#49. The designated recipient - March 2012

Lately I’ve been thinking a lot about the person who will receive my kidney.  What are their thoughts and feelings as they live with kidney disease?  They will get the call that they are going to receive a transplant, from a live donor. How will that affect them?

They will  know that the person donating the kidney is an undesignated donor.  They will know that somewhere in this community there is someone who will have an operation and give a piece of themselves to save an unknown person’s life.  That is the type of community they are living in, a community where we save each other’s lives. 

Maybe the person with kidney disease has parents, or children or a partner who are not a match, who would try to save their loved one’s life, but they can’t.  What will it mean to them that someone they don’t know is willing to make a gift like this?

Maybe this person will think that.  Or maybe they won’t .  Maybe they are mad at the world because they’ve been given such a hard road to travel, a rough road with kidney disease.   Maybe they will just feel relieved.  Maybe they won’t think very much about the person who gave them a kidney.  There are angry, ungrateful people in the world.  I’ve been an angry, ungrateful person sometimes.

#48. So much joy - March 2012

I can’t think of many things in my life that have brought me as much satisfaction as this journey to be a kidney donor. 

I remember when I was pregnant, I would sit and put my hand on my belly and just feel the new life inside in me. I could sit that way for ages, just feeling the baby.

I kind of feel that way now, as I think about donating my kidney.  I know that I am giving health to someone, or at least a good chance at health.  I am going to change their life in a major way, improve their quality of life.  My mind wanders to it during the day and I pause and think about it, and it is a joyful feeling, that I can help someone.

And in the meantime, as I start to tell people this, they keep talking to me about what a good thing this is, and what a sacrifice it is, and what  a nice person I am.  On the whole, I am getting so much positive feedback it is frankly a bit embarrassing. 

The sacrifice part is coming yet; I haven’t had the operation, or lived with the risk, or started living with one kidney.  It’s sort of like being pregnant…I loved feeling the baby inside me, but the baby did have to come out at some point, and that was painful.  I haven’t faced the labour part of the kidney donation.

But then the comparison between giving birth and kidney donation breaks down because labour was such an unknown thing, and I was worried as to whether I would do a good job. Giving birth is very much of an effort, a time of concentrated hard and painful work. Kidney donation is so much more passive; I just lay there and they wheel me in, put me to sleep, and they do all the work.  The labour comes in having to deal with the pain and the scars and the healing time.   

But then the analogy works again.  Having a beautiful baby in the world makes the bleeding and the pain bearable, it’s all worthwhile.  In the same way, knowing that somewhere in the hospital somebody’s body is starting to be healthy again, someone is starting to be able to pee again probably after years of not peeing, and they are starting to be able to feel better and have freedom…what is a few days of pain in comparison to that?

#47. Are you my kidney recipient? March 2012

There was a story I used to read my kids about a little robin that is looking for its mother.  He goes from animal to animal in his neighbourhood saying, “Are you my mother? are you my mother?” 

I’ve been thinking lately about the person who is going to receive my kidney.  I won’t know who it is, but someone, likely someone in this area, will be walking around with my kidney in them.

Maybe I will stand next to them in line at the grocery store.  Maybe they will be driving the car that cuts me off on the highway.  Maybe they are the person walking down the street ahead of me.  Or maybe they will be sitting next to me in the movie theatre.  They will be there, somewhere, a piece of me in them.  I won’t know where I am. 

Theoretically, we should treat everyone with kindness and respect.  But I think I would inherently be a bit more kind or more respectful to someone who was carrying one of my organs.  I would certainly be more interested in their welfare. 

How will being a donor change how I look at strangers?

#46. The blood doctor - March 2012

I had my appointment with the hematologist, the last appointment on the list!  It was a pretty short appointment, around 15 minutes long.  It was mostly a list of questions asking about everyone I’m related to, and whether or not they have had problems with blood clots.

The reason I was having this appointment was because my mother died of a blood clot, a pulmonary embolism that went to her lung.  She was recovering in the hospital after having her appendix out, and then just suddenly died.  This was in 1965.

