#35. Birthday - December 2011

Today I celebrated my 51st birthday! This is a bittersweet birthday for me. My dad died in his 51st 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:

#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!

#31. Very accommodating - Dec. 2011

I phoned someone at the transplant office today about scheduling. I explained my schedule in the spring, and they assured me that a late January, early February date should work no problem. They will make sure to slot me in on a day that the doctor I want has surgery time. They were very accommodating, “Whatever will fit your schedule…” She assured me that it will be no problem to schedule all the remaining tests I need in January.

So I guess I can start telling more people about this now. I also decided to post these entries on-line. I set up a blog on Blogger, and called it “An undesignated donor”. When I started looking into this, I tried to search for blogs of people, and I did find some accounts of people who donated to someone they know. But I felt the story was often very brief, and didn’t get into all the feelings or experiences they went through. So I hope this blog can be a more complete outline of what it is like to donate; specifically for those who donate to someone they don’t know.

I also realized as I set up this blog that people might be reading this from the United States or other countries. FYI, in Canada we have universal health insurance, which is paid for by our taxes.  The Ontario Health Insurance Program (OHIP) covers almost all of our medical expenses. In terms of being a kidney donor, I’ve had all these tests and I have not paid for one thing, it is all covered by our government health plan. 

#30. Fifty years of good health - Dec. 2011

I was thinking today about when the transplant doctor was asking for my medical history, and he asked me “What sorts of health problems have you faced in your life?”  And I paused, and thought, and then I said, “None!”  I do have a thyroid deficiency and I take a pill every day for that, but I’ve had no ill effects from that. I never even had any symptoms, it was just something my family doctor picked up in a regular blood test.

I have led a remarkably healthy life. Fifty years and I’ve never been in the hospital (except to have my tonsils out as a kid, and to give birth), never broken anything, never injured myself, never been seriously sick. What an amazing gift that has been. I don’t know if I have been thankful enough for that. Certainly when my husband got cancer three years ago, I thought a lot about his health, and about life in general, and the importance of health.

The really neat thing is that here I have gotten this great gift of good health, and I am being given a way to share that with someone else. I can give my healthy kidney to someone and give them a chance to be healthy, my healthy kidney in their body making them healthy. It really is mind-bogglingly neat!

And the only reason this can happen is because there is a whole team of professionals who have studied and worked for years so they know how to do this safely and effectively. When we work together, me giving a piece my body, them giving their skills and expertise, we can do this. This is just about the neatest thing I’ve ever done. I can’t wait!

#29. WWJD? - Dec. 2011

I was facebooking a good friend the other day, and I chatted with her that I was being tested to be a kidney donor. She was very surprised, but she wrote, “I have thought of doing that, but I`ve never done anything about it.”  That`s exactly my hunch, I think there are a lot of people out there who would entertain this possibility, they just need to be given the opportunity to think more about it, and see or read about people who are being undesignated donors. Even something as simple as explaining that donation can be done through laproscopic surgery, rather than a more traditional larger incision, is a huge thing, it makes the recovery time so much quicker (and less painful).

My friend also joking wrote, WWJD?, which in evangelical Christian circles is the popular acronym for the phrase “What would Jesus do?”  It`s sort of an ethical shorthand, trying to put yourself in Jesus’ shoes as you make everyday decisions. Except my friend said, “WWJD? What would Jesus donate?”   Which is a funny take on it, but one with a twist. Because of course Jesus donated his whole body to the world. "This is my body, broken for you", those are the words that are often used in communion services. 

#28. A busy schedule - Dec. 2011

One of the things I asked the doctor was how long I should be off work after this surgery. He said it takes six weeks to recover. I told him my husband went back to work after two weeks. He manages a tree nursery, and it’s not like he was immediately jumping up and down off tractors, but he did get involved at work and tell people what to do. And he came home and rested every day at lunch. I’m a minister; it’s not like my job is physically strenuous.  He said, “Well, maybe farmers and ministers go back after two weeks, but your body will still be recovering for six to eight weeks whether you are at home or at work.” 

They are very open to finding a time that suits my life to do the donation. The tricky thing for me is that I might be going on a trip in May to Israel, a trip that will involve some strenuous hiking. So I would want to be sure to be entirely recovered before May, which would mean I would need the transplant within two months. That might not be possible, with all the tests that need to get done yet. Otherwise, I could wait till June, which is not quite as good a time for my family.  My husband is not as busy as in spring, but February would be better. And then there is work to consider; I don’t want to have the transplant close to a busy time like Easter. 

I have to talk to the people at work about this soon. I am going to request a leave of absence; I don’t assume that they will give me the time with pay; I am choosing this, it’s not like a regular sickness.

