I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: Beth35 on April 23, 2009, 06:16:02 PM
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Well, I'm kind of shocked. I went to the pretransplant clinic the other day to try and get back on the list before I need dialysis again. My mom must have mentioned it to my brother because he called me today and said he wants to give me his kidney. Wow. First of all, it's great that he is offering.
Our blood types do not match but they say they can do transplants now without a blood type match. I'm trying to research that a bit and see how hard it is. How common is this? Does anyone have any experience.
There is the other option of trying to match my brother's kidney with someone waiting for an AB blood type who has a willing donor with my blood type (type B) so we could swap. I wonder how long that process takes?
Does anyone have any knowledge or advice on this? Thanks for your help!
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Mayo Clinic does transplants with incompatible blood types:
http://www.mayoclinic.org/kidney-transplant/
(If you look at the videos, Dr. Stegall was my surgeon for my positive crossmatch transplant. He does a lot of research. )
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what a cool brother he must be!! :clap; :clap;
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What Glitter said! :clap; :flower;
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I don't have any advice except to relate where I am at with this sort of situation. My brother is also AB and I'm A, so he's no match for me.. however nurses have been pushing me to try for an ABO incompatable transplant with him - and thinking about Tamara and Allan well yeah maybe it could work very well despite the extra stuff you have to go through.
So I mentioned it as an aside to my brother and he got all excited and said he really wants to do it if he can.
I'm in two minds about that though and really have to think hard before I talk to anyone further about it and/or approach anyone with him about being tested and all that stuff.
I'll try and explain why I'm in two minds.
When my sister was denied to donate I felt mixed emotions. On one hand I was of course disappointed - she had gotten through all the physical tests, the psych test and all that and it basically came down to the last meeting for approval and they decided against it based on blood pressure. That's OK I have no issue with the decision of the docs... and in a way I was quite relieved.
I just know that even though it was her choice absolutely to get tested and she was aware of the potential risks and all that of donation and still made her choice to go through with it. I also know that if something happened to her post transplant or even 20 years down the track that could be proved to have been preventable or would not have been so bad or whatever because of the act of donating to me I would still feel responsible for that. I know that seems crazy given it would have been her choice and she said it wasn't an issue for her.
Now I expressed the same to my brother.. he didn't really say much about it at the time - but we were sort of on our way off to different things.. but so I really do need to think about this. It *does* seem silly when I write it down but it is a very strong feeling in my heart and not something I can easily ignore.
Anyway that's just my two cents...
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I think its awesome Beth that your brother is willing to get tested and give you a kidney. The best of luck to you.
I have a lot of the same feelings as Richard dose on this subject. I have 2 very healthy brothers and a few family members and friends who are willing to get tested and have told me they want to give me a kidney. But not only would I feel responsible if something happend latter on down the line to one of them, I would feel like I owe them my life. And that is a lot for someone to carry with them. But then again I talked to a few lovely people in the chat room the other day and was reminded that I wouldn't only be doing it for me but for my children as well.
And if I am not mistaken you have young children too right Beth? So its a hard decision to make. But no matter what you decide the best of luck to you. Let us know how it goes.
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I have the same feeling RM does, not just about family but about live donors as well..it's just me......although you are going to laugh at this...the other day Saul and I were talking and he says well have you made the appointment??? me...???? what appt???? Saul....Very slowly.....Make the appointment at the hospital for them to take a kidney from me and transplant it into you....and yes he was very serious....and doesn't want to hear any reasoning....so I'll wait until we are face to face...sometimes if he can see what I'm saying he can understand...or I have to be able to reason in Spanish for him. He is quite the gentle soul....and this is my man who gets very ill walking into a medical office...gray, green etc.... :puke; as long as he doesn't have to see instruments. :rofl;
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Okay, now you guys are scaring me.
See I have always felt like you guys. The first time my kidney's failed I would not think of taking a family members kidney. I thought, they would be risking their life and I could never live with myself if something ever happened to someone I loved because of me.