The doctor said that what they are looking for is whether there is a family pattern of blood clots, because that is the best predictor of whether or not I am at risk for getting a blood clot.  Given that I have enough relatives who have never had any of these problems, he said that he is confident I am not a high risk to have a blood clot.  “The fact that your mother had a blood clot is tragic, but frankly, it’s not unexpected.  In the 1960’s they used to keep people lying in bed after surgeries, which was the way blood clots got started.  And they didn’t have the medication we have now to help prevent them.  Dying of blood clots after surgery was a lot more common then.”

So he gave me the green light for being a kidney donor. As I was leaving, he also commented on the fact that I am an undesignated donor, “On behalf of the medical system, I just want to say thank you for what you are doing, it’s a big thing for you to do, and it’s really cool.”

#45. The Surgeon - March 2012

It was good seeing the surgeon again, I hadn’t seen him for almost four years, since the night he came to talk to me in the waiting room after removing my husband’s kidney.  Even though we went through such a difficult period with the cancer, seeing the doctor was always a reassuring experience, and I have always felt good about him.

He remembered me, and inquired about my husband’s health, which is great, which makes everyone happy!  He talked to me about my kidney donation, “Why do you want to do this?”  I told him about wanting to help someone, and how the experience of almost losing a loved one makes me feel for the people who are waiting for transplants.  And that I hope I could save a life.  He was very definite in his response, “You definitely are saving a life.  I am so proud of you for making this decision!” 

I told him that when I tell people about donating, they are so scared for me doing this, but that for me, donation just isn’t that scary a process.  This is not an illness, I am healthy, I’ll donate, and I’ll recover.  He nodded…I know he understands. He’s had enough scared-to- pieces people in his office facing cancer diagnoses.  This is very different. 

He talked a bit about the surgery, looked at my CT scan, my abdomen, asked a few questions. “Do you know,” he said, “studies have shown that people who donate kidneys live five years longer than average. Life insurance companies did the studies, they wanted to see if there were risks, whether people should pay more for premiums.  But they found that kidney donors live longer than other people!”  

I laughed at that surprising statistic, “They should lower our insurance rates then!” and we both laughed because we know that would never happen!

I had to sign some papers, and then we were finished.  “It’s a great thing you are doing. We will take such good care of you.”  We both left smiling!

I’m writing all about the way people affirm this donation I’m doing not to try to get you the reader to feel a certain way about me, or because I want people to hear all the nice things people say about me.  I’m including this in case you are thinking about donating a kidney yourself.  Hearing an honest account of how people reacted to me, may prepare you or encourage you to do the same.

#44. The Resident - March 2012

Finally the day came where I was going to meet my surgeon.  I had to wait for half an hour before I was called in to see him; I was prepared to wait quite a bit longer, as I know how busy they are.   They happened to put me in the same room I had been in when my husband and I were waiting to have a consult about Temsirolimus treatment for my husband’s kidney cancer.   It was an interesting thing being in that room, remembering that.  Sobering.  It brought back a lot of that uncertainty and fear, just being there.  A sober place to reflect and be thankful that I am just remembering those hard times, we aren’t in that place anymore.

The resident doctor came in first.  He sat down, opening my chart, obviously scanning it quickly to figure out what I was there for.  “You want to donate a kidney,”  he observed, as he started reading.  “To someone you don’t know!” he added with surprise in his voice.  “If you don’t mind me asking,” he said, looking up, “why are you doing that?” I explained, and he said “Great. That’s great.” 

He answered a lot of my questions. How long is the operation?  Three hours.  How long will I be in the hospital?  Three to four days.  How do they tie off or sew shut the blood vessels when they remove the kidney?  Staples.  Which kidney will they take?  Usually the left one, because it has a longer blood vessel which can be used for the transplant.  Where will my incision be?  Right below the belly button, with a few tiny ones on the side to let in the camera and instruments.  How long should I stay off work?  Three to four weeks. 

He had a few health questions, looked briefly at my abdomen, and then he was done. I asked if I could see my CT scan.  “Sure, no problem!”  He pulled it up on the computer and showed me my kidneys.  That was interesting, I’ve never had such a clear view of my inner life before!  I was surprised how big my liver was.  I guess I don’t give much thought to my liver.  Always thinking about kidneys lately I guess!

I asked him if he would be helping with the surgery, and he said, “Probably not,”  explaining that there are a variety of residents at different levels, and one of the more senior residents would probably assist with that.  My surgeon has a whole team of people working with him.  The part with the resident took about 15 minutes.