#27. A good talk - Dec. 2011

I felt good about the talk with the nephrologist. I felt I had a better sense of what is involved, and how it happens. He explained different things I wanted to know, like how they figure out whether a kidney will match up.

I explained to him why I was being a kidney donor, and how this came out of my husband’s experience with kidney cancer.  I explained that I wanted the same surgeon my husband had. I told him, “Hopefully nothing will go wrong, but if something does, it’s going to be easier for us to handle, for my husband to handle especially, if it is the same doctor that saved his life. I know all the surgeons are good, but we have a relationship with that surgeon.”  “That’s very interesting,” he said, smiling, “I’ve never come across that reasoning before, but it makes perfect sense.” 

He was a very congenial doctor; at the end, he shook my hand and said how gratifying it was to meet me. He said, “It’s so good to see how you took a negative experience of cancer, and are making something so positive come out of it, I wish there were a lot more people like you. It really is an exceptional thing that you are doing.”

The thing is, I don't think that it is that exceptional.  I am not that courageous, really I am not. I just think that not enough people know that kidneys are needed. People would do this if they knew it was really needed, and if they were told the steps they had to take. Part of me writing this blog has to do with getting the word out; you might be able to save a life too. If I can do it, and I am such an unextraordinary person, maybe you can too.

#26. Who is the designated person? - Dec. 2011

I also asked the doctor about what type of person would get my kidney. He said that because I am a smaller person, it will likely go to someone the same size as me. If it’s a good match, my kidney could help that person live for 15 to 20 years. My kidney may grow up to 20% once it is in a new person’s body. “Isn’t that amazing!?” the doctor said. “We have no idea why it knows to do that, it just does!” A part of my body, growing in another body, that blows my mind!

We also talked about options I might prefer in terms of who would get my kidney. They could simply match me up to the next compatible person on their list, and do the donation. One to one. Or I could put my name into their larger registry, and there could be a domino effect. Sometimes people who need a kidney have a loved one who is willing to be a kidney donor, but they are not a match. They are willing to donate, if it will help their loved one get a kidney. An undesignated donor can help matches fall into place. So in that situation, my donation could help two or three donations happen at the same time. I would be helping the most number of people. I told the doctor I was definitely interested in the domino effect…I’d like to help the most number of people with my kidney.

But since then I’ve been thinking about it. It does seem to make the most sense; help the most number of people that you can. But I think about the young man I saw in the waiting room of the doctor’s office. He was there with his mom; he looked to be about the same age as my son. I wonder if he was the person that the doctor was talking about who they had trouble matching with a donor. What if none of his family members are healthy enough to make a donation; then he is not in that domino list, waiting for a donation to get arranged. If I could help one person live longer, isn’t that enough?

If I join this Paired Donor Exchange program, it will probably take longer to co-ordinate the transplant because there will be more people involved.

#25. A risky business - Dec. 2011

One of the things the transplant doctor talked at length about is the risk of being a kidney donor. While he said that kidney removal is something that they do routinely, there are risks in any operation. “Let me tell you about some complications to being a kidney donor that I have seen at this hospital,” he said. He told me of someone who turned out to have a heart condition that only became noticeable in surgery. They had to keep her in for all sorts of tests, and instead of being in the hospital for six days like she had planned, she was in the hospital for two weeks. It turns out the heart problem was not a big problem, but she had to have those tests. Another person developed an infection, and had to be in ICU because of kidney failure of the remaining kidney. But it started working again. Or you could get an infection in the incision. Or you could get C.diff. by being in the hospital. He quoted statistics of how many people have died having their kidney removed in the last ten years in North America (I think it was one or two people).

So that was a sobering conversation! But he also highlighted that it is not as risky as some operations, for example, having your gallbladder removed. They do a lot of screening to make sure you are a good candidate.

He said, “If you are donating a kidney to someone you know, there is a benefit to you. Even if you have complications, you can balance that out by the fact that you are helping someone you love or care about, or someone you at least know.”  And then he went on to say, “As an undesignated donor, if you have complications, you are really going to question whether this was a good thing, because you won’t meet the person who is benefitting from what you did.”  That’s why it is called an altruistic donor, there is no benefit to you.

But for me, it has to do with being a certain type of person. I want to be a person who would be willing to take a risk to save someone’s life. And so if I am that type of person, I am willing to do this, and I have to accept that there may be complications.

#24. A different sort of relationship - Dec 2011

When I met with the transplant nephrologist, he started by explaining that our relationship was very different than most relationships he has with patients. He has nothing to give me; I am not sick, I have not come for treatment for anything. He stated his bias; he sees a lot of really sick people, and he knows he can help them if he can find kidneys to transplant into them. So he is obviously pro-transplant. But that his first priority with me is to see that my health would allow me to safely donate a kidney.

