. Her cousin was not the one who had been ill for such a long time and had gone through so much like you have. It's entirely understandable for YOUR kids to be worried about YOU because YOU have had to deal with so much, and your kids have had to witness a large part of it.
I'm being sexist. That's the bottom line. I just have this gut feeling that if it had been, say, the HUSBAND who wanted to donate, monrein's cousin probably would not have said, "I don't want you to donate because I'm don't want the children to see you in pain." I just suspect that the husband didn't want to have to deal with the kids and a wife just out of surgery. OK, that probably makes me a horrible and judgmental person. I'm not saying that's what happened, but I am saying that that's what I suspect. I hope I am wrong, but even if I am right, it's irrelevant. Perhaps I read monrein's post wrong, but I read it to say that it was the husband who didn't want the kids to see their mom in pain, not that it was the cousin herself who was trying to protect the kids from this particular circumstance.
I know I would have felt humiliated if I had offered something but had to come back and say no because my husband wouldn't let me. I'd feel humiliated on all different levels. That's does NOT mean to say that I SHOULD feel humiliated, just as monrein's cousin SHOULDN'T feel humiliated and my doc SHOULDN't feel humiliated. But people usually feel things they "shouldn't" feel, and this is why I am a bit concerned about my doc. I said everything I could think of to let her know that I was very grateful for her even considering it, that I would never forget her offer...but there was just something in her voice...sadness, regret...I'm not sure. But I felt really bad for her and didn't know what more to do. :(
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OK, so back to my cousin. First of all, she never did withdraw her offer. Four people were tested, all matched and based on age and situation, then a decision was made as to who would then undergo the more thorough matching process. This is how it works at my hospital here in Toronto. We, along with the social worker, felt that my sister-in-law was the best choice, before even my husband.
My cousin lives in Florida, far away from here so she (like my eventual donor, my sister-in-law, did) would have needed to be here for a week of testing (in November) then back for a month around the time of the transplant in February. The children were two and four at the time. My cousin's mother, my aunt who also offered to donate, as well as my cousin herself, told me about the husband's concerns which were apparently pretty strong. My cousin wanted to override these concerns and do it anyway, amazing in itself since she is very very squeamish about, well everything really, and cannot even touch raw chicken or eat meat with a bone to give some minor examples. If she ever saw my fistula I'm sure she'd be out for at least ten minutes. I wondered about whether marital issues were being played out with this as a convenient arena for combat but I see these folks infrequently and only have the opinions of other family members on which to base any conclusions. It was suggested that they see a transplant counsellor together to help reassure him but I don't know if they ever got to that point. My cousin appeared to be somewhat upset that she was not chosen to donate although if I were her I'd have felt more relief than disappointment.
My thing about this whole donation process though is that I really don't think anyone OUGHT to give me a kidney. It may be that they're scared, or selfish or protective or just plain mean but, in my opinion, it's their prerogative to keep that organ right where it was when they were born (after they're dead...not so much...give them up to people who need them). I don't think it's altogether sexist either...wives can worry about being left alone with children to raise should anything go wrong with a husband's donation...I can easily understand that. I also truly, deeply, sincerely believe that one can and ought to be able to change one's mind about donating, based on any reason at all really, even though it might leave me disappointed. This is why there is a need for good transplant social work...sometimes a potential donor might need to back out and their social worker can help them through this. The night I before I left for the hospital I told Kathy one final time, as I had told her at regular points in the process, that she could change her mind even at this point and that would be OK. I meant it. Being noble and generous and brave, heroic if you will, isn't a common denominator in human beings. It's an ideal, and thankfully there are brilliantly wonderful people out there who step up and do amazing things that to them seem fairly ordinary.
BTW, I never did tell my cousin that I wouldn't accept her kidney, although I did raise the issue with my transplant social worker (she would have had a separate one at my hospital, as did my sister-in-law). Had she been my only potential donor I would have asked her to wait for a few years until the kids were older and her husband might have a chance to come to grips with the idea. I never spoke to him in person about his concerns because I didn't see it as my place to do so although my aunt, who's a nurse, was quite involved in conversations about the safety of transplants in general. I would have felt it unfair to try to guilt him into being a "better" person about it all. Again, I'll say that I'm not 100% sure that I'd have been able to be a donor without my own experience of dialysis. That's not noble to admit but it's the truth so perhaps ESRD has made me a better person but I'd still have passed on the lesson if I'd been given a choice.
Another very humbling thing in light of this "confession" about my own potential cowardice/selfishness as a donor is that I had 13 people offer me kidneys, although some were quickly ruled out due to high BP or other issues. I remain gobsmacked by the whole business but incredibly grateful and awed.
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monrein, thank you so much for all of that. I truly don't want to be nosey about your experiences with your family and your (potential) donors, but I am really new at all of this and so have nothing really to help guide me other than stories from people like yourself. I am grateful for any insight whatsoever into what a potential donor may think or feel, and why. I remember you telling me a long time ago that right up to the final moments before your surgery, you were still telling your donor that she could still back out. If I ever am lucky enough to have a live donor, I will tell him/her that, too, and I have you to thank for that insight.
I agree wholeheartedly that no one "ought" to give anyone a kidney, although if it were a parent who could donate to his/her child, well, that might be the one case where maybe someone "ought" to donate to another. And I also agree that anyone should be able to change their mind at any point in the process for any reason, although I do sometimes wonder if there are people out there who tout themselves as potential donors who actually have no intention in following through. There are all kinds of people who can be emotionally manipulative.
Isn't it strange...my main concern at this moment is my doctor's feelings. I'm not really disappointed because I had already "seen" it. But she has been on my mind all day. But my husband is really upset at HER husband. I did not really anticipate having to deal with my husband's disappointment and hurt feelings. I think he may have a lot of fear and trepidation that he is not letting me see, and I suspect this incident brought some of that to the fore.
Anyway monrein, thanks for coming back and explaining more. You've always got some lesson to teach me! :cuddle;