I am hoping to hear experiences from transplant recipients that had a 0/6 match or low match with their donor kidney. I have a living donor, but it is a 0/6 match and I'm not sure I want to risk it. I worry about potential rejections and high immunosuppressant drug dosages leading to bad side effects like diabetes, weight gain, cancer, high BP, high cholesterol , hair loss, bone loss, etc. Thanks for any input.
Anyone with a kidney transplant with 0/6... - Kidney Transplant
Anyone with a kidney transplant with 0/6 match or low match willing to share their experience?
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Sapphire187
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I don't have any help with that, but is paired exchange an option for you?
I don't know if it is or not. I will have to check. Thanks.
Paired exchange is when your donor gives to someone else and that person's donor gives to you - so that both end up being better matches. Sometimes the set up long chains to optimize the matches.
My wife's kidney was totally incompatible for me, but her donation allowed me to get a great match for me. However, I don't know if all transplant clinics can do it.
I had a 0/6 HLA living donor transplant over 6 yrs ago. Kidney and labs are great. Over the years I've had the typical problems with immunosuppression, e.g., bone loss, skin cancers, BK briefly, but I've never had any rejection episodes nor any of the other concerns you listed.
Thank you so much for sharing. Glad to hear you are doing well. It makes me feel better to know someone else did okay with no HLA matches. Do you have to take prednisone? They told me I would be taking Tacrolimus, Mycophenolate Mofetil and Prednisone. I told them I want to set up a managed plan to get off the Prednisone because of the serious side effects it can cause. I know some transplant centers keep people on forever. Best wishes to you.
Yes, I take 5 mg prednisone.
My husband and I were a low match. The transplant team told us if my husband donated to me, I would need treatments before the surgery to decrease the risk of rejection. I can’t remember exactly what the treatments would have been because I was very brain-foggy at the time. Anyway, the team encouraged us to try paired donation instead. We signed up in January 2021, and I got my transplant in June 2021. We are in the United States. My husband donated his kidney to someone out west, then the donor in the west gave their kidney to someone out east, and then the donor in the east gave their kidney to me, in the Midwest. We were very nervous something would happen to the kidneys in transit, but it all worked out. During the six months between January and June 2021, I did end up on dialysis for a little bit, but my husband and I feel incredibly lucky because the kidney I received through the paired exchange program has been doing very, very well.
Thank you for sharing. It sounds like you were able to get a better match by doing the paired exchange. I don't have that option. Glad to hear it worked out well for you. They didn't mention anything to me about treatments before the surgery. They originally told me I was the best match. However, they withheld the HLA match information from me for three weeks. Now six days before the surgery they are telling me none of my HLA antigens match but they think it will work for me anyway. Best wishes to you.
Hello Sapphire187 - I had a living donor (friend) transplant just three weeks ago. We are 1/6. I was concerned about it at first, but talked to multiple doctors, all of whom encouraged me to go forward with it. My surgeon said unless you have a perfect match, 6/6, everything else is relatively the same and can be managed with the immunosuppression and that the amount of meds I would be on wouldn't be any different if I had 1 or 3 matches. The other thing multiple people told me is that having someone local is important in that you don't potentially have to fly the kidney across the country. In other words, the amount of time it's out of a body makes a difference.
Leading up to the surgery I gave myself lots of positive messages -- that everything would go well, my body likes and accepts the kidney, etc. Only time will tell, but so far so good.
Wishing you the best!
Thank you so much for sharing. Congratulations on your transplant! Glad to hear you are doing well. It's good to know that multiple doctors gave you encouragement to go forward. My doctors have not been forthcoming with the match information, withholding it for three weeks and just telling me 6 days before the surgery is scheduled, despite my continually asking for it. So I have been leary about trusting what they are saying. My doctor is telling me they believe it is a good match for me, but how could it be with none of my antigens matching the donor. It's unfortunate because now I'm worried about going forward. So thanks for telling me that. I am not on dialysis yet. This is a preemptive transplant. My GFR is 11, but my electrolytes are still normal and I am feeling fine. That could be the case for a couple more years or things can change on a dime. I don't know. I have an altruistic living donor, so it is anonymous. This opportunity likely won't present itself again, which is why I am thinking I better go forward even though I'm unsure that this is the best thing for me.
