Earlier this year, Lisa Sayer's life took an unexpected turn. "She had come across a magazine article about someone who had donated a kidney to their partner," writes Marina Jiménez in Related contentMy domino kidney . "The piece included this alarming number: Nearly 60 people in Canada die each year waiting for a kidney.
"It seemed radical, yet it made perfect sense. Here was a concrete way to help out someone else in need: She could give one of her healthy kidneys to a complete stranger.
"'You take something out of someone and you put it into someone else," says Ms. Sayer ... 'I fell in love with that idea. It became very appealing.'
"Ms. Sayer had no idea she would become the domino in a chain of events that would make Canadian medical history. In an extraordinary new program in the high-stakes world of kidney transplantation, her gift of life would end up helping not just one person, but four."
Ms. Sayer took questions about her experience donating a kidney to a complete stranger. You can read her replies below.
Kathy writes: I've been thinking of doing this for my boyfriend (I'm past child bearing years), but we're not a match so we'd have to exchange with another couple. How did you explain this to your family and what were their reactions? What happened with work - did you have to take vacation time or a leave of absence, or is it considered sick time?
Lisa Sayer: Kathy, At first, my family was very supportive with my decision. It was only after I passed all the testing that they started to voice any concerns. Even then, it was mostly my husband who had misgivings and I know they were based on his fear of needles, hospitals etc. (He was severely burnt as an infant). I have found that a lot of people who react in a negative way do so out of fear or out of feeling guilty somehow that they too aren't donating. Like my donating somehow is a judgment on them, which is really silly. As for work, my doctor didn't want me to return to work until eight weeks post surgery as my job involves heavy lifting, but I have heard of people returning to work as early as two weeks post. As my employer has no medical leave programs I went on EI for the eight weeks but there is a two week waiting period. Again, kind of silly if you ask me.
Bob writes: Hi Lisa, Great for you for doing this and donating your kidney ! I have two cousins and an uncle who died from kidney failure. I am at the middle part of a barrage of tests to hopefully be matched with someone who can use one of my kidneys.
Did you, can you have a pint or two of your own blood taken prior to the operation as I would think that you need blood for the operation? It would seem like a good precaution.
Did you take a medication prior to the CT scan to offset effects of the solution they put in your veins? While I did not have any real side effects from the test, it was a very uncomfortable sensation when they initially released the solution to my vein.
Now that you have done it, what are one or two things you would recommend or suggest to someone donating that you wish you had known or done beforehand?
Lisa Sayer: Bob, I did not have any blood taken prior to surgery as I was told the chances of needed a transfusion were quite slim, so I don't know what the possibility of doing a donation pre-surgery would be. Probably the coordinator for whatever transplant team you are involved with could answer that question for you, I have found them to be very helpful in that regard. I did not take any medication prior to the CT scan. I wasn't aware that was an option and I didn't really have any side effects from it. I do remember the feeling of the solution streaming through your body, and you are right, it is unusual to say the least.
I wish I had documented my journey earlier on. I did keep a journal of my experience with the actual donation but it would have been nice to have it right from the beginning. One thing I would greatly recommend is making sure you have an advocate at the hospital. At St Pauls Hospital in Vancouver, where I did all my testing, you have an advocate that is not a part of the kidney transfer team. They are just there for you. As I traveled to a different city and hospital, I had no family doctor and no advocate and it sure would have been nice at times to have someone to be your liaison. Good luck with your tests and I hope your surgery goes as smoothly as mine did.
Susan writes: Lisa, your story of giving is such a beautiful one. Was there any part of you that was afraid or reluctant to do this? If so, how did you overcome those feelings?
Lisa Sayer: Susan, I did have two fears. My first was the knowledge that I had a "bad time" with anesthetic. I throw up a lot! So the idea that I would be coming out of major abdominal surgery and have to deal with nausea and the pain of vomiting really scared me. I came to just accept that that would be something I would have to deal with but when I talked to the anesthesiologists about it prior to surgery they both assured me that there had been advances in that area since I had had surgery last. They did a wonderful job and I had no nausea at all! My second fear was Parkinson's disease. Both my father and my Grand Father died from it. When my father was diagnosed we learned that often people can carry the gene but it can be triggered by stress or illness. My father was just recovering from a very bad flu when we first noticed him shuffling. I know it may sound crazy, but I did worry that maybe this surgery would put too much stress on my body and that if I was carrying the gene it would trigger it. What changed my mind was basically my age. My father was in his early sixties when he took ill and I am only 47. Honestly though, with the history of Parkinson's in my family if I was closer to sixty I probably wouldn't have taken the risk.
