From Being an Care Taker to Kidney Donor (Any Input would be great)

[krismimo]

Hello all. Some of you ar familiar with my story and some of you may not. I have been with ny husband for almost four years now. We have been married for almost two of those years, he was diagnoised with kidney failure in 2006. (Before we met). So it is has been aprrox 6 years now. Late last year he got a phone call that if the the person in fron of him on the list did not respond or had turned down the kidney he is the next one up. Of Course we were excited to see what would happen, the person did take it. They told him when he was diagnoised that it would take between 5-7 years, were at a cross roads he has done most of his time so technically he may or may not get that call between now and next year. A BIG Deal. However when he did go for his yearly review they did say it would be better for him if he were to receive a kidney they eould prefer if it was someone who was either brain dead, or possibly a living donor. We made a pact, if he did not receive a kidney in about 5 years I was going to put myself up to be a donor. I want him to get better and to be honest the quicker he is off dialysis the better. They have so many programs out there not even if were not compatiable. I'm going to call this week to set up a appointment for them to draw my blood to see if were even compatable. I'am nervous but I feel for me this is the right thing to do.  We do not have any kids together, I'am young and healthy and I love him so why not?

[MooseMom]

I know you've considered a paired exchange; this might be the perfect option for you both!

[Poppylicious]

I'am young and healthy and I love him so why not?

Absolutely ... 

[bevvy5]

Am waiting on blood test results myself.  My estimated GFR came back a few years ago at 63 and my family doctor told me I would not be considered as a donor.  At the time, Greg's weight would not have allowed him to be considered a transplant candidate.

Fast forward three years, he's lost 80 pounds and his neph asks every clinic if he has any living donors.  Our kids talk the talk but so far are not walking the walk.  So I phoned and talked to the transplant folks who said that at 63, there's a possibility that with further testing I could be a potential donor, including paired exchange as I have no other indicators for kidney disease and eGFR can sometimes be quite off.  So we are not doing a happy dance or anything but it's worth asking.

It's been three weeks and I am going to call tomorrow to see if there are any results of my blood typing and initial health/lifestyle questionnaire. 

We've been together for 35 years - I figure if it did work out and we did split up it would make our property settlement pretty interesting - LOL.  I would do anything to have a "normal" life, even if it wasn't forever.

[krismimo]

HAHHAHAHAHAh, thanks for the input and support. I'am a little nervous don't do well with tests and doctors. But I will try to push thorugh

[krismimo]

Just checking in, I went in for the blood test Sunday, I think they took about 6 or 7 viles of blood they said it would probably take about a week. Right now were doing the compatibility to see if his blood will reject mine. I'am a little nervous I hope nothing comes back bad on my part and I hope were a match! But if were not then there is option 2. Six more days to go...

[Cordelia]

My transplant center told me a 4-5 year long wait on the cadaver transplant list. Last year  my husband was being worked up/tested as my living donor. We have the same blood type, type 0 positive. Unfortunately, even though we are the same blood typed, I have antobodies against my husband's blood.... so we have opted to be involved in the paired exchange program.    Its exciting yet nervewracking as we will likely this summer begin the process IF a match can be found for me.

Best wishes to you and your husband!!

[bevvy5]

I too am still in the process.  Found out my blood type is O and his is B - first hurdle.

Now I am having reams of blood work done, x ray.  Basically have it all done except for the ultrasound, which will take seven weeks to get in.  I head into the family doctor and I want to chat with her about a few things on my bloodwork.

Hubby is nowhere near the top of the list so hasn't had any workups - he starts his stuff on May 11th.

If all that works, then we go in for the typing.  At that point they would do a renogram to check actual kidney function.  Good news is my eGFR came in at 69 on my latest bloodwork.

On it goes.

[krismimo]

UPDATE!!!!!!!! ALL I CAN SAY IS WOW.....

Thanks for all the replys it is helpful to know your not alone. Well I got the phone call today, and it was way more good news than we planned, not only are we a match, were both A's. The cross match showed that he DID NOT reject so I can give him my kidney. We do not have to do the swap program. They still want me to do a few more tests but for th emost part so far so good. Were trying our best to try to plan everything out were thinking of doing this early next year..maybe sooner. Words can't describe how we both feel...just thank you and keep us in your prayers as you guys are in mine.

-hugs and kisses, kris

[MaryJoe]

Kris -What great news!  Doing the happy dance for both of you!
 

MJ

[smcd23]

Wow! That's great news! I donated to my SO in 2008. The workup was a LONG process but it was worth it, even though my kidney didn't make it (see my introduction). Congrats and good luck to both of you!

[krismimo]

Thanks for all the support! I'm still in shock I really wasn't expecting this. We have the same blood type and the test results showed he DIDNT reject it. Now I'm scared... but in a good way. I so badly want this to work for him I hope my kidney works for him and he is fine, onlly time will tell eh? They told me I need to do more testing I'm a little nervous because I'm afraid of doctors, but I know I will get over it soon lol. I hope that because were a match and there was no rejection this increases his chances if it NOT failing. I have to do the work up but since I'm young I get to bipass a lot things( 28 yrs old) which I hope speeds up the process. I know I said next year but if it is sooner I would like to do it by the end of this year.

[emma67834]

My husband told the transplant center that I was willing to donate before us having a discussion about this. I have had my blood and tissue tests done but I am on the fence about actually going through with the rest of the tests. I am nervous and scared about the surgery/rejection and I have 3 kids 17, 14 and 12. What happens if they need one? He has no other family that can be tested due to their own health issues. I feel like the Transplant Center, the surgeon and my husband are all pressuring me into this. My own family is telling me not to do it along with coworkers and friends for I am the only one working right now and I am completely healthy at this point. How do you decide that this is something you are willing to do when you are struggling with the thought that " I may be the only option he has at this point?" He told me tonight that he is getting tired and does not know how much longer he can do dialysis. He has been on it for 2 years now. I feel like if I don't do this and he decides to quit that I am the one that is killing him. Did any of you struggle with your decision like I have?

[smcd23]

Emma I did not have those feelings exactly but I know how you feel, sort of. My SO has a brother and a sister and neither one of them could donate (sister too small and has stones in the meat of her kidney, brother is just a jerk and wouldn't stop his high protein no carb diet for the testing). So it was a no brainer for me at the time - I had 2, he needed one. But when I got pregnant, I started to panic. I worried for the majority of my pregnancy that my little guy would come out and need one some day, that he'd inherit his fathers genetic defect or something related (SO's mom's family all have kidney problems, SO just happens to be the worst). When he came out healthy, I was psyched, and he's 2.5 and shown no signs of having any problems like his dad.

Here is the thing - it is YOUR choice. The majority of living donors live long, healthy and happy lives. In fact, living kidney donors typically live longer than the average person because they start off healthier. Only the healthiest of the healthy can donate, and this was explained to me by the transplant head at the new facility we go to. I understand the whole feeling that if one of your kids needed a kidney, you wouldn't have a spare anymore, but who is to say you'd be healthy enough then to donate one to them anyway? On the other side of that, they might have a healthier, happier father for many more years if you DO donate. And who knows, if they get married some day and needed a kidney, perhaps their spouse would lovingly donate to them.

My best advise to you is to do as much research as possible. I found that to be incredibly helpful for me. And I know the center we went through, they had me meet with a social worker at one point, who said if at any time I didn't want to do it, but didn't want to come out and tell everyone that, I just had to tell them and they'd find a "medical" reason for me not to be able to donate. The coordinator might be all gung ho with your husband on this, but as part of the work up you should meet a social worker/psychologist, and you can raise any concerns you have with them, and they can give everyone a reason why you can't donate. You should not in any way feel pressured.

What I learned as I went through the process is you can't live in a world of what if's. I went with how my gut felt, which was that it was the right thing to do, despite my families objections (SO and I had only been together about 9 months at the time) and the objections of my friends. But in the end, even though my SO lost the kidney before we even left the hospital, I felt the whole process was well worth it.

I wish I had a 3rd to donate, now that we know how to prevent my SO from losing another transplant. He's been on PD 3 years and every day is a struggle. I am pretty sure our son is the only thing that keeps him going most days, so I know how it feels to have that pressure, too. I wish I had more to offer than that.

[emma67834]

Thank you for that post.... My husband now knows I have reservations and so the anonymous medical reasoning is out the window. The donor coordinator said that I could use that if I ever decided not to and now that is gone. I am not hip on the idea of doing this and I know that sounds selfish of me due to my anxieties and worry. I have a demanding job right now and cannot afford time off from work and my husband says I am choosing my job over his life and in some cases that may be true. I feel like I have to do this now to satisfy him and his ego and that is not the reason why I think I should do it if I decide to. All I have done is my 18 vials of blood at this point but the pressure from everyone is getting on my nerves. It's like I am supposed to be his savior with my healthy kidney. By the way, my own famliy does not live here close. They are states away and who will help take care of me and who will take care of him when he is 2 1/2 hours away for the first 30-90 days? ARGGGGGGGGGGHHHH!

[MooseMom]

Emma, feeling as you do about the pressure to "satisfy his ego", I am not sure you would be deemed psychologically fit to be his living donor.  Just because you are a blood and tissue match doesn't mean that they might find some other wonky thing to disqualify you, but even if you are physically fit enough to donate, I don't think that a tx social worker/psychologist worth his/her salt would deny that at this point in time, you should be deemed psychologically disqualified.

You are in an extremely difficult situation.  You are in the process of making a decision that will impact you for the rest of your life.  If you decide not to donate, you will have to live with the ramifications of that inaction.  I've known too many people who have only considered how they might feel if they DID donate but have not thought to consider how they might feel if they DIDN't, and they lost their spouse/child/parent/friend to complications of ESRD and dialysis.  Will you be able to live with yourself if you didn't donate and your husband died?  How would you explain that to your children?  Is your husband their father?  If so, how do you think they will react to you?  Have you discussed it with them?  Your kids are old enough to be trusted with an explanation of the situation, and who knows...they may come up with something that you had not thought of.

Good luck with your decision.  You should NEVER EVER feel pressured into donation.  While it can be a truly grand thing knowing that you've saved someone's life, it can be devastating if you submit yourself to major surgery for all of the wrong reasons.  I hope you are given the opportunity to make an informed choice with which you will feel comfortable. 

BTW, there is a reason why tx social workers and coordinators want to know what kind of support a newly transplanted patient will have.  If you truly will not have any practical support post surgery, then again, I don't think you will be allowed to donate.  You will not be able to drive for a while after surgery, so who will take your husband to his many post tx clinic visits?  If you and he don't have a plan in place, I'm not sure you would be allowed to donate, anyway.

Good luck, and do keep us posted on what you decide to do.  Yours is an intensely interesting story, and thank you for posting.

[krismimo]

For me I thought abou this long and hard for two years. And I realised that it would be harder to LIVE without him then to cross my fingers and wait... Ifeel I have waited long enough and I'm tired of seeing him suffer. For me I rather would have done everything I could and possibly fail then for him to die and then ask the questions after the fact. It is too late then for me him dying to this is not a option for me. I know he woudl do it for me, he didn't/never asked me to do it I wanted to do this on my own. And so far I feel good about my choice it is hard to explain but what you do you better/have to make peace with it, either way.

[smcd23]

I think you could still use the medical reason excuse. Would your husband really question a doctor saying your labs came back with elevated liver enzymes or something?

Like MooseMom said, no transplant social worker or psychologist can rightfully say you are fit for donation if you express your reservations.

As far as the aftercare, don't stress about that, having been through it, it's really not that bad. I lived alone when I donated, and my parents were here the day I came home, and left that night. Then I had a friend and his coworker come spend the weekend because he was going to a concert in the city. They took me grocery shopping and helped me with some small stuff, but for the most part I was up and around within the first 24 hours. Then the week after my SO got a ride down and stayed with me for a few days. We were both partially incapacitated but it wasn't that bad. After 2 weeks I was able to drive no problem, and was cleared to return to work as long as I didn't do anything too strenuous. The hardest part I think in your situation would be getting your husband to the follow ups since neither of you will be able to drive. This time around when SO gets a transplant, I think it will actually be harder because I will have to work, take care of the toddler and manage his appointments and such (current facility is over an hour away). So don't let that be a deciding factor.

Honestly, to me it sounds like you're really worried about yourself, and you don't like feeling obligated, and I get that. You should really stress to the coordinator that you do not want to donate at this time, and need help explaining that to your husband, whether it be through a medical excuse or counseling. I know my SO and I had a group session during the work up because I was afraid that he would expect me to be with him forever, and at the time, I didn't know that I wanted that, I knew I wanted to give him a kidney but I didn't want that to turn into a life sentence for me (we're still together obviously, but at the time I wasn't 100% sure we would spend the rest of our lives together). Donating and going through that experience actually brought us closer, so even though the kidney didn't work out, we got our son out of the deal and a better relationship I think most days.

You are also lucky that your children are older - they can be a big help in the aftercare part of it too, don't forget that. I know we don't want to ask our kids to do anything, but I bet they'd be happy to help seeing what you did to help their father if you do decide to donate.

Keep us informed, and feel free to send me a PM if you want to vent, run ideas off or whatever.

[krismimo]

Emma now that I think about it... He is probably scared to tid bits, and although he should have spoken to you first about it. The fear of death affects people in may ways. I'm not saying your wrong for how you feel but imagine how he also feels... the not knowing...the unknown living day by day not sure if your going to see it. How I lived with it this long I have no clue. I'm tired of seeing my husbad suffer I want him to have a regualar life even if it's half a shot I will try it. It is not that often when it comes to a disease that somone or something can possibly not only help but SAVE that individual. If it was you, you would want someone to help you if you could, even if you didn't ask for it. We all just make the most of it when the dice doesn't roll the way you want it. However if you knew there was a chance no matter how small it was that you wouldn't have to roll those dice as much or not at all you would def pursue it. Trust me he was wrong for what he did but in the grand scheme of things the bigger picture, could you blame him? He went about it the wrong way he def did.

