Phantom Kidney

I don’t like to write or talk about this topic.  For 2 very conflicting reasons.  One: I don’t want people to think that I think donating a kidney was a big deal.  I don’t.  For me, it’s pretty much on par with donating blood.  I was physically able, someone needed it, so I did it.  End of story.  Two:  I worry that saying it’s not a big deal is diminishing what it means for my recipient.  She may not think of it the same way I do, and in reality, this is her story.  I’m just a player in it.  That said, my vulnerable post from last week opened me up to writing about the things that might make me uncomfortable.  So, after writing pieces of this post in my head for 3 days, I decided to finally get it down in print.

This post has nothing to do with my decision to donate, the surgery itself, or the recovery.  So, if you’re looking for details on that, you can talk to me about it.  But honestly, in past experiences, I haven’t been a fountain of information on that topic.  Again, it’s weird to talk about.

No, this post has more to do with my life after the surgery and how and why certain things affect me.  So, here goes:

One of the biggest questions I get about my surgery (usually from people I haven’t seen in a really long time) is, “So, what’s different since your surgery?”  Do I need to have a different diet, do I feel different, are there things I can’t do, can I drink alcohol?  To which I respond: Nothing is different.  I eat just as badly as I did before, I drink alcohol exactly as I did before (which isn’t too often), and the only things I can’t do now are contact sports and skydiving (I’m pretty ok with that).  I tell people that the recovery was painful, and for a while, I could feel the muscles underneath my incision healing and it hurt A LOT, but now, almost three years later, my life is exactly the same as it was before.

Except, realistically, I guess it’s not.

Right after the surgery, my recipient got really sick.  I don’t really remember the details and I probably didn’t know many of them before, but we had connected with her and her friends in the hospital, so I did have contact with them and was aware of the complications she was having.  She had a fever, she was in a lot of pain, I believe there was talk of an infection, but I honestly don’t remember.  But, what I do remember is the VERY complicated and confusing emotions I was feeling.  As a doctor, I imagine you feel responsible for your patients.  However, if the surgery goes smoothly and you did everything correctly, medically speaking, you can tell yourself that things happen and no one can control them (although I’m sure that’s still challenging).  But, when a part of you is inside someone else and it looks like it might be failing, how are you supposed to feel?  There’s no handbook for people who don’t donate to a friend or family member.  I remember after the surgery, I imagined a community of people online who had donated to a stranger and how we could connect and talk about our emotions with the surgery and our emotions about our recipients.  I assure you, after hours of searching, there is no such thing.  Even before my surgery, the hospital connected me with a woman who had donated her kidney so we could talk about what I could expect and how the recovery would go.  But, she had donated to her husband.  So, while all of the physical stuff was helpful, the emotional stuff didn’t really apply.  Am I allowed to feel guilty if my recipient gets sick?  With a family member, you can take them to doctors’ appointments, take care of them when they’re feeling bad.  But, with a stranger, you just kind of watch it from the sidelines. 

I’ve been VERY lucky in that my recipient has been very healthy for the last few years.  So, for the most part, I can go on with my life as if nothing happened.  But, before the surgery, I was told that she will most likely need another kidney transplant in her lifetime.  Meaning, mine will start to fail at some point.  In the couple of times that she’s been sick since the surgery, I’ve had very complicated feelings.  My first feeling is how I feel if a friend is sick.  I want her to be healthy because I like her and she deserves to feel good.  But, then I quickly feel guilty.  If she had someone else’s kidney, would this be happening?  Is there something I forgot to tell the doctors about my health that makes my kidney bad?  (The screening is really, freaking thorough, so this is incredibly unlikely, but still a thought I have).  Now when I think about how I want her to be healthy and pray for her good health, I second guess my motives.  Do I want her to be healthy because I care for her and good health is good for everyone you care for or do I want her to be healthy to ease my guilt?  And, if I’m thinking positive thoughts for her and pray for her, do my motives really matter?  Can I control my thoughts and feelings anyway? 

Living donations don’t work for just any organ, so the number of living donors is already a small group.  The number of living donors for someone other than a family member or friend is even smaller.  But, I imagine that those who do have similar qualities and personalities.  Meaning, that my reactions to the health of my recipient may be very common for someone in my position.  I just wish I could find some of those people so I could see if I’m a weirdo among our little weirdo group, or if it’s our weirdo tendencies that cause us to have the surgery in the first place. 

I’m not totally sure what the point of this post was.  Getting my thoughts and feelings out doesn’t make me feel less confused about them.  I guess I would like it if someone was searching for a kindred spirit online that they would find this post instead of the quick little blurbs that are currently the only online presence for anonymous living donors that say things like “I feel great!  I would do it again if I could!” or “I can’t give much, but I can give this!”  Because, those just aren’t helpful.  So, if anyone reading this knows of anyone who was in a similar situation as me, I would love to connect with them!  Until then, I’ll just feel confused and emotional every so often, but very thankful for the good health of the current owner of my kidney.