How are you feeling three weeks out? How has your recovery been going? I'm wondering what it will be like the first month. All the best to you!
I totally understand why you would be feeling concerned/confused about why they would recommend you moving forward when usually it's thought that the more matches the better. I also was concerned/confused pretty close to the time of my surgery but at a certain point I decided I needed to trust the doctors. I actually reached out to several other local transplant programs and spoke to nurses who were willing to run my case past one of the doctors and everyone came back with the same response. I *still* don't entirely get it. Maybe it's just as simple as, yes, the more matches the better; but what's more important is that it's ideally a living donor and local (less time on ice, out of a body, where blood vessels begin to die). Keep asking for more explanations until you feel satisfied.
Admittedly, recovery has not been a walk in the park. Nothing awful, but the first two weeks or so it was really hard for me to turn from side to side in bed and I got so sore on my back. I have pre-existing back problems so walking has been more difficult because of that. About a week ago, though, I turned a corner and now moving around in bed, getting out of bed, sitting up, and walking are all a lot easier for me. I also had to leave the catheter in for two weeks (!) which made recovery more onerous and uncomfortable. I don't think that's something most people have to do though. I also had a drain (catches the fluid build up around the incision). That may be more common - you can ask about it. If you do have one, that may come out before you leave the hospital. It feels like a slow process of getting better, but when I look back, I do see I've made a lot of strides in these past couple weeks.
Thanks again for taking the time to share your experience with me. It's reassuring to know other transplant center doctors concurred. I think it's time for me to stop driving myself crazy with worry and just hope for the best. All the responses to my post have been encouraging. I hope the rest of your recovery goes very well and it's smooth sailing for you.
Thanks. Wishing you a successful surgery and smooth-sailing recovery as well! 💗
2/6 match. Most centers put everyone on prednisone for life which both makes you hungry and changes metabolic pathways in your body, so yes 20% of all transplant patients get diabetes. It causes bone loss. I went for an evaluation at a center who said “We don’t use steroids because we believe risks outweigh the benefits.” I did a lot of reading online from reliable sources that said prednisone truly prevents rejection, so I’m taking it. I hate it. It sucks. But it beats dialysis any day of the week.
ALL immunosuppressants increase risk of lymphoma and melanoma. That’s the chance you take.
How long have you had your transplant? what dosage of prednisone are you on? Have you had any of these side effects from prednisone : weight gain, high BP, high cholesterol, skin cancer, post-transplant diabetes, bone loss? Thank you for sharing and best wishes.
I am going to say this plainly. Once you are on dialysis, you will understand why 89,792 are on the list for a kidney transplant. They try to normalize it, and some people “do well” on dialysis at first, but it’s horrible. It’s a life support treatment, as is transplant, and while there are still joys in living, it’s often a miserable life. Period. You are terribly exhausted on the days you have dialysis - at least on hemodialysis - and you are subject to unending medical procedures.
On hemodialysis people spend an average 5 days per year in the hospital. Imagine sitting in the same dialysis chair four hours at a time, three days a week, every week. Dialysis never takes a holiday. You don’t get to skip a few times to go on a vacation. Then the rest of that day you are so tired you can maybe force yourself to do one errand that’s it. That was my experience and is shared by most people.
Dialysis is exhausting, and boring too ( you thought sitting through three hour movie got dull) , and sometimes painful when may get cramps in your feet or hands because the dialysis machine is pulling out too much fluid too fast from your body. You can faint ( I almost did twice) or even vomit. It’s common. The paramedics regularly came to my dialysis center. You may witness someone die right on the machine in front of you (well, at my center they put screens around the person as they rushed the crash cart over, who fortunately did not die that day, but we would have known what happened.)
Once you are on dialysis, your forecasted life span is decreased, That all changes when you get a transplant.
Transplant centers themselves live and die by their statistics. Every center has their rate of success and failure posted to the public, Then want their operation to be a success. Please stop second guessing your doctors who have years and years of experience! If they say it has a good chance of success, then trust them.