However that survival instinct kicked in and he made a not so wise choice. You have every right to feel the way you do and you ahve every right to be scared and NOT want to do it. But there are pros and cons for everything if I may suggest, look at why you don't want to do it VS Why you think you should... sit down to yourself and if you need to write it down do so. If the reasons you don't want to do it are somewhat trivial then maybe you should reconsider... we live in a wonderful age of medicine and doctors.

For example as of right now they are testing through stem cell research if a person can regenerate his or her own organs, the process is you go in and your ok now but you have heart disease in your family and you know you might get it and you might need a transplant or you have lung cancer run in your family, they take your blood and maybe some tissue and match everything to your body type and and dna and they store it for you so if you may need it one day you can use it. As of right now they are working on the heart and lung. It sounds like something from a sci fi movie I know but it is happening as we speak. 

Most of the time donors worry about life preservation themselves, I know this because I went through all of this in my head, I was scared and afraid and thought about this for a few years. Now if your husband is really fighting you over this and trying to force you to do it then it is not right at all. You will more likely grow to resent him in the long run. I hope everything works out for you and I hope no matter what happens you and your husband come to some sort if understanding.

[del]

When hubby first started PD 15 years ago I wanted to get tested to donate.  I had bloodwork done.  We had the same blood type and in the antigen match I am a 1 out of 6 I think.  I saw a social worker at the time.  One of the first questions was if I was being pressured in any way to donate.  I wasn't.  Hubby decided he did not want a transplant especially from me. He was too afraid that something would happen to me. 
If you are going to donate it should be your decision to do so.  You should not feel pressured in any way.  Personally I would not be too impressed with my husband if he had volunteered me to donate a kidney without consulting me about my feelings beforehand. He is probably not going to die without a transplant.  It is not a cure - just another form of treatment .  Probably the best treatment but still just a treatment not a cure.

[emma67834]

Thanks to all of you for your replies. The transplant unit has yet to have me talk to a social care worker just the donor coordinator and surgeon. I do feel guilty for me feeling as I am but this not a light decision to make. I will sit down and make list of my pros and cons to help me decide and of course pray about it!  I thank you all again for your stories and support about this. I will keep you posted on what I decide.

[krismimo]

I received the letter from the UCLA (basically what the kidney coordinator and I talked about) and it said that they tested us in all three categories tissue, blood, and cross match, it said we had a 0/6 antigens brought chills to my spine were basically a perfect match. WOW. I will speak to her this week, questions or concerns, probably more questions than anything. I'm nervous and excited at the same time.

[monrein]

I received the letter from the UCLA (basically what the kidney coordinator and I talked about) and it said that they tested us in all three categories tissue, blood, and cross match, it said we had a 0/6 antigens brought chills to my spine were basically a perfect match. WOW. I will speak to her this week, questions or concerns, probably more questions than anything. I'm nervous and excited at the same time.

http://www.aakp.org/aakp-library/transplant-compatibility/index.cfm

Actually a 0/6 antigen match is not perfect, 6/6 would be but with current meds this has become almost a non-issue.  My transplant (my second one) was a 0/6 match and I have done super well...creatinine never out of normal range.  Best of luck and YOU rock for considering and going ahead with donation.

[monrein]

Thanks to all of you for your replies. The transplant unit has yet to have me talk to a social care worker just the donor coordinator and surgeon. I do feel guilty for me feeling as I am but this not a light decision to make. I will sit down and make list of my pros and cons to help me decide and of course pray about it!  I thank you all again for your stories and support about this. I will keep you posted on what I decide.

You MUST not feel pressured to donate, no matter who says what to you.  Please speak to the social worker about your feelings and take as much time as you need to make your decision. 

[krismimo]

OH well that is odd because they spoke to a nurse ans she said 0/6 was good. Ah well at least I can still do it.. if nothing comes up. So the coordinator told me that I the workup will take a total of three days, one day it would a 24 hour urine test. There are trying to see about kidney function, the seconds day would be I think more blood work, I would have to come in around 630am for them to do a chloestorol test, a EKG and a Cat scan, and possibly me being on the treadmill ( I work in a gym this does not bother me and a pap test, which I have to do on my own. You know what is odd I'm more worried about the PAP test more than anything. I have had a pelvic exam but it has been a few years but NEVER the PAP test I have been meaning to but have not had the chance, I'm going to try to walk in in a clinic this Friday to get it over with and I'm terrified. Cross your fingers for me, I need it. Thanks for all the support so far.