Altruistic donor - positive crossmatch

[Mooge]

Hi everyone,

I've been lurking here for a few weeks, and appreciate all the information.

I am pretty deep into the (long!) process of becoming an altruistic donor. I live in Israel and things are done a bit differently over here - the donor is paired up with a recipient pretty early on, they meet each other and go through a lot of the process together. (The reasons have to do with National Health services like in the UK, and other considerations.)

I have had preliminary matches with a few recipients that didn't work out (mostly for medical reasons on their side) and now am matched with two women. The higher-priority woman showed "slight antibodies" in the crossmatch. The doctors decided it was appropriate to offer her the chance to do plasmapheresis and she has said she wants to.

I really do trust the doctors, but I have to admit to feeling slightly ambivalent about this. I have not yet met this woman, and I am wondering if perhaps my kidney is a bit more likely to be "wasted" in an unsuccessful transplant because of the antibodies. I suppose I could say no and ask to go on to the next recipient...but I don't know, this woman already went all the way to the end of the process with a donor who was disqualified at the last  minute, that must have been devastating for her....

Anyone here had plasmapheresis to defeat antibodies? Any experiences re success of transplant, or other thoughts on this?

Thanks.

[sherri]

Mooge,

I don't have a personal experience with plasmapheresis but I have seen several patients undergo the treatment post transplant when rejection sets in. I know at Johns Hopkins they have an incompatible program for recipients who are highly sensitized (most often due to previous transplants or blood transfusions) and they have had some success. You can google it on the web to see their information. You would have to research or ask the nephrologists and surgeons for statistics of success overall in this type of procedure as well as how they think this particular patient might do. I imagine they are beginning to do this in Israel. Not sure of the success rate at the particular hospital but that might be something you may want to inquire about.  If she is highly sensitized this may be the reason she is willing to accept the risk of the positive crossmatch.

One of the issues as donors we face, is always the possibility that our donated kidney will not yield a successful transplant. Many donors go through a period of grieving as a part of them was lost. Even depression can set in which may need to be treated. This may also happen if the recipient dies unexpectedly shortly after transplant. I am not sure how much emotional support you get from the transplant team but this may be something you would like to speak with a social worker or psychologist who is trained or at least familiar with before deciding to agree to the surgery. One thing I have learned is that we have so little control over outcomes even though we believe that if we do X then Y will happen. I'm sure you are familiar with the concept of "man plans, God laughs". There are no guarantees even in the perfect scenarios.

Wishing you a successful transplant journey and B'hatzlacha!

Sherri

[elephant]

Dear Mooge,

Sherri has given you some great advice! 

I didn't deal with a positive crossmatch either, but we all have to face the fear of uncertainty.  I concluded: "I'm not in the outcome business" and focused on getting through my part of the donation process.

You are doing something excellent.

Love, elephant.

[Mooge]

I appreciate the feedback. You are both right, of course. I don't really want to have any say in who gets my kidney and I guess I need to be able to let go of needing to be in control of the process....
Now if I could just get over my impatience over how incredibly slowly things are moving! I am a couple of months into this and still have a loooong way to go.
Thanks again for your input.

[Karol]

On the day before our daughter Jenna's first transplant (she was 21 years old) we were told that there was a positive crossmatch with a "mild B cell sensitivity" to her donor; but, if she were willing, the transplant team could give her plasmapheresis, IVIG and ATG to mitigate any antibody issues. This was done prior to the transplant and for 3 weeks afterward. Then, 3 years later, it was determined that she'd been in chronic rejection, not acute, as we had thought, as her function dropped to 20%. When we met with a tissue match specialist, who was curious about her 100% antibody level now, and explained about the treatments, his comment was "it didn't work." It's been nearly 7 years and her transplant is puttering out. She will need a new kidney, but has 100% immunity to the general population. Chances of her finding a donor on a one to one basis is virtually nil, so we are hoping that by joining a paired donation program, where she will be checked against 300 donors, she might get lucky. We would consider desensitization again, if there is absolutely no other option. That's because her life expectancy is longer with a transplant, rather than on dialysis. I know her donor does not feel as though her donation was wasted, because Jenna has had a wonderful, healthy life.
I do not know if Jenna's experience is unique or not, but wanted to post our experience.

