#51. Antigens and a national registry - April 2012

Yesterday I went in to see the transplant co-ordinator and signed papers to be in a national donor registry with the Canadian Blood Service.   This means that I might be set up to be part of a chain of donations that happens, sort of a domino effect.  The next meeting for that exchange is in June and they will talk about how they can best use my kidney.

The nurse also explained to me about antigens.  She showed me the printout about my blood and the type of antigens I have; they would need to try to give my kidney to someone who would not have a reaction to my antigens.

She also said that someone who has had a kidney transplant once, and rejected their transplant and is on the list again waiting for a transplant, would have a very long list of antigens, and so it is much harder to find someone who is compatible.

Even when on paper everything looks like the match will work, they will do a physical blood sample from the potential donor and the potential recipient to see what happens when the blood is mixed.

So right now I am waiting to hear how I can best donate my kidney to help the most people.

#50. Meeting a family - April 2012

I haven’t written very much lately because there is not too much to report.  I am still waiting to hear from the transplant office about a date for surgery.  I hope that it will be this summer.

In the meantime, today I had an interesting experience.  At a conference, someone who knew I was donating a kidney introduced me to someone else who she knew had donated a kidney.  I had lunch together with her and her husband.

This woman had donated her kidney to her adopted daughter around 5 years ago in an American hospital.  Her daughter had a kidney transplant as a young woman, and it had lasted for around ten years.  But then it failed and she went on dialysis.  Unfortunately, it took a really long time to find a donor for her, because she had a lot of antibodies.  She was on dialysis for twelve years.  “But her health suffered from being on dialysis, she still has health effects from being on dialysis that long,” her mother told me.

The mother was willing to donate, it’s just that she was not a match for her adopted daughter.  In this situation, an anonymous donor came forward, who happened to be a match for her daughter.  It started a chain with five pairs of donors/recipients, with all the operations happening in one hospital in one day.

The woman told me that within a few weeks she could almost forget that she had donated a kidney, her life has been entirely normal.  And of course she was able to help save her daughter’s life.

This couple was so excited that I was donating a kidney.  “I just think it’s a wonderful thing what you’re doing,” the husband said to me as he squeezed my hand as we parted. 

It was neat seeing how an anonymous donor can possibly impact a whole family.

#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.

#43. Life on dialysis -- February 2012

I ran into an old college friend this past week.  It’s always nice to see him, but I was particularly interested to talk to him because I know that a few years ago he received a kidney transplant.  I asked him what his life had been like on dialysis. 

First he said it was like being chained.  You had to spend hours and hours in the dialysis unit each week having your blood cleaned.  You couldn’t get away from it, it was a huge chunk of his life every week.  Second, he said you never felt very well.  Dialysis is not health, it’s survival. As your body gradually builds up toxins in the blood, you start to feel unwell.  You need the dialysis to clean your blood.  You also have to be extremely careful about what you eat or drink, fluids are very restricted because basically you don’t pee anymore.  Anything you drink has to be filtered out of your body by dialysis.  He talked about how frustrating that is on a hot summer day, not to be able to drink a big glass of water.  But more difficult is just not feeling good.

The biggest thing he talked about was the uncertainty that most dialysis patients face.  How long will my health last with this?  Will I get a transplant?  Will I stay healthy enough to be able to receive a transplant? 

He was so glad that his brother was able to donate a kidney.  When I told him I was working towards being a kidney donor, he was very affirming saying, “You will make a big difference in someone’s life.” 

#42. The Psychiatrist Appointment - February 2012

The same day I had the CT scan, I also saw a psychiatrist.  They want to make sure that I am of sound mind as I make this decision to donate. The appointment was pretty short, just over half an hour.  The psychiatrist was very pleasant, asking me some questions about myself that I have already answered a half a dozen times before about my health and family situation.  It appeared he had read previous charts because he knew some things about me already.  

Mostly the questions centred around my mental health, and whether I have had problems in the past with mental illness, depression, anxiety, intrusive thoughts, or had problems with alcohol or other drugs.  And then some questions about why I want to donate.  He asked me how I would feel if my kidney was rejected by the recipient; I said of course it would be disappointing to find that out, but that in my situation I likely never would find that out.  I explained how some psychological challenges are avoided by being an undesignated donor.  He commented, “It looks like you have thought about this a lot.” 

