To find out more about organ donation, scroll down.
To be even more wonderful, sign your organ donation card.
To explore how to get Russ a kidney, please email email@example.com.
To find out more about organ donation, scroll down.
To be even more wonderful, sign your organ donation card.
To explore how to get Russ a kidney, please email firstname.lastname@example.org.
Wow! Three weeks already. Time for an update.
My life during these three weeks can be summarized by the following: diminishing pain and discomfort, semi-sleepless nights compensated for by afternoon naps, an improved appetite, gradually increasing walks, frequent visits to the nephrology clinic, and reliance on others.
I’m happy to report that the discomfort and tiredness that are normal following major surgery, have subsided a great deal. Healing is happening. I am much more mobile. Even so, something as minor as a shower feels like a major event that tires me out quite thoroughly. Still, enough discomfort remains that I don’t sleep all that well at night yet, although in compensation, I have a nap in the afternoon. (Wow! What an exciting report, eh?)
On the plus side, my appetite is improving. At first, I really didn’t want to eat that much. Between the mandate to drink a lot of water and the residual pain from my surgery (the scars on my abdomen might be quite a topic of conversation the next time I go swimming; that, or the response will be hastily averted eyes) I wasn’t very hungry. That’s changing now, which is fortunate, because I was losing weight and probably not eating enough protein to support the healing that my body wanted to do.
Another factor in improving health is getting exercise, primarily in the form of walking. In the first week I was back home, I could barely put one foot in front of the other, and I was exhausted after a 10-minute walk. At this point, I’d say my gait looks more or less normal, albeit significantly slower than pre-surgery, and I’m able to walk up to 30 minutes at a time. I’ll walk outside during the early morning and the evening, but I’m behaving a bit like a vampire these days, actively hiding from the sun so as to keep my now cancer-susceptible skin as healthy as possible.
A big part of each week has been visits to the Nephrology (kidney specialists) clinic at University Hospital. It’s almost like a club in a way, as I was meeting other transplanted “outpatients,” some of whom had transplants in the same week that I had my own surgery. And since the time in the waiting room
seems to go literally goes on for hours, we have gotten to know each other a bit. As it turns out, it seems quite likely that I have met my donor! A married couple had been coming in to the same clinics as I have been, and as we got to talking, I learned that she had received her new kidney on Wednesday, July 27, and that her husband had donated a kidney as part of the Paired Kidney Donation program on Friday, July 29, the same day as my surgery. He had donated his right kidney. I received a right kidney. His blood type is type O; mine is type O as well. I came into the hospital at 5:45 AM in order to avoid meeting the donor. He came into the hospital at 6:15 in order to avoid meeting the recipient. To my knowledge, there were no other kidney transplant surgeries that day. These things happen…. Interestingly, they had found out who her donor was as well, on the very day of her surgery. I will still send a thank you card “anonymously” via the hospital, but it’s quite something to look into the eyes of someone who gave you an organ out of his own body that is making a significant difference in your life.
As much as I have been getting good news at these clinic appointments, no one really likes to spend a lot of time at the hospital as a patient. Initially, I was going in twice a week. Yesterday marked the first appointment that was at the once per week level. I expected that to go on for a few more weeks, but the doctor who saw me said that I was doing so well I didn’t need to come in until two weeks later. If they’re happy, I’m happy.
None of this would be possible without a lot of help from a lot of people. At my first clinic appointment, Etsuko accompanied me the whole time, something like 4 1/2 hours. Since then I’ve gotten stronger, and we haven’t felt it necessary that she be with me through the whole appointment. She arranged for a number of people from church to pick me up after my appointment is done, so that she can make her way to work after dropping me off at about 7:30 in the morning. I’m grateful for rides from Enos K., Tim F., and Jake F. these last few weeks. Of course, Etsuko has had to pick up slack in other ways, too. I don’t have much energy to cook these days (I never realized how taxing it was to stand in front of the range until now), so after coming home from work, Etsuko makes supper, too, something that I have generally done. The same goes for any of the other household tasks that I have generally contributed to.
Our oldest daughter, Rika, even came in from Toronto one weekend to look after me while Etsuko and our son Aaron went down to Virginia with our third daughter, Aisha, to help her move in as she begins her Master of Architecture program at the University of Virginia. Rika, in addition to being a brilliant junior associate lawyer is also a pretty good cook. She even made kale tasty (my opinion about kale has been significantly
warped shaped by comedian Jim Gaffigan’s rant about kale in his Obsessed video — here it is from Youtube!).
Aaron, currently living at home following the completion of his M.A. in History here at “Western” (University of Western Ontario) has also been helpful, often doing errands for me that I simply can’t accomplish these days. For instance, today, he picked up a prescription for me. Really, I don’t know what I’d do without the support of my family.
On Friday, July 29, I received a transplanted kidney from a living donor. The surgeon who performed the surgery was Dr. Alp Sener, urologist at the University Hospital, London Health Sciences Centre, London, Ontario. My new kidney immediately began producing urine so Dr. Sener removed the catheter that had placed in my belly for peritoneal dialysis two years earlier. Yay! No additional surgery required.
My surgery did not begin until 2 pm, even though I had to be in the hospital at 5:45 am that morning. The medical staff needed to know that I was not ill so that they could go ahead with the removal of the kidney from the donor. It made for a long wait for me, and for my wife, Etsuko, and four children, Rika, Keila, Aisha and Aaron, and for two people from Valleyview Mennonite Church, Alvin M. and Erma K.
The last thing I remember in the operating room before the surgery was that there was a mask placed over my face and I was told to breathe deeply to take in lots of oxygen. Eventually, they must have introduced an anesthetic, because shortly after… I was awake in the Transplant Unit. The four hours of surgery and two hours in the post-surgery recovery area took no time at all by my reckoning.
Since then, one of my main accompaniments has been pain. Having one’s belly cut into is not a minor event. I didn’t sleep much that first night; I know that because a nurse came in and checked me out every hour. Not surprisingly, given we are dealing with a kidney, is that they wanted to see how much urine I was producing. It looked a lot like cranberry juice during those first days.
I’ve been told that one of the keys to a quick recovery is to get the patient moving. So, the next day, