Recipient's kidney is failing after eight years

[arballen]

It's been a long time since I've been on this board. I donated my right kidney at the Mayo Clinic in Phoenix in August 2005 to one of my cousins. After eight long years, it looks like this is the end for my kidney. My cousin has been ill on and off since the surgery, so I knew this would come sooner or later. She is hospitalized, and the doctors are trying to stabilize her so she can get on the transplant list again.

This may seem like a strange question, but I'm sure many of you who have been in a similar circumstance have more than likely thought the same thing. And maybe this was covered in a previous post that I didn't see while browsing.

Will the surgeons, when they remove the donated kidney, throw it away? (To answer my own question, I am almost positive the answer is yes.) Am I wrong to want to have that former piece of my body properly disposed of? I don't necessarily want them to ship it back to the East Coast (although it'd be pretty cool to actually see it). The thought of a piece of me being thrown in the trash just doesn't sit well with me. Do I have any rights?

Guidance is appreciated.

[poodles]

I'm so sorry this has happened. I know when's husband started to reject my kidney there were no words to describe how it felt. Luckily his docs were able to sort it out. His clinic was extremely helpful & supportive of him be there was no one I could turn to for advice.

This is a good question and probably quite a few people have thought of this but not taken it further. Suspect from a cost perspective you are in unlightly to be contacted about this.

The only thing I can think of is that certain Orthodox religions believe all of their body parts should be kept & eventually buried with them. One of my friends in the insurance business told me about this when she knew I was going to become a donor. Its amazing the conversations you have when people know of your plans to donate. So there is some sort of vague precedent for this type of situation.

[sherri]

Arballen,

I'm so sorry that you and your family are going through kidney failure once again. We are always so hopeful that transplant will last a long time and give our recipients a good quality of life. Unfortunately, it is hard to predict.

In terms of the transplanted kidney. From my experience, most transplant surgeons do not remove the non functioning transplanted donated kidney but rather leave it in place, very much like the native (ones you are born with) kidneys. Perhaps if there is an infection or if they kidney is bulky and pressing on something then they may remove it. If that is the plan perhaps you can discuss with the transplant coordinator if there is a way for you to participate in this as it is not just medical waste but a part of you. Often the transplant team considers donated organs like an artificial treatment instead of something that is part of someone else.

The decision to donate was not an easy one for me and I did have to think a lot about relinquishing part of myself. But once I did I came to terms with the fact that I gave my organ to someone else; I did not lend with any expectations of how it will be cared for or treated. That is hard to do. I always thought about it the same way someone decides for whatever reason to "give up' a child for adoption. We give a part of ourselves but we never really let go. I hope the knowledge that you did donate and help your cousin get 8 more years without dialysis brings you comfort. Hopefully someone else will be willing to "give up" part of themselves to give her a few more quality years.

All the best to you and your family,

Sherri

[Orchidlady]

Sorry to hear of this. Hopefully you can take comfort in that your love and care gave your cousin eight better years than they could have had. It was a gracious gift.


I know my brother recently had a bad experience with a piece of nail in his eye that required surgery. He asked the surgeon if they could save and give him the metal that they took out. The surgeon said that many people remember rin the past  how they used to give people their appendix, gall stones, etc that were removed, and a lot of them would be gilded or bronzed as "mementos" or jewelry. He said they save nothing nowadays due to the fear of infection.

[JustAPyper]

I agree with Sheri.  I think that they do not normally remove the non-functioning kidneys because they are attached to the circulatory system and doing so presents another potential for bleeding/blood loss during surgery.

[Fr Pat]

Dear "Arballen",
       I don't really know what the common practice is in such cases. But you might want to ask yourself if you would have the same concern over organs or tissues that were removed from you because of disease (e.g. your appendix, a diseased kidney, gall bladder, etc.) Would you be concerned about what they did with the removed part? I'm only asking because there is so much emotion and personal concern involved when we donate a kidney to someone that we might tend to look upon that organ in a different way than other body parts we may have lost. Perhaps your concern over the recipient's health and your sadness over the deterioration might influence the way you think of the donated kidney? I don't know if this thought is helpful or not, but I pass it along anyway.
     The gift you gave was (and is) a precious one, and that value and love cannot be lost. If you generously gave someone a used care because the person really needed one to get to work each day you would be happy if it was well used for some years, and not be too sad when it finally broke down beyond repair and had to be scrapped. Of course a donated part of our own body is NOT like a used car, but the love with which we give is the most important part.
   Fr. Pat

[donor99]

They only take the donor kidney out if they absolutely have to (its making the recipient sick...infection etc) removing the donor kidney makes the recipient sensitized (high antibodies and difficult to match). If they can they leave it in. Maybe they will leave it in.

[Karol]

Our daughter lost her transplanted kidney after 7 years. They would only remove it if there was inflammation or infection. I know someone who has 2 native kidneys and 2 transplanted kidneys.

[arballen]

Interesting info. I never would've thought that they would keep mine in my cousin's body. That makes perfect sense.

I think my experience and my personal reaction to these events have been colored by the fact that my cousin and I have an estranged relationship at the moment. We are only aware of one another's news through a mutual family member. My reaction is also coming from a sense that -- and I know this has been brought up in the media and in this donor forum -- that living donors are not followed medically and through studies to prove long-term consequences to organ donation. I'm 32 years old, 24 at the time of my surgery. I have a 2-year-old daughter and hope to have at least one more child in this life. I am not one to become attached to any object, so imagine my surprise when I'm suddenly very personally attached to my donated kidney.

I have come to feel that, because our bodies come with two kidneys, we have them for a specific reason -- to keep our body in balance. Taking one kidney out is a huge thing that I think Western medicine overlooks. I say this as I begin to learn more about Chinese medicine; did you know that the kidneys and its health determine the health of the entire body? Some may call me "out there" for even considering alternative methods of treatment, but I really do think that my body is out of balance.

Anyway, that's just me. I don't mean to criticize anyone. I do think organ donation is an honorable thing. I rarely tell people about what I did eight years ago. And to be honest, I don't think I would recommend it to anyone.

[Karol]

I wanted also to mention that for many patients there is a level of guilt and shame for losing the transplanted kidney, whether or not they are responsible for the rejection. Most of us are told that a transplant will last 20 years from a living donor, and it's quite crushing when it doesn't. I am sure there's a level of mourning and loss for the donor too.
Best wishes to you in the future, and your family.

[kali]

Arballun, Thank you for saying you would not recommend living donation becase I have been thinking the same thing due to similar concerns. If you find any interesting Chinese therapies, please share them!

[arballen]

Thanks, Karol. That is very kind of you.

And, Kali, I will definitely share any information that I learn about health imbalances due to one kidney through Chinese medicine. Acupuncture and qi gong are in my future....