The agony and the ecstasy

[MooseMom]

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.

[paris]

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.   

[Riki]

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...

[RichardMEL]

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.

 

[Jean]

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.   

[monrein]

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.   

[MooseMom]

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.

[okarol]

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.
 

[cariad]

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 ( 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! ) 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!!!

[boswife]

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..

[MooseMom]

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!

[RichardMEL]

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!!! 

(yes darling, our super secret affair is still on and I eargerly await your next PM...  )

[Scarlet]

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

[MooseMom]

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.

[Poppylicious]

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.

 

[MooseMom]

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.

 

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!

[Bruno]

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 .

[Scarlet]

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 

[MooseMom]

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 

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.

[cariad]

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!!! 

(yes darling, our super secret affair is still on and I eargerly await your next PM...  )

OK, so I've been really short of luck this past year! Sure, rub it in!! 

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. 

[Riki]

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.

[billmoria]

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. 

[MooseMom]

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. 

[bette1]

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!

[paris]

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        Keep us updated as you hear things.  A living donor is an amazing thing.  Wishing and hoping for a wonderful outcome.