Potential Donor, 0/6 Match

[laurenf]

Hi. I just had my HLA tested to see whether I am eligible to donate to an acquaintance. They said I am a 0/6 mistmatch. I have been doing some reading online, and it sounds like my kidney would help the recipient but not as much as a 6/6 match would. I am trying to decide if I still want to offer the recipient my kidney. I have never met the recipient, and it's possible that he will say no to a 0/6 kidney anyway. My mom is worried that I will have kidney problems eventually because we have a familial history of high blood pressure and diabetes, but neither the transplant coordinator nor my primary care doctor asked me about that. I'm just wondering if the sacrifice will be worth it, if his body might end up rejecting it, or if he might get sick with something else while he's on immunosuppressants. I feel like I don't really have enough information. I would really like to hear from people who were 0/6 matches and donated anyway.

[sherri]

Lauren,

Sounds like you are just in the beginning stages of being tested and I agree, you don't have enough information yet. There is a lot of information on this forum to help educate you. So start reading, talking to your PCP, maybe an outside nephrologist to see if becoming a living kidney donor is something you would like to do.

In terms of the 0/6 match. It is true that the closer the match the chances of the kidney being rejected is lower. However, there are those who are a 6/6 match and the kidney transplant fails for all sorts of reasons and those who are a 0/6 and the transplant is successful. There is no reason why a potential donor would be rejected  because of a 0/6 match but if there was another donor who had stronger HLA match they may want to consider them first. You and your recipient may want to see if there are other potential donors not only for the matching reason but also to take the pressure off of you. If there are others then you may be able to consider donation in a less pressurized environment.

The other issue is family history you mentioned. In order to become a donor the transplant team will do a full medical history to find out your medical history as well as first and second degree relatives. You may want to consult with your own doctor who knows your history to see if the benefit outweighs the risks for you. A family history of high blood pressure and diabetes as well as other illnesses may come into play. African Americans donors do not do as well as white donors. You can ask the transplant center to give you some articles to read about the risks of living donors and also look for articles online as well.

Keep researching and educating yourself. good luck on your journey.

Sherri

[Orchidlady]

Lauren,

When I tested for my husband we were 0/6 match. I was disappointed and felt, as you do, that I wouldn't be giving the "ideal" kidney. The center told us that the antirejection drugs and regimen nowadays is so sophisticated, that the antigen match becomes almost immaterial.

I do think there are other things that come into play such as the health of the recipient, reason for kidney failure, underlying diseases/conditions, etc. rather than the antigen match. At that 0/6 match, my husband is on minimal antirejection medication compared to others we know that had better matches.

It sounds as if there are other concerns that you have, but I wanted to at least share my experience on the antigen match. Best of luck to you!

[Fr Pat]

Dear "Laurenf",
      If neither the transplant coordinator nor your own doctor has as yet asked you about your family medical history, I hope it is because you are still early in the investigative process. A history of high blood pressure and diabetis in the family should certainlt be taken into account. If you do go ahead and donate, you will have to be extra-careful afterwards to stick to a good nutrition/exercise program to avoid diabetis and high blood pressure. You will have only one kidney left, so you'll have to take good care of it!
     If you go ahead with the donation, but a closer match is desired, you can also look into a kidney"swap" where you donate to someone who is a closer match and that person's donors gives to your intended recipient. www.kidneyregistry.org and www.paireddonation.org are two sites that try to arrange such "swaps".
     Take your time and continue to get well-informed. In the mean time if there is anything in your current life-style that puts you in greater danger of developing diabetis or high blood-pressure this would be a good time to make some changes for the better.
       best wishes,
          Fr. Pat

[sloaner1982]

Hi Lauren,
You asked to hear from donors who were a 0-6 antigen with their recipient and here I am! But, my story is not a good one. You see I was NEVER once told by anyone BEFORE the transplant that I was 0-6 mismatch.  It was not until AFTER my recipient began experiencing mnay problem trying not to lose the kidney that I learned this information. He had been told- but not I. He had been told that because of the improved immune surrpressant drugs now available that they could make it work. Long story short is that they ended up overdosing him so much on immune surrpressant drugs that they gave him the BK virus, Then it was a fight to get rid of that. Sad ending where the kidney eventually failed within 6 months. My red flag went up when I saw you have a history of diabetes and high blood pressure. I have learned after my donation that those are the two main things that will take out a kidney. I would not advise you to continue with your quest to become a living donor. Not only because of those two things that are huge red flags, but because of many other things that I have learned AFTER my donation. I can not change that mine is already done. But, I hope to use my very negative and sad experience for a positive purpose and that is to help educate and inform other potential Living donors to become FULLY and COMPLETLY informed before making the very important decision about giving up a vital vital part of their body. If you feel you still want to press forward- please please research and educate yourself and do not rely soley on the transplant center/surgeon/ team to tell you all that you need to know. I am telling you right now that they will not. Mark my words, THEY WILL NOT.  Please check out lifeafterkidneydonation.wordpress.com and also do lots of research on livingdonor101 they is lots of info out there that can help you be informed. God Bless and take care.

[sherri]

sloaner,

I am so sorry to hear about your negative experience donating a kidney. It sounds like everything that can go wrong did! You mentioned that you try to educate potential donors about researching living donation and educating themselves. Are you involved in a formal program? How do you get in touch with potential donors or is this something that you do on forums like this?

Have you ever pursued legal action as you stated you were not fully informed before surgery of your 0/6 match and the risk of CKD as a kidney donor? I wonder if the living donor community was more vocal would our interests be protected more fully?

All the best to you as you face the challenges stemming from your generous gift. Wishing you all the best,

Sherri

[SWB]

Sloaner,

I hate to hear of your ongoing issues from the donation.  However, I have to say that I was extremely informed of the medical risks for donating and potential future risks/issues that might arise.  My facility (UAB) gave me significant amounts of information so I don't know that it is a situation in which every facility does not address and share the risks.

Not sure what facility you donated at; however, based upon your posts, it sounds like you might want to reach out to them regarding the issues you are experiencing and/or consider what Sherri pointed out in terms of litigation. 

There are risks from donating and the procedure is an elective one from a donor's perspective.  It is a choice that we make and should always be an informed one.  However, it is a major surgery and the outcomes/experiences you have are highly dependent upon the sugery team and facilities.  And as with any major surgery, it is crucial that the patient acts as their own advocate and get informed/educated. 

Warmest regards - Scott

[Aries7]

Hi Lauren,

I thought I would share my experience. I donated to my husband and we were a 0/6 match. We just celebrated the 3 years anniversary of the donation, and so far, my Husband has done extremely well with his new kidney. Thankfully, he has had no rejection episodes or problems to this point. God willing, his kidney will continue to do well for many, many more years.

I agree with what Orchidlady said about it also really depending on the overall health of the recipient. Other than having a kidney disease since he was a child, my husband is rather healthy, so I believe this more than likely is also helping him.

I would also proceed with caution if you have a family history of diabetes and high blood pressure. One of the things I was told by the transplant team before I donated is that those are the top two reasons why people end up needing a kidney transplant.

I wish you the best of luck. Please keep us posted and please feel free to visit this board and ask as many questions as you have.


Linda