In response to my question, the doctor explained that the majority of people with kidney disease aren’t candidates for transplants. They may have gotten kidney disease very late in life, or they have other complicating factors that do not allow them to undergo an operation like that.   But if they are a candidate for a kidney transplant, and they can get a kidney in time, their health will be significantly improved.

People sign their donor cards, which is good, but there are only a small number of people who die in such a way that their kidneys can be used for someone else.  Kidneys from live donors have a far greater success rate than from deceased donors.

Something he said at the end of the appointment sticks with me. He said, “Imagine if we could cure cancer by transplanting…”  I never thought of it that way before; everyone is searching so hard for a cure to cancer, people are running and biking and raising tens of millions of dollars to find that cure. For people with kidney disease, they are dying too. And some people can be cured of kidney disease. It’s just that there aren’t enough kidneys to go around.

The doctor told me the story of a young man he had seen earlier in the day. He had had a kidney transplant, but it failed, and now he is back on dialysis. They want to give him another kidney, but he keeps having antibodies against every kidney that they test for him. So it’s a very frustrating and long wait time for him…

Somehow I got the sense that being this doctor is both very rewarding and also excruciating. Rewarding because you can give people really good news, and help them get a new kidney so they can live long and healthy lives. But excruciating because there are people you want to help, but you can't because you can't create a kidney out of nothing, you have to wait until one becomes available. Until someone dies, or a donor is found that matches. And sometimes you can't find a match in time, and the person dies. I think it would be a very intense job to have.

#23. Good news! - November 2011

Today I met with the transplant doctor. I was quite geared up for this meeting, so I was glad it finally happened. A transplant doctor is a nephrologist. He is the person who figures out who should be donating and who should be receiving a certain kidney.  He is not the person who does the surgery. That doctor is a urologist. So I have learned something new!

And I also learned that I am healthy! The transplant doctor went over all my tests and  told me that I don’t have HIV, I don’t have diabetes, I don’t have lupus, and I’ve never been exposed to Hepatitis B or C or a type of flu to which 80% of Canadians have been exposed. I don’t have high cholesterol. My kidneys are operating just fine! I’ve never gotten so much good news in two minutes! I thought I was healthy, but now it is confirmed!

I had a very pleasant and long meeting with the doctor…an almost 90 minute appointment. He was very congenial, although it was obviously the end of a long day for him. He explained that all the tests were great and that I look like a good candidate for being a kidney donor, so we can move on to further tests. Terrific!

Again there were questions about my family history, my medical history (do people not read what other people have already written down, I wonder?), but I guess there’s no harm in double checking things. One of the things I told him was that my mother died of a pulmonary embolism after an appendix operation (I was 4 years old at the time). He asked me whether anyone else in my family has blood clotting problems, and I said I didn’t know, or at least I hadn’t heard of anyone. He said he will do some tests on my blood to check for that, just in case. He also did a brief physical exam, listening to my heart and my breathing, and looking in my eyes.

#22. Transplant doctors - Nov. 2011

I am looking forward to meeting with the transplant doctor and asking some questions.  Here are some questions I’ve thought of:
Am I a good candidate to be a kidney donor?
How do you choose who gets my kidney?
What are the criteria for getting on the list for a kidney transplant?
How long is the average length that a transplanted kidney lasts?
Is there a chance my kidney would be used in a domino way; so that a family donor who is incompatible could then give their kidney to an unrelated person?
What is the most frequent complication that could happen with a kidney donation?
How long will the surgery take?  How long will I be off work?
What sort of follow-up would I have to do after surgery?
Can I request a specific doctor to do the transplant?

I’m asking that last question because I already trust the doctor who operated on my husband. I remember the first day we met him. My husband had recently received the diagnosis of kidney cancer from our family doctor. He and I were very nervous to meet the specialist, a urologist from St. Joseph’s Hospital in Hamilton who treated kidney cancer.   He came into the room and was very articulate, a good listener and able to explain things in ways we could understand. He was very present with us, he was not frustrated at all when we asked him to explain things a couple of times, because we had a hard time absorbing all the information. He was honest and didn’t pull any punches, explaining the risks and the possible outcomes of having this type of cancer.  He was very relaxed, he was not in a hurry at all, he seemed willing to spend as much time as we needed. He calmed us down and made us feel that we were going to be given the best care, the most advanced treatments that could be found.

Subsequent meetings with him only confirmed our first impression. He was always professional and competent and kind. I would like to choose him to do the operation simply because I trust him already. He saved my husband’s life, I feel confident that I can put myself into his care. The other doctors are no doubt just as good, it’s just that I already have a relationship with this doctor.