Penny writes: For the past couple of years I have been giving the idea of kidney donation a lot of thought. Do you know or can you find out if previous abdominal surgery (C sections) would disqualify a donor? I must say I love the idea of the domino kidney - though I suppose it's not guaranteed that more than one person would benefit from a donation. But it's quite wonderful that so many people did.
Lisa Sayer: Penny, I can't say for sure if a previous abdominal surgery would disqualify you as a donor but I think if there were no complications and you had a good recovery it shouldn't be an issue. I believe your general health and specifically the health of your kidneys is the main factor. The best place to get an answer to that question would be to ask the Coordinator at whatever Transplant Center you are hoping to donate through. If you decided to donate and were given the go ahead you could ask to be put on the Paired Transfer list which would allow you to donate to a mismatched pair.
Ruth writes: I am overwhelmed with your generosity to donate a kidney. Were your family and friends supportive of your decision? (Your story really strikes a chord with me because I have O positive blood type and am in great need of a kidney transplant.)
Lisa Sayer: Ruth, My family, friends and co-workers were all extremely supportive. I have been really blessed in that way. My husband had some difficulty with it but when he realized how important it was to me he was completely on board. He traveled with me to the city I donated in, and took care of me every step of the way through the transfer and recovery. I wish you all the best . Maybe this story will help you find the donor you are looking for.
Joan writes: Hello Lisa, I read about the transplant process you were involved with and applaud you for your initiative, making a difference in so many lives.
I've been a blood donor my whole life, and a platelet donor for many years. I've now been taken off the platelet list because I've had two children, which creates some sort of antibodies that won't allow me to donate regularly any more. I was on the bone marrow registry for years, but am now too old. (I'm 64).
My question is about the criteria for donating a kidney. (I've looked on the Canadian Blood Services website and can't find the answers.) There seem to be so many rules about donors... if I wanted to register in this new Living Donor registry, would I be eligible? Are there criteria related to age, or pregnancy history, or travel, etc? I am in excellent health in spite of my old age!
Lisa Sayer: Joan, Kudos to you for all your blood donations. So many people forget what a gift that is. As for donating a kidney I believe the number one criteria is how well your kidneys are functioning. There is some deterioration in kidney function as we age, even in healthy individuals so I would say...register. Sign up, go in for whatever testing they require. They don't seem to want to give you specific criteria because so much depends on your mental health, your physical health, your ability to have support during recovery, your financial situation etc...they really cover the bases when it comes to screening donors. If this is something you really want to do I would just sign up and see what happens. Good luck to you.
Michael writes: Lisa, Truly outstanding! A year and 3 days ago I donated my left liver lobe to a person I had never met. Now I am being screened as a possible altruistic kidney donor. You did an amazing thing and are an inspiration.
So, my question to you is, "When you think the time is right, would you consider donating a liver lobe?"
Lisa Sayer: Michael, Wow a liver lobe and now a kidney and I inspire you? I think the tables are turned on this one. Would I consider donating a liver lobe? Well, if it was for someone in my family, or a friend then yes...of course. Would I do it altruistically...I would have to say no. One thing I have learned through this venture is that one person giving a kidney actually, (at least in my case) involves a whole team of supporters, and I don't think I could ask my supporters to go through this with me again. I work for a family run Veterinary practice that happens to be on a working farm so me being away for eight weeks in the summer was a burden. They were more than happy to do it but I wouldn't ask them to do it again. My family...they were great...but they of course had fears. Financially... my husband was laid off in February and I was on EI for my recovery so...for those reasons I probably wouldn't look donate a liver lobe. I feel blessed to have had this opportunity. It was something that I wanted to do for a long time and I feel great about how well it turned out for all involved. I am still on the Bone Marrow Donor Registry and who knows? They might call. I wish you all the best in you screening.
Jacob writes: What was your recovery like? Are the risks of complications high?
Lisa Sayer: Jacob, For the first two days after surgery I was given an IV hooked up to a self-administered Morphine pump and it worked very well. It was painful getting in and out of bed and sneezing or coughing were excruciating. Luckily that didn't happen often. My surgery was on a Wednesday and I left the hospital Sunday and at that point my only pain meds were Tylenol. Over the next two weeks my strength improved and as long as I didn't overdo it, (they advise against lifting anything over ten pounds for six weeks), I felt great. I had a seroma, (basically a pocket of fluid), under my incision that took a few months to resolve completely but by the time I was back to work at eight weeks post surgery I was lifting animals etc no problem. As for complications I will refer you to this website, http://www.transplant.bc.ca/living_kidney_main.htm, but basically they are the same as any major surgery.