But after five years of dialysis and one kidney transplant and now needing ANOTHER one, I'm starting to think differently. The transplant clinic says it's such an easy procedure. Uh, I don't know. Now I'm starting to have second thoughts.
I just know that kidney's from live donors last twice as along as kidneys from cadavers and I don't want to have a kidney transplant every five years.
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Go for it. People live fine with one kidney. I would try the donor switch thing so you could get a B kidney.
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Beth, like Rerun said---Go for it! Your brother is offering a gift to you and your whole family. The transplant team won't let him donate if it will affect his health. They do very careful screening. Tell him he never has to give you another birthday or Christmas present! At least, start the process. You can always so no, but it takes a while to get through the tests. I am hoping some who has donated a kidney will reply so you can see how well they have done after donation. Okarol's daughter's donor just ran in the Boston marathon. Giving a kidney hasn't slowed her down. Keep us posted. :cuddle;
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Beth I am sorry if I scared you. I didn't mean to do that, just adding my two cents. You need to do what is best for you. And I might be in the same place in a few years. If you are ready do it. Like Paris said just tell him he never has to give you another Christmas present again. *smile* It won't hurt him, he will be just fine. You do what you need to do. Sorry if what I said botherd you. :cuddle;
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It is such a hard decision. My son was in the process of being tested when I was called. After I got home from having my transplant from a deceased donor, I got a call that we were a match. I am so glad things worked how they did. I didn't want him to donate.
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You can learn more about living donation here http://ihatedialysis.com/forum/index.php?topic=3701.0 and if your brother wants to learn more he can go to the LDO message board.
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Oh Manda, don't worry...you didn't say anything to make me feel bad. I DO want to hear all sides of this and see what is what. Life is just so hard and my head is spinning about all of this.
Thanks for the responses and the feedback everyone and thanks for the links. I will check them out now. I'd love to hear from anyone who donated or from someone who recieved from a live donor.
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Beth my Father-in-law gave a kidney to one of Otto's brothers over 30 years ago he's 83 and still kickin.. :cuddle;
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Rerun etc - yes, I totally agree with you that people do live fine with one kidney. In a way that is not my issue.. my BRAIN knows the stats and how fine it probably can be.. for me the issue is in my heart. What can I say? I'm a big softie and wouldn't hurt a fly.. somehow being selfish to take a kidney from my brother MIGHT cause issues down the track, and I would feel horrible should that happen. I know there are no guarantees in life, but it's very difficult for me to think about affecting someone like that - specially when it is essentially a selfish need for me.
Beth - I think you've pointed out there is a prime difference to us all - you've had a transplant and 5 years of dialysis.. I'm only 2.66 years into my dialysis oddesy so have a bit of a different perspective.. In a way I want to wait for the "normal" way to happen (yes I know live donations usually last longer... ) - I suppose I want to take my turn like everyone else?
not rerally sure how else to explain how I feel.. other than to say everyone's views are important and situations are different. I'd never try and tell someone to feel a certain kind of way just because I do.
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:2thumbsup;
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That is great news lola.
Richard, I see where you are coming from and I felt the same way. But when I went for my transplant work up the SW's really sell it as something that is safe and is done very often.
This is something we need to take slowly but I plan on telling my brother all of the risks and really letting him know that he does not have to do it. See, this is why I have never asked anyone in my family. I could never do that.
My brother offered and he said he was not going to take no for an answer. I think that is so sweet. So, one step at a time. I'm not sure if I'm up for the ABO incompatible transplant or not but I have to research some more.
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Beth I need to read up more too on the extras they need to do to make the ABO incompatable work.... transplants are something that happen all the time yes, but ABO incompatable is relatively new technology and that has to be taken into account too.
My brother called me last night for 10 minutes before going out somewhere (because I had called him earlier) - before he finished the call he said "So have you talked to the docs further about the transplant?" and I was a bit surprised... clearly it's on his mind... I just told him I need to think about it more, and also talk to my primary neph before I go any further.
It is so beauiful and sweet for our loved ones to offer such a precious gift... it is more than words can express and I feel so lame in a way feeling the way I do... like somehow ungreatful to say "no" maybe??! argh!