#21. In the news - November 2011

Today I read an article on the front page of the Globe and Mail about a woman who was an undesignated donor. So being an undesignated donor is getting some press after all! It talked about how she registered with the Canadian Blood Services, in something called the Living Donor Paired Exchange Program. If you need a kidney, and your friend or family member would like to donate, but is incompatible, you get put in a registry. They eventually find pairs of people who, although incompatible to the person they know, are compatible to another pair. Sometimes it’s a group of six or eight people who all get involved in a transplant. The existence of a new undesignated donor widens the pool of matches and  can sometimes help to make these matches fit, so your donation can allow a number of transplants to take place.

#20. Just a chat - November 2011

Today I went to St. Joseph’s for another blood test;  one needle but they drew 8 vials of blood.  I think I am being tested for everything under the sun. 

Then I had a discussion with the social worker which lasted around 45 minutes. It was pretty basic. It included a lot of questions I have already answered when I first signed up for this process; my address, allergies, next of kin. There were a number of questions just asking about my personal health history…do I go to the doctor regularly, do I go to the dentist. They are trying to get a picture of whether I take care of myself.  And then she basically asked me why I want to be a donor. It was a very congenial conversation, nothing startling or intrusive. I wondered whether the social worker would try and push me on why I want to donate, just to see if I really believed it. But that wasn’t the tone of the conversation at all. She also asked what time of the year would be good for me to donate, and whether I would have family support to help take care of me after the operation.

The social worker also explained about the Trillium Foundation. It`s a program to help organ donors cover expenses that are not covered in any other way, you keep your receipts and they reimburse you.  I read more about it when I got home.  It seems it is designed mostly for people with large costs, for example if you are from a remote community and you have to drive or fly long distances to come for testing, and have to stay in a hotel.  I am within driving distance, so it doesn’t really seem to apply to me.  It can also cover the cost of your missed time from work, if there are no other options available for covering that cost.

So that’s one more meeting checked off the list; the next one is my meeting with the transplant doctor, where he tells me the results of all these tests I’ve been having, and he does a general physical. The meeting with the transplant doctor is where they decide whether I am a good candidate to be a kidney donor.  If I am then they start with some more expensive tests, like a catscan.

#19. Undesignated giving - Nov. 2011

The phrase “undesignated donor” is interesting. I have been raised in a Christian community that encourages giving. We give to people we know in our community, helping them in many practical ways. But lots of time we are called to give to people we don’t know.

We collect food for Community Care; I don’t know the people who will be getting the groceries. We collect money for relief work; I often don’t even know what country the money is going to, let alone who is getting it. We sew blankets to help people in disaster zones; I don’t know who is sleeping under the blankets I’ve made. Being an undesignated donor is part of my community’s genetic make-up. So giving a kidney to someone I don’t know…it’s just more of the same. Instead of my food, or my money, or my sewing work being used by someone, it’s my cells, my tissues, my flesh. Outside of a sperm or an egg donation, it`s about the most personal undesignated gift you could give.

#18. People who take risks - Nov. 2011

I was talking to my son this week, explaining to him about why I want to be a kidney donor. Again, the issue that comes up is risk. I shared with him the stories of people I know who take risks in order to help people. I have a good friend who is a social worker. Part of her job involves apprehending children at risk and removing them from their families. It can be a dangerous job, she has received threats.  For most people having their children taken away is a life and death issue, and it’s a time when violence can happen. But she still does her job. She walks alone down the street, she drives alone. She does it to help children not get hurt.

And then I know a young man who is a police officer. He has a wife and young children at home, yet he takes risks every day doing a job where he has a higher than average chance of being shot, or run over, or seriously injured by people who don’t respect the law. He does his job because he believes in it, he believes that it helps people.

I think we all want to live in a society where people are willing to take risks for the greater good.

#17. Naked - November 2011

Today I was in the bathtub and I looked down at my torso. I thought about the fact that I will lie on a table with my torso exposed for them to operate. I touched the place where they will make the incisions, and send in the instruments to take my kidney out.  This operation will be done laparoscopically, which is how my husband's kidney was also removed.  It means they make several little incisions on either side of your torso for the instruments and the camera to go in, and then they make a longer incision in your lower abdomen, where they take the kidney out. Kidneys are sometimes removed with a very large incision, and that takes a lot longer to recover from, because of all the muscle they have to go through.

I have never had an operation, unless I count getting my tonsils out when I was a kid. When I was giving birth to my daughter they thought they would need to do a caesarean and even swabbed my stomach, but in the end, the last attempt with the forceps worked. So no scars on my torso besides stretch marks!