Your living donor transplant has a great chance of success since you have never been on dialysis, and you would receive a kidney that has only been deprived of blood for a very short time.
Having said that, transplant is not for everyone. People do refuse especially if they don’t want a risk of cancer. That is absolutely their right.
As I said, I only matched 2 of 6 antigens. Not only that, but I received an incompatible blood type transplant with a higher risk of rejection and complications. I am blood type B with a 7 year wait for another type B kidney, but got a blood type A kidney after only 11 months. My donor had Covid-19 when they died but it was not their cause of death. My donor had acute kidney injury.. They tell you about the kidney before you accept it. They found Covid-19 is not transmitted to the recipient but it still gave me pause.
I can only speak for myself here.
My dose of medicines is not any higher than anyone else who got a transplant with better matching.
Do these medicines have side effects? Absolutely. Are some people able to tolerate the medicines better than other people? Yes. It beats dialysis any day of the week.
I take 5 mg of prednisone which is what everyone I know is on. Someone on this site only takes 2.5 g every other day, that’s unusual but good for them.
Yes I’ve had weight gain on prednisone. It’s common for transplant patients to gain 15 to 20 pounds in the first year. I’m a year and a half out and I gained 30 pounds. I know one man who exercises very regularly and watches every single bite, and he did not gain weight. He got both a liver and kidney transplant. He wants to preserve his health as best he can. Everyone else I know gained weight.
My blood sugar went up immediately after transplant.
I am not diabetic but I am now prediabetic. That’s why I’m on zepbound the injectable weight loss drug It often stops people from progressing to diabetes from prediabetes.
Yes I’ve had bone loss. It is completely inevitable as far as I understand it, being on prednisone.
I had three melanomas before my transplant. Once you have one, you are more prone to keep getting them. I have had one melanoma post transplant, but my doctor and I figure I probably would have gotten one anyway .As long as they are caught very very early, as mine were, you can be OK. I see a dermatologist every three months and she examines my entire body for suspicious moles. She photographs any that seem different or else she biopsies them on the spot. This is an investment in my health.
Most people take tacrolimus, the newest and most effective anti-rejection med. I cannot tolerate it, so I was put on cyclosporine, the second choice. Yes it has caused very high blood pressure that 18 months out still is not under control and we’ve been through maybe 15 medicines.
Yes my cholesterol is now higher than it was. That’s why they put me on a baby aspirin regime. (I take an 81 mg pill each day) that helps avoid heart attacks, blood clots.
I’ve been hospitalized three times since my transplant. Being hospitalized even with a working kidney beats dialysis any day of the week. My kidney has always been fine these were drug related.
Did I ever regret getting a transplant? Yes. During weeks 2 and 3 post transplant when the initial side effects were awful (they did get better!) I asked myself why did I do this, dialysis wasn’t this bad! Finally a PA told me, Everyone has trouble with the medications (which I wasn’t aware). One of my doctor told me the next week “Transplant is hard,” No one had ever clued me in or admitted to me that it would be. Then it got better and I’ve never looked back.
The first year is hard. Everyone said that once I was still complaining about that small things kept popping up. It didn’t seem like it would ever get better but they were right, it did. Now at 19 months, I can stop worrying about my kidney failing, and most of the side effects are under control - and I’m taking the weight loss drug which helps, blood pressure is still but but not as high.
I’m sure it is really scary going willingly from “I feel OK” to major surgery and taking a lot of drugs. Trust that in the long run you will see you have made the right decision.
Know that I am speaking for the majority of transplant recipients. There are a smaller number of people who don’t get much better and are plagued with medical issues and disappointment.
Transplant is the hardest thing you will ever do, but the reward is life itself. A longer, healthier, better quality of life than if you did not have one.
I hope that you do go ahead with this, especially having a living donor. Trust your doctors. Mine didn’t tell me I was a 2/6 match before surgery, which I admit freaked me out a bit hearing it but I would have done it anyway I was desperate for a new kidney.
However, it is everyone’s own choice to make. No one should pressure you into it. I only offer my own experience and my hope for you to have a better life than you will on dialysis.
I wish you the best of luck with your kidney journey, whatever you decide.