[sherri]

Karol,

I know you and your family have been working hard to find Jenna a new kidney donor. My thoughts and prayers are with you and I hope she does gets matched soon. Although it is hindsight now, do you feel it would have been better to delay the transplant and look for a negative crossmatch or go into a paired exchange knowing that if the transplant was not successful it wasn't only that you start over again but that you start over again being much harder to match with a high PRA.

When talking with recipients they are often faced with making the difficult decision about accepting a particular donor, whether it be deceased offer or living donor. Some ask me, should I be willing to accept an expanded criteria donor? I usually offer that you could always be on the list for expanded criteria and then if an offer comes up you have opportunity to accept or reject any organ if you feel you would rather wait for a better match. I imagine though that at the time, you feel like the clock is ticking and are in a real quandary. I wonder is there enough guidance for recipients to help them weigh the options, the risks and the benefits or do hospitals want to go straight into transplant and try plasmepheresis and new antirejection drugs.

The transplant journey is never an easy one. It must be difficult to constantly be looking for that match for Jenna and I'm sure if you could, as a mom, you would give her both of your kidneys. Hope the match comes soon and in the meantime, I hope dialysis goes as well as it could.

Sherri

[Karol]

Hi Sherri,
Thanks for your comments. Sure, if they had said, "It might not work and she may develop high antibodies," then yes, we would have passed and kept looking. But 7 years ago, there was no paired exchange program anywhere close to the Western United States. It wasn't until 2009 when Steve Jobs went to another state for a liver transplant that people talked about traveling any real distance for a transplant.
I feel that the transplant team did the best they could with the tools they had. There is new information every day about the direction of kidney transplants. It's hard to know what to do. All you can be is well informed and, as my friend Susie always said, "Hope for the best and prepare for the worst."

[sloaner1982]

My recipient also has 100% antibodies because he had a "0" HLA match kidney and many blood transfusions from complications with his transplant.
As the donor, I have lasting emotional pain from my experience as a donor because I had not even been told that I was a "0" match with my recipient.
I would like to comment on what I felt like pre- donation. When some of you speak about what happens after donation to the kidney that the outcome is out of our control. Yes, that is true. But as a LIVING donor and I speak for myself here. If I am going to give up a kidney, I would hope that it would go to someone who has the best match for the greatest chances of a long term survival. With the need so great, I can not understand using a organ that is in such short supply for any transplant that would not have the best chances of success. What I mean by that- I would think that they would WANT to match the donor and recipient as close as they possibly can for the BEST CHANCES of a successful outcome. It is funny that you used the word wasted, as I had asked my surgeon before the transplant a question using those same words. There was some question about the size differences between myself and my recipient and I asked him what that meant. To be exact, I had asked, " what does that mean? Does that mean that my kidney will be wasted?" His reply, " NO, your kidney won't be wasted."  Don't get me wrong, I knew that there is always a chance of rejection. But, I did not want to go into something that had an INCREASED chance of becoming rejected. When transplant centers try all these new things they have now a days to make something work that should otherwise fail- It feels like to me that we are being used as live test subjects and they need our organs to test it out. I am hearing that some do work, others like mine are thrown in the trash. You need to really think hard about your expectations on the outcome. If it ends up being anything less than what you expect- it could leave you with lasting devastating emotional problems. I do know that it has for me.

[CK]

In my case, it was an ABO incompatible transplant (though I am A2, which is the new "O lite", as they say). My recipient had antibody titers of 1:16, which is the highest they will accept to consider an A2 to O transplant. He underwent plasmapheresis and IVG and all that stuff to lower it to 1:4 prior to the surgery to maximize the chance of success. After the surgery it went back up to 1:16 (as one would expect) and he has done fantastic over the last 1.5 years.

Don't assume that plasmapheresis means that it's a higher chance of failure. They can do so much now that antigen matches, heck, even blood type, doesn't matter anymore. My experience at least was that they did everything they could to ensure success and don't take chances they don't feel will be successful.

[Mooge]

The comments on this post have given me a lot of food for thought over the last couple of weeks, thanks to everyone. I think in the end I will just give it over to the medical team and take their best advice.
Finally have gotten some of the psych interviews scheduled for this Monday so things are moving again after having slowed down considerably for the last few weeks. Hopefully everything will continue to progress steadily.....

[elephant]

Dear Mooge,

I hope all goes well for your next round of testing.  Keep us updated.

Love, elephant