I trust the people at St. Joseph's, the doctors and the nurses. They saved my husband`s life, I know they will be careful with mine. And yes it will hurt, I have no illusions about that, I saw how painful it was for my husband. But I also saw him recover within a few weeks.  And this is simply not as scary as what we went through with him. He had the kidney out, but we were still so scared about the cancer. Would it return, and where would it return to? It was a relief to have the cancer removed but after the surgery we were still a long way from recovery.

For me it will be different; the road to healing begins the first day (barring any complications), and it should get better bit by bit, day by day. And the amazing thing is that a piece of me will be working inside someone else`s body, giving life.  

#16. No compromise - Nov. 2011

I talked to my sister on the phone the other day, and I told her that I was getting tested to see if I can be a kidney donor. She was not very enthusiastic, in fact she said she didn`t think it was a good idea. She had lots of questions, "What if you need your kidney? What if you get kidney disease? What if they give it to someone who doesn`t really live a good life, how would you feel about it?” Those are all good questions, questions I’ve had myself. 

From what I’ve read, if you get kidney disease, it almost always affects both your kidneys anyway. If I give away one kidney and get kidney disease, it might move a bit faster, but it’s not like keeping both my kidneys would have saved me from kidney disease. The exception for that is kidney cancer, which often affects one kidney. My husband had kidney cancer, and he lost a kidney because of that.  What are the chances that we would both get such a rare type of cancer?

After a fairly long discussion about why I want to do this, and some of the health questions, my sister said, "Well, Carol, just basically I care about you and I don`t want you to do anything that would compromise your health. I don`t want you to take any risks.”

I explained to her that the doctors would not allow me to do this if they thought it would compromise my health. People who donate a kidney have the same average lifespan as anyone else. But I know that there are risks with any operation. But there are risks every time I get into a car and go on the highway. There were risks when I decided to get pregnant and give birth to a baby…

That night I talked to my husband, and for the first time I heard a note of anxiety in his voice about this. “Why do you want to do this?” he asked. I explained it, and he nodded. I told him that the transplant co-ordinator said that he should come to my meeting with the doctor, because we can ask any questions we want there. I don`t want to worry him, I feel bad causing my family this worry. But hopefully when they understand the facts, it will help them.  And if they understand the good that this can do, they will also get on board.

#15. Eavesdropping - October 2011

Yesterday, while I was sitting in the transplant clinic waiting to talk to the co-ordinator, I overheard two people talking about their experience with their transplanted kidneys. A young man explained he was on his second transplant and things were going well. “The first time…within two months I was out paintballing. It was that much of a miracle.” The second person, a woman around 65 said, “This is my first kidney, I was on dialysis for three years. I don’t want to go back to that…every day I pray that I won’t reject it.” They went on to talk about good news stories of people whose transplanted kidneys had lasted decades. As they chatted, they both talked about how they had tried for a kidney from a live donor, but their family members either had health problems, or they were not a match.

I went in to see the co-ordinator; she went over a few things with me and answered some questions. I asked how long this whole process would take. She said, “We do all these tests to make absolutely sure that we will not compromise your health by taking out a kidney. Once you’re approved, then it could be two or three months to find the suitable donor and set up the surgeries.” So that’s promising; I thought it might take much longer.

I actually met the transplant doctor, he came in with a coffee for the co-ordinator, and we were introduced. I’m going to be seeing him at the end of November. Later that morning we met again in the elevator; “Who do you want to donate a kidney to?” he asked. “I don’t know,” I answered, “I guess I’ll find out when they choose someone. But no…I guess I’ll never find out, that’s the point!”  As I was saying this, I saw his eyebrows go up, "That's really interesting," he said, "I look forward to meeting you in November!”

#14. What a gift- October 2011

Today while I was getting blood work done, another woman was in the chair across the room talking to the nurse. I’d noticed this woman in the waiting room, she was around 35, I would guess, and she looked very very weak. She was walking very slowly, and she asked whether they could find a wheelchair for her to get to her next appointment which was on the other side of the hospital.

While she was having her blood taken, the nurse, who obviously knew her asked, “So, is it happening? Who is your donor?”  The woman replied, “It’s not someone I know…I just got the call.”  After the woman left, the nurses commented to each other, “I’m glad they finally found a match for her.”

Seeing this woman made me think; all the doctors have been trying to help her, but this is how sick she has become, she can hardly walk. What she needs is someone to donate something to her—a kidney perhaps? I could be giving a gift of life to someone like that. It made me hope even more that I can go through with this.

Today’s tests were easy. I brought in my 24 hour urine sample. I’d been fasting from food and water since last night; today at 8 a.m. they took blood, and then had me drink a super-sugary drink. Then I came back two hours later for another blood test. I also had a chest x-ray, and an ECG. I was surprised how fast the ECG was; they put little sticky patches different places on my body, hooked me up to a machine so they could read my heart, and five minutes later I was walking out.