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Richard, does your brother know why you are unsure about it? Does he understand that you feel bad taking a kidney from him? I'm sure he does not see it as ungreatful.
I would contact the person on your team who handles these types of surgeries and go in and ask about it. That is what I plan to do. Nothing wrong with getting information.
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Beth,
I'll add my two cents here, as I was a living donor (to my husband Marvin in July of 2000). Marvin got sick and four days later had to start dialysis. When he had his first hemodialysis treatment in the hospital, I was in another part of the hospital being tested to see if I could donate to him (we are the same blood type -- O+). A couple of days later, my results came back; we weren't a good match at all (1/6 antigen match). The doctors said Marvin would likely reject my kidney immediately; I was extremely disappointed. Even though Marvin never asked me to be tested (as he hasn't asked any of the other 9 potential living donors who have been tested for him), it was just something I wanted to do.
Marvin went on the UNOS list, and we were told we'd have to wait for a cadaveric donor. Several others of my family (my brother, my brother's wife, my sister) and several of our friends were also tested. No matches. We waited and waited and waited. Every year when Marvin went for his check-up to stay on the UNOS list, I'd tell his nephrologist, "Don't forget -- Marvin and I have the same blood type." I sent emails to his nephrologist regularly, asking if there was anything I could do to be Marvin's donor (I am very persistant!). After five and a half years, his team finally agreed to let me go forward in the testing (the original was just blood work). They said that the anti-rejection medications had improved greatly in the time we were waiting and that, maybe, Marvin wouldn't reject my kidney immediately. However, they did prepare us for that possibility.
I cannot begin to tell you the EXTENSIVE testing that a potential living donor must go through. With each test, each evaluation, each step of the way, they kept telling me, "This test could rule you out." Marvin wouldn't get his hopes too high, but I felt deep down inside of me that it would work. I "passed" the last test in early June of 2000, and the transplant date was set for July 26 (the day before my and Marvin's 14th wedding anniversary). Marvin had one more hurdle to get over: I donated two pints of blood (one in early June, one in early July) which were transfused into Marvin during two different dialysis treatments. They wanted to make sure our blood didn't "fight." It didn't.
We were both admitted to the hospital the day before the transplant surgery, but we were put on different floors (Marvin on the kidney wing, I was on the surgical floor). It all felt so "right," and I know that doesn't really explain it, but that's what my heart told me. The transplant was a success, and my "old" kidney started working in Marvin's body while he was still on the operating table. I came home three days after the surgery, and Marvin came home the next day. (On a side note, Marvin's transplant hospital started accepting other low-match donors after our experience. That means a lot to me, too.)
How do I feel today? Physically, I can't tell that I only have one kidney now. I can tell no difference whatsoever -- except for the scar. I do have a nine-inch scar from my mid-tummy around to my side, but even it has faded over time and is not very noticeable. I have in-depth kidney function testing done every year just as a precaution (I didn't do this before). The biggest difference in how I feel is on the inside. The whole time leading up the transplant surgery, I was only thinking about how Marvin's life would change and would improve. After the transplant, I realized how being a living donor did something wonderful for my soul. It's a feeling that I can't explain.
Our shared kidney lasted for three years and three months in Marvin's body; then, it contracted the same disease that destroyed his original kidneys (IgA Nephropathy). We were devastated -- especially me. We had hoped that it would last 15-plus years. Even though it didn't last as long as we had hoped, it was still worth it. I would do it again tomorrow. Marvin has been back on dialysis since October of 2003.
I know this post is long, but if your brother wants to be tested, I'd say, "Let him try." Rest assured that he will undergo massive testing to make sure that there's as little chance that he will suffer from the donation (no guarantee, though). He will be tested from top to bottom, left to right, inside, outside, mind, body, and soul ( I think I had 20 or so pregnancy tests in three months -- the last one an hour before the surgery -- at least your brother won't have to do that!). Above all else, the transplant teams do not want to trade one life for another, and they will do all they can to assure that your brother's life will not be adversely affected any more than is "normal" with any other type of surgery. Understand, however, that with every surgery comes risks. The doctors will want your brother's risks to be minimal. If this is something he really, really wants to do, please don't deny him the opportunity to change his life, too.