It was a pleasant conversation, everything was pretty easy to answer, and at the end of our time together he said he didn’t see any reasons why I should not be a donor.  So one more appointment down. 

I still need to see a haematologist (because my mother had some blood clotting problems), and the urologist who will do the surgery.  After all the appointments are complete, I will meet with the nephrologist again and he will outline the ways I can donate my kidney; the different options as to who would receive it, either a direct one to one donation, or a domino sort of donation through the national registry.

#41. The Inside Story - February 2012

Yesterday I went for a CT scan.  It was an interesting experience, as I have known people who have had them, but never had one myself.  I couldn’t drink anything for a few hours before.  I got there and they explained everything that would happen and how it would work.  They need to take internal pictures of me so that they can see a number for things.  First, to see if I do have two kidneys.  Sometimes people who want to donate find out they only have one kidney, they were just born that way.  Second, the CT scan allows them to see which kidney they should take and which they should leave, and it helps them determine how it will be transplanted.

After explaining everything they gave me two big glasses of water to drink, which I had to finish in ten minutes.  They also put a little portal in my arm, to give me something intravenously later.  Then they brought me into a room with the big donut shaped machine, and I lay on a table.   The table slid me (at least the torso part of me), into the machine, and it took some measurements.  Then the nurse or technician, or whatever her title was, injected an iodine based dye into my arm.  She told me I might feel a warm sensation, or a feeling like I was peeing, or a metallic taste in my mouth; these are all normal feelings as the dye goes through my body.  Then they immediately slid me into the machine again.  Within a few heartbeats of the injection, I felt a warm sensation, a metallic taste in my mouth and a feeling like I was peeing!  So three for three. Then I was told to hold by breath, I heard the machine whirring and it was taking a picture. Then they had me hold my breath again and they took another picture.  And that was it.  They had me wait around for five minutes, to make sure I did not have an allergic reaction to the dye, and then I was free to go, after they took the little portal out of my arm.

When I see my surgeon I can ask to see the catscan. I want to do that, I would like to see what I look like on the inside!

#40. Fear - February 2012

The other day I had a brief flashback to what it felt like when my husband was going through his cancer treatments.  These days, I don’t think about cancer all the time; it’s something that only pops up every couple of days.  The thought of cancer used to grip me by the throat and shake me.  It’s hard to live that way, but when someone you love is facing suffering and death, you can’t avoid it.  I’m so glad we’ve walked through those times to a different space.

But those times are a part of us now. We have survived, but we can’t forget. When I think about donating a kidney, what motivates me is thinking that someone somewhere has this kind of fear in their life, whether it’s for themselves or their loved one, their beloved son or daughter, their mother or father.  Will dialysis be effective?  Will it be death by kidney failure?

I can’t think of anything I would rather do in life than help alleviate that type of fear, by offering someone a new hope, a new chance at health. 

Do I have fear about the surgery?  Yes, here and there I have twinges, but honestly it’s nothing compared to the type of fear I’ve felt before with the unknown factors of a life-threatening disease.  Donating a kidney is not a disease, it’s something you do because you are very healthy, and then you recover from the operation.  It’s just not that scary.

#39. A big gift - January 2012

Whenever you go to a big hospital there are things named after people.  This wing is the “So and So memorial wing” or that tower is the “So and so Family Tower”.  There are generous people who have donated lots of money. 

When my husband had to go to the Juravinski Centre, a local cancer treatment centre, to have our first meeting with the oncologist, I was amazed by the building.   The beauty of the architecture really did help in a difficult time.  I think the beauty of the building, the attention to details, gave us  the feeling of being cared for, the feeling that someone had cared enough to try and make this terrible experience you were going through just a little bit more pleasant. 

If I had millions of dollars, I would definitely donate money to hospitals.  But, having reached the age of 50 and having not broken into the millionaire range yet, I think statistically it is not likely that any hospital will be the beneficiary of my millions. 

But what can I give?  I read in a Globe and Mail article that dialysis for one person for one year costs the medical system $60,000.  So if someone is on dialysis for 20 years, that might cost $1,200,000.  If I donate a kidney, they don’t have to be on dialysis.  So maybe I can donate a million dollars.  A million dollar kidney sounds good to me! 