#13. Best behaviour - October 2011

Tomorrow I go for another morning of testing. Today I began a 24 hour urine collection. It’s funny how I’ve been thinking about what I’m eating and drinking these past few days. I want my kidney to be on its best behaviour, and I’ve been consciously drinking a lot of fluids and eating well!

I read yesterday that kidneys weigh around 4 ounces. That’s a lot less than I thought, I was thinking I was trying to give away a pound of flesh or something (lol... little Shakespeare reference there). Four ounces, a very small little organ.

I heard today about a friend whose marriage is ending after 26 years. That makes giving a kidney seem like small potatoes, compared to cutting a person out of your life, out of your memories.

This past week I visited with a 93 year old woman named Lydia. She was very supportive when my husband was sick, and she volunteered the information that she had a kidney removed when she was 25. She’s been living well for almost 70 years with one kidney!

#12. Twelve years - October 2011

I was reading about kidney donation on the internet and came across the statistic that the average life of a transplanted kidney from a deceased donor is 5 years. The average lifespan of a kidney transplanted from a live donor is 12 years.

I felt a pang of disappointment when I read that.  Twelve years…  I thought my donation would save someone’s life permanently, giving them the opportunity for a long life. But reading more I realized that having a transplanted kidney means taking anti-rejection medication, and while that is infinitely superior to dialysis, it is still not a picnic.

Twelve years. If I had died twelve years ago, my daughter would have been in grade 4, and my son in grade 2. What have these twelve years meant for me? Everything! I’ve been able to see them grow up, to help them with school, to help them mature and make decisions on their own. If I was going to die at 38, and someone was able to give me a gift that would allow me to live until I was 50, that would have meant the world to me. Twelve years is still a lot. 

#11. Giving - October 2011

I know a number of people who are regular blood donors. They’ve been doing it for years. They say it doesn’t take much time, but I know they are busy people. Lately the advertisement from the Canadian Blood Service is “Blood: it’s in you to give”. I really like the slogan because it plays on several different levels. Blood is literally in us, so we can give it. But the phrase also suggests that you have the guts or the ability to be a giver. You can do it!

The same holds true for kidneys, for many people. Many people are healthy enough, and have two kidneys, and can give one. All you need to do is to want to give one. It’s in you to give.

I want to be a giving person. I’m a Christian, and I see life as a gift that was given to me; every day as a gift. I am who I am because so many people have given to me; my mother gave the space in her body to have me, my parents gave me love and lots of time, my church community was filled with people who spent time with me and cared for me, my friends have given me countless hours of friendship. Giving is at the heart of who I am, at the heart of who I want to be. 

#10. An uncommon act - October 2011

One of the things I notice in all the websites from hospitals, and in all the hospital literature I’ve been given, is that everyone assumes that you are related or are friends with the person you are donating to. There is nothing written from the perspective of someone like me, who just wants to donate. I asked  the transplant co-ordinator about this. She said, “It’s just not very common for people to be an undesignated donor. You are our…” and she stopped for a moment to think, “…our third undesignated donor.”  I wondered if she meant I was the third this year, but she said as far she could remember I was their third undesignated donor ever.

I was pretty surprised by that. I would have thought more people would do this. But then it’s not like anyone advertises that this is needed, or that there are people going around making presentations asking people to be undesignated donors.

What I have seen is advertisements about signing your donor card. That’s a good thing, and more people should do it, because it can save lives. But really, to me, it doesn’t seem like a really risky thing, considering that when you are dead you no longer need your kidneys! And there is a slim chance that you will die in a way that your organs can be used. Although I have heard that some people are squeamish about this, and don’t feel comfortable signing that card.

So being an undesignated donor is not yet a common thing. That’s why I decided to start writing this blog, so people can hear about the experience of being an undesignated donor.  I hope it will encourage others to think about this as an option. So many people are waiting for a kidney; they die on the waiting list, because there is no kidney for them. 

#9. Hospital world - October 2011

I’m still reflecting on my day in the hospital yesterday getting that test. It is different visiting “hospital world”. There are sick people everywhere…people lying on gurneys in hallways, people in wheelchairs being pushed around, limping people pushing IV poles. There are a lot of sick people. I also saw two extremely pregnant women, walking the halls with their husbands. They looked very sad and worried; I felt like telling them, “Congratulations, soon you will be having a baby!  This is so exciting!”  But they aren’t at that point yet, they are still in the scary part of the delivery process.

What was also amazing was that there were so many many people there working to make people better. Everyone I met was so kind and helpful, and I saw so many other people in their uniforms, with their badges, and they are all working so hard. Like the woman who gave me the test in the nuclear medicine department. She studied for years and now works measuring people’s blood, measuring my blood, so that they can figure out if I can be a kidney donor. Donating a kidney seems more like a team effort suddenly. 