I had a transplant 2 years ago and my labs are all good.
what was your HLA match? Was it a 0/6? Have you had any issues? Have you had any side effects from the meds? Thanks for sharing. Best wishes.
0/6. I don’t know if they told me that on the initial call or anything because I was just so stunned. I asked about it last year when someone asked me. Nothing that isn’t expected, some thinning and falling out of hair, but it finally stopped. Also, with the prednisone, it will keep weight on, but exercise and eating plant base helps that and keeping good numbers. Thanks for the wishes. Best wishes to you also.
I know what you mean. They told me I was the "best" match for this donor one month ago. Despite my continually asking them for the specifics, they finally told me it was a 0/6 match just five days before the surgery is scheduled. I was expecting it to be much better based on how they presented it to me. Glad to hear things are going well for you. It gives me hope.
The HLA percent match is no longer considered as a significant risk factor of rejection. Modern an-rejection medications made that possible.
I had read about this and was just at my 6 month appt and confirmed this with the PA.
Crossmatch Test: Involves test tube mixing of the recipient’s blood with the potential donor’s blood to check for circulating antibodies in the blood plasma that could reject the donor’s organs.
I was a 0/6 match with my brother three years ago, and three arteries (unusual). On the three meds you spoke of but fairly low doses - pred 2.5 every other day. No issues with anything and doing fine. Wish you the best.
Thank you for sharing. I'm not sure what you mean by three arteries? Glad to hear you are doing fine. It's great to hear you can be on a low dose of prednisone with a 0/6 match. I hope I'm that lucky. You are very fortunate to have no issues. All the best to you.
Hi. I had my transplant on 11-8-2024. My niece was my donor. We were a 1/6 HLA match. I too was concerned but learned that most deceased donor matches were 0/6. I also talked with a genetics guy at the transplant lab and felt very comfortable after speaking with him. I did have another potential option where I would have been a minimum 3/6 match as it was my daughter, but she has young children and my niece is older and does not have children. My experience so far has been perfect. For the first time in 20 plus years, my renal labs are in normal ranges. My blood counts are back up in normal ranges. I feel great. I have had no side effects from the transplant drugs. Two weeks post transplant, my doctor said I looked two years post transplant. I couldn’t be more pleased……and my entire transplant team feels the same way! I personally would be comfortable with the 0/6 March for the reasons mentioned above. If you have time to look for another donor, I would try to find one. The better the match affects longevity of the life of the kidney I understand…..but it might be minimal according to my doctor. If you’re out of time, I wouldn’t hesitate!! Best wishes and good luck!!
Steph
Thank you so much. Congratulations on your transplant! It's great to hear how well you are doing. It gives me some confidence that I can have a good outcome too. All the best to you.
I had my Transplant in 2020 and I guess the lingo has changed as I never heard the expression "0/6", HLA, etc. Could anyone please explain those terms. Tks
They do three things to check if you are a good match with the donor. Your blood type has to be compatible , the crossmatch should be negative, and your HLA antigens (A, B, DR ) are compared to those of the donor. Each HLA antigen (A, B, DR ) has two alleles. A1, A2; B1, B2; DR1, DR2 ---> 3x2=6. The more alleles that match, the better. So, 0/6 HLA means none (zero) of the alleles matched between you and the donor.
When my living donor was in the process of getting tested for me, she was told that my center does not worry about hla for live donors. When a deceased donor becomes available, they match that organ as closely as possible to those waiting on the list, but since a live donor is usually meant for a specific person that is not possible. If you are unrelated it is not likely you will match, because you get three hla from Mom and three from dad. They had told my donor that we likely would not match at all, but they still consider it a match as long as the other testing, blood typing and cross match, came back good. The immunosuppressants used these days make that possible.
I think most of the time when you hear people say they were a "perfect match" with their unrelated donor, I don't think they are referring to hla, I think they are just saying the transplant center said the blood typing a cross match were good and no physical issues were going to be a problem. My center was shocked to find out my unrelated donor and I matched 3/6 so I don't think that's a common scenario when you are unrelated. If it helps, I was going to accept the kidney even if it were zero. My donor was the one who asked about the hla match.
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