Of course, it could be my kidney would be rejected in a few weeks or months. There are no guarantees in life.  Here is the article where I read that statistic about what dialysis costs:

http://www.theglobeandmail.com/life/health/transplant-waiting-lists-and-dialysis-costs-grow-as-kidney-supply-lags-behind/article1878019/

#38. A gift - January 2012

Doctors and nurses and the whole medical establishment are a gift to us, because they try and help us live.   Not everyone has access to medicine and hospitals.

When my husband was so sick, and we were worried he was dying, I read a remarkable book by Stephanie Nolan, a Globe and Mail reporter, called “28:  Stories of AIDS in Africa”.  It tells the stories of 28 people who were living with HIV.  It may seem like a very depressing book to read when you are grappling with cancer, but actually it was one of the most hopeful books I’ve ever read.  Nolen relates the remarkable courage of individuals in Africa who face hard health crises, in the face of very very little access to medicine and health care.  28 million people have HIV in Africa.  Somehow the book reminded me that sickness is not some strange anomaly in human life, but a very common human condition. 

I try to be thankful for what I’ve been given (remarkably good health and easy access to excellent health care).   And I try to feel compassion for people who, through no fault of their own, are facing difficult times.  

#37. Stranger is cleaner - January 2012

As I’ve thought about it, in some ways it might be easier to donate to a total stranger, than to an acquaintance.  I don’t know the situation of the person who will get my kidney, or anything at all about their life.  If they were an acquaintance, I might look at other people in their life, and ask, “Why aren’t they testing to be a donor?” 

Or maybe I might be judgemental about health decisions they make; are they living a good lifestyle? If they aren’t making health choices I approve of, maybe I would be reluctant to give them a kidney. For example, if they don’t exercise, or they drink a lot, or they smoke, it might give me pause as to whether I want to donate to them.  Would they care for my kidney the way I have cared for my body?

Or if I knew them, I might ask about the kind of life they are living.  Are they a kind and loving person, who people will miss?  Or are they a stingy, mean person that no one seems to care about?  It would be hard to give a kidney to someone who was very unpleasant to be around.

But a life is a life.  Doctors and nurses face this all the time.  They have to set aside all personal prejudices or value judgements about the way a person is living, and just try to save them. 

In some ways, not knowing the person, makes it easier to donate because it’s cleaner.  It’s a life.  What kind of life is it?  I have no idea, and maybe that’s best.  It’s a life, and that’s all I need to know.

#36. Extending the circle - January 2012

I am starting to tell a few more people about this kidney donation journey, and there are varying reactions.  I wonder if the reactions would be more consistent if I said I was donating my kidney to my daughter or to my son.  I really don’t think anyone would blink an eye, if I was doing that.  I can’t think of any parent I know who would not do that for their son or daughter or spouse.  The reaction comes because I am doing it for a stranger, someone I have not met.

I belong to a church community that is pretty small…we have around 70 or 80 people who attend each Sunday, but probably an extended community of 100-120 if you include people who are away at school or attend only occasionally.  People know each other pretty well.  If someone in our church had kidney disease, and no one in their family was a match for them, and we saw them getting sicker and sicker waiting for a transplant…I think there are people in our church who would get tested to see if they might be a match.  I think we would extend the “family circle” to include the “church family”.

I suppose the next level would be whether or not you would extend the circle to a co-worker or neighbour or acquaintance. Perhaps it would depend on the circumstances.  Does their situation stir up compassion in you?  For example, are they caring for or providing for children who might be orphaned?  Or maybe it has to do with their character, are they a fine person, have they done a lot for others?  Maybe it has to do with their story, and the poignancy of hearing how everyone they know has been tested and no one is a match.  Maybe it has to do with seeing them getting sicker and sicker.  Or maybe it boils down to, “Do you like them?  Do you like them enough to save their life?” 

The problem is that the wider the circle gets, the less responsibility you might feel to help.  “Someone else should do this…not me!”  “Certainly they have an extended family member who could donate…not me!”    “Someone who is closer should come forward to be a donor…not me!” 

But that’s the same reasoning we use about anything!  Why should I give money to feed starving people in Africa…someone closer to them should help!  Why should I care about anyone I don’t know?  If I was starving, I would want people I don’t know to care about me!