#8. Day one of testing - Oct. 2011

Well, today I had my first set of tests at St. Joseph’s Hospital in Hamilton. I went for a blood test first; the nurse asked me who I was donating a kidney to, and I told her I was just hoping I could give one, I didn’t know who it would go to. “Aren’t you a lovely soul!” she said. She took a couple of vials of blood, and sent me on my way. As I left she said, “I hope you get what you want.”

Next I went to meet the transplant co-ordinator, who I had talked to on the phone. She was very nice, and she had me answer a very detailed set of health questions. There were many I expected, about international travel and sexual practices. I was surprised to be asked whether I had ever been in contact with a bat; I hadn’t thought about the risk of rabies! 

The glomerular test happens in the nuclear medicine department. It consists of them injecting a small amount of radioactive fluid into my bloodstream. It just looked like clear fluid, and I couldn’t feel it at all when it was injected.   The nurse explained that glomeruli filter my blood, and by putting a radioactive substance in my bloodstream, and then measuring my blood, at two, three and four hour periods, they can tell how effectively my kidney is working. So no urine test is involved with this. Apparently it’s quite a small amount of radioactive substance; 1/20 of the amount they would give me for a bone scan. It has a six hour half-life, and she said since I am peeing it out, it will be almost all gone by tomorrow. 

#7. A dream - Oct 2011

Last night I had the weirdest dream. I dreamt that somehow I was able to detach my head from my body…sort of semi-detach it, and take it off my neck and hold it in my lap. I was holding my head in my hands…it was still attached to my body with all the blood vessels, which stretched from my neck to my head on my lap. And I looked at my face in my hands, and I was amazed that I was able to hold my head at arm’s length and look at it, something I had never before done. It was a really interesting experience. (In the dream it didn’t occur to me that I wouldn’t be able to see my head if I took my head off because I would have no eyes). Then it was time to put my head on again, but somehow the blood vessels got very tangled up, and there was a moment where it was very dangerous, but it all got fastened back on OK. Then I woke up. 

#6. Ready for testing - Oct 2011

When I explained over the phone that I wanted to be a kidney donor, the person asked a few basic questions about my health, and then she said that they would set up the tests for me to explore further whether I could be a donor. A week later I got a three page letter in the mail with five appointments scheduled over the next two months, and detailed instructions about where they were and what they involved.

Tomorrow I go to St. Joseph’s Hospital in Hamilton for my first blood test and a glomerular filtration rate test. I had to look that up to figure out what it means, and what it actually entails. I’m not sure I can understand the science of it, but basically it sounds like it’s a test to see whether my kidney is working well. Maybe kidneys have varying degrees of success at their job; I wouldn’t know!  Mine seem to be working fine, I have no complaints. I guess tomorrow they will test and see. From what I gather, it sounds like the test involves them injecting something and eventually giving a urine sample.  They said the test will take four or five hours.

I am feeling curious and a bit nervous about starting all these tests.

#5. Courage in slow motion - Sept 2011

I think everyone wonders whether they would have the courage to save someone’s life if they were given the chance. Would you risk your life to pull someone out of a burning building?  Would you jump in the water to save someone who was drowning? 

I know someone who saw a car crash; he immediately ran and tried to get the person out of the rolled-over car. “Weren’t you afraid the car would blow up?” I asked him.

 “What would I do?” he answered. “Just stand far away and watch the person bleed to death?   I didn’t even think about it. They needed help and so I helped them.”

I had a conversation with one of my friends the other day; he was the first person I’ve told outside my family that I’m thinking of being a kidney donor. I asked him, “Would you jump into the water to save a drowning person, even if you knew you might be risking your own life?”  Without an instant’s pause he answered, “Absolutely. Last year I jumped into a frozen river to save my dog’s life!  She’d been walking on the ice and fell through, and I knew I had to save her.”    

I know a lot of people with courage like that. Years ago, my husband and I were driving late one night in downtown Winnipeg and we saw a couple of teenagers having a fight. One girl had another girl down on the ground and was banging her head against the sidewalk. A large group of teenagers was grouped around them, watching. My husband screeched the car to a halt and jumped out and ran to help the girl on the ground. He didn’t think for a minute that someone might attack him, or that maybe someone had a knife. Someone needed help and he helped.

Kidney donation is a bit different because it’s nothing fast. It’s courage in slow motion. Someone is dying, and you save their life; but it takes a lot of time. You have to do a bunch of tests and meet a lot of people, and have an operation and recover. But in the end the result is the same. You save a life. I want to be the type of person who would save someone’s life. Maybe I will get a chance to do this. I hope so.