I say living donation is a wonderful experience for both the donor and the recipient. I'm sure others might have difference experiences, but mine was absolutely wonderful.
Marsha
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beth - in answer to your question I have tried to explain as best I can to my brother how I feel. I am actually not certain he fully understands where I am coming from (although, ironically as a social worker with a psych degree you'd think he would have a grasp of things more than most).. I suppose at the end of the day it doesn't matter so much if he doesn't understand as long as he can respect how I feel.. and it's up to me to work it out internally to a point where either I decide no go, or I can live with it. I am still not sure where I sit in my heart on that one.
In the meantime I think I will:
* Discuss it with neph and get a referral to the appropriate people
* presuming that happens, at least go in, talk with them with him and see what they say and then proceed to testing if my brother is still happy to. It may well be that he will be denied on some test anyway, and the extensive testing will be good for his own general health anyway. And IF he gets through all that (and I do of course) months down the track then we can see where we're at.
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Beth, I received a kidney from my sister-in-law on February 23 rd of this year and she was out of hospital in 3 days and fully back to her life after about a month. She had modified open surgery to remove the kidney. She says she feels zero difference since donating. My reassurance about her health came from the very thorough testing they did here and also from telling her constantly that if she ever had any doubts about following through that it was OK and I'd still never forget her willingness to offer and b e tested.
If you ever need for your brother, or yourself to talk to anyone, let me know and I'll put you in touch with her. She talked to someone from this site who had donated to a friend.
:grouphug;
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I think it's great that your brother wants to give you a kidney. My mom gave me one of her kidneys over 17 years ago. She told me giving a kidney was no different than any other time I got sick....like when I use to get ear infections as a kid and she would lay awake rubbing my ear until I fell asleep. A mom is going to do anything to get her baby better. That was her philosophy.
She is about the only one who I believed was sincere about giving me a kidney. Now....17 years later I need another kidney. I've had several family members SAY they wanted to get tested and several of my BF's family members SAY they wanted to get tested. But NONE have done it. They only said they wanted to get tested to look like they were these big humanitarians. Kind of like "Look at me!!! Look how selfless I am being" But did they do it...no.
I am not saying it's true but I heard it thru the family grapevine. One person wanted to borrow something like $5000 to get a new car (big SUV). They told the person...Hey I am getting tested for "Brightsky69" so give me the money.
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Beth.
I have no brilliant insight other then to say i wish you the best on your decision. I hope you get what you want and if your brother donates he is a great brother/man for giving the gift of life. :thumbup;
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Thanks everyone for sharing your stories with me. It's very exciting to hear from those whose family members have donated their kidneys and also to hear they are doing well.
Marsha, thanks for telling me your story. I got teary eyed reading it. It's interesting because I too have IGA Nephropathy. I'm lucky in that my kidney has lasted ten years and it's still ticking although not for long. I figure any time with a kidney and not having to do dialysis is huge.
I am trying to get ahold of the transplant person who is in charge of the type of ABO incompatable transplant that we would need. I need to get more information on that.
Thanks again guys for sharing your opinions and stories with me.
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Like Monrein, I received a kidney from my sister-in-law (husband's sister) on Nov. 5th. My thoughts on living donors has always been as long as they are fully aware of what they are doing, that they are doing if for the right reasons, they understand the potential risks of surgery and recovery, and that they know how they must take care of their remaining kidney, I say GO FOR IT! They are offering because they love you and they care about you. That takes a special kind of person. Don't poo-poo their generous and selfless offer. THEY LOVE YOU! Just be sure they have all the information. :cuddle; Good luck with whatever you decide. It's ultimately up to you, of course.
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I just want to thank everyone who has posted here as well. Definitely food for thought (hmm renal diet friendly?? :rofl;).. it is good to hear different viewpoints....