#35. Birthday - December 2011

Today I celebrated my 51^st birthday! This is a bittersweet birthday for me. My dad died in his 51^st year of cancer. My mother died when she was 34 of complications from having her appendix removed. So if I make it through this year I will have outlived both my parents. I have thought about this a lot. While I  have aspirations to be an old woman, I don’t take it as a given that I will get there. I think it has to do with having parents that died young.

 I knew a man once who was dying at the age of 83. He was surprised and angry that he was dying, he had always assumed that he would live to be 96 like his dad. He told me that he felt he was being cheated out of 13 years--that he’d been shortchanged. I could relate to that; I think I would probably feel the same way if both my parents were long-lived.

But seeing my father grappling with the premature ending of his life had a big effect on me. I don’t want to leave things for the end of my life, because you never know when the end of your life might be. Given that life can be short and unpredictable, what do I want my life to be like?  

#34. Immeasurable - December 2011

I had a talk with the transplant co-ordinator about timing; I don’t think it will work for me to donate in February.  I still need three appointments (catscan, psychiatrist, surgeon) and they can’t schedule the surgery until those appointments are completed.  I need to have a surgery date well in advance so that I can book the time off of work.  So I am probably looking at a June or July date for surgery.

 My husband told me to look in today’s local paper at an obituary.  It was an obituary for a man who died of kidney disease at the age of 67.  A lot of the obituary was what you would expect; beloved husband and friend, lovingly remembered by all sorts of different relatives, the career he enjoyed and where he worked.  The final sentences of the obituary grabbed my attention in a special way: 

“The last 32 years of Paul’s life were a genuine gift made possible by the generous donation of a kidney transplant from an anonymous donor.  This allowed him to enjoy a fulfilling family life with his children and grandchildren.” 

32 years!  How can you measure that?

#33. A riveting documentary - Dec. 2011

Today my husband told me there was a documentary about kidney donation on TV. I watched it and it was riveting. It’s called “The Market” and follows two parallel stories. There is the story in India, of poor women who sell their kidneys to make money to pay their debts. And there is the story of a woman on dialysis in British Columbia who is waiting for a kidney transplant. Her family is encouraging her to think of going to India, to buy a kidney to be transplanted. The stories come together as the woman from Canada goes with her family to talk to women in India who have sold their kidneys.

I am still processing this documentary. I watched with grim fascination as these Indian women tried to help their families by selling a piece of their body, and the emotional and physical pain they suffered. What kind of a world do we live in, where people need to sell organs to send their children to school?  And I watched this from the context of being a rich person, in a rich country, who is freely making the decision to donate. My donation is entirely divorced from money; I have that luxury, a luxury that those women can only dream of.

And I was very moved by the story of the woman from British Columbia, whose peritoneal dialysis is so intensive and time-consuming. She and her family live with the insecurity of poor health, and the realistic fear that this type of dialysis will someday fail and she will die. Getting a kidney donation is the key to a new life for her.

Seeing this documentary has opened up the bigger picture for me about how kidney donation plays out around our world, and how financial inequality skews the system in favour of us, the rich nations. It also gave me a bit of a peek into life on dialysis. It solidifies even further my decision to be a kidney donor.

This 2011 documentary is directed by Canadian Rama Rau, and you can watch it here:

http://ww3.tvo.org/video/167026/market

#32. Friends - Dec 2011

Over brunch today, I talked to some friends about my decision to try to be a kidney donor. They had some questions, but they were very supportive. They asked, “If you ever find that you have kidney disease, would you be put to the top of the list to receive a kidney transplant because you volunteered one of your kidneys?” I said that that wasn’t the way it works. My friend immediately said, “Well, Carol, if you ever need a kidney, I will give you one of mine!”  She was laughing when she said it, but I know a lot of people, I have a hunch that one of them might try and be a kidney donor for me if none of my family members were a match.

I also explained to them that I think I am a good age to be a kidney donor. I’ve lived this far in life without kidney disease, and I’m still healthy enough to be a donor. I am not sure how I would feel about it if my daughter, who is 21, wanted to be a donor to a stranger. I would have to think about that one. When I think about her being a donor, suddenly I see myself taking the position that my sister had towards me, “I don’t want you to compromise your health in any way!”  I would support that decision if she wanted to make it, but I would rather she made it later in life!