#4. A gift to a stranger - Sept 2011

After overhearing the conversation on the plane, it was clear to me deep inside that I was prepared to be a kidney donor if anyone ever asked me. But I knew that the chances of that happening are relatively slim. I know lots and lots of people, and only one person was ever asked to be a kidney donor (which they did).

A few months after the plane ride, I read an article about people who donated a kidney to a stranger. It was an American article that profiled a number of people who donated their kidney to people they didn’t know. For me, the article was like someone opening a door that I didn’t even know was there. It had never occurred to me that I could donate a kidney if I wasn’t asked.

That’s how I started researching about what it means to give a kidney to a stranger. In Canada they are generally called “undesignated kidney donors”. In the literature in the States, I saw the term “altruistic donor” a lot, which doesn’t really make sense because people who donate their kidneys to a family member or friend can also be altruistic.

I started thinking about it; someone was dying because they didn’t have a kidney. If it was my family member, say, my daughter, who needed a kidney, and none of our family was a match for her, would I want a stranger to donate a kidney?  Yes, I would, it would mean the world to me. So maybe I can do that for someone; some mom is waiting for a donor to save their child’s life, or some husband is waiting for their wife’s life to be saved. Maybe I can be part of that.

#3. A conversation on a plane - September 2011

The year after my husband had his kidney removed something happened that launched my thinking about being a kidney donor. I overheard a conversation on an airplane. At 35000 feet, I was reading a book, but couldn’t help overhearing the conversation that the two women next to me were having. One woman was explaining that her nephew had asked her whether she would donate a kidney to him. The gist of the conversation was that there was no way she was going to do this, and that really it was unreasonable of her nephew to ask her to do this. She said, “He’s on dialysis, it’s not like he’s dying. It’s a big thing to ask me to give up my kidney. What if I need it?”

I felt like joining in the conversation, but I restrained myself because I didn’t want to be rude. I have met many people who live on dialysis. It’s a difficult life, and it’s not the same as having a kidney to clean your blood. There are health problems, and your life expectancy is significantly reduced. You get on the list for kidney donation because it’s a hope for a better life. You need a new kidney, or you will die. I thought about all this as I was listening to the conversation of these two women on the plane.

As I listened to this woman on the plane, I wanted to say to her, “If it was me, I would do it. I would donate a kidney if someone asked me. It would save their life.  You can live well with one kidney, I’ve seen my husband do it!” 

That got me started on this path to donate a kidney; I overheard a conversation on a plane.

#2. Why a kidney? - August 2011

One of the reasons I am thinking of being a kidney donor is because my husband had a kidney removed.In 2008 my husband was diagnosed with kidney cancer. It was a  devastating diagnosis for us both, and it resulted in him having his kidney (and the tumour attached to it) removed. Thankfully he is doing fine now!

During 2008 I learned a lot about kidneys. I think the only thing I knew about kidneys before my husband got cancer was their shape, and that we have two of them. I had vague recollections of grade 11 biology, and pictures of blood vessels and arteries, and something about cleaning the blood. I knew that people who had kidney failure were on dialysis. But even my understanding of where the kidneys are was vague.

That changed, of course, as we learned more about the disease that was affecting my husband. And because of that experience, I had a first-hand view of watching someone recover from having a kidney removed. I was told and then saw that the remaining kidney started doing more work. They say that the remaining kidney even grows bigger over time to accommodate the increased work load. Our bodies are amazing.  Our family’s experience with cancer is the reason I started thinking about kidneys in the first place.

#1. Making the call - August 2011

I’m thinking about donating a kidney. I haven’t been asked to donate. I’m just thinking of donating it to someone I don’t know, someone who needs it. I’ve been thinking about doing this for around two years. Next week I start doing tests with St. Joseph’s Hospital in Hamilton to see about my eligibility to be a donor.

The biggest step was really making the call to the hospital. Up to that point, it was all just thinking in my head, and a few conversations with my husband. I had to decide; is this where it ends?  Just thoughts?  Or did I really want to give away a piece of my body?  I made the phone call. Actually I had to make a lot of phone calls. I wasn’t sure who to call, and people couldn’t really direct me to the right place. But eventually I was directed to the transplant clinic at St. Joseph’s Hospital, which is around 50 kilometers from my home.

Right now I feel nervous, in an excited sort of way. It reminds me of the way I felt when I was waiting for my doctor’s appointment to find out whether I was pregnant. I wanted to be pregnant, I thought I might be pregnant, but I wanted to know for sure. I wanted a professional opinion about whether there was another life inside me.

Thinking about donating a kidney reminds me of this because I see it as giving life. Someone is dying because they don’t have a kidney. I have two. I can give away one and still live. Am I carrying around a piece of life inside me that I’m going to give away?  I don’t know, I’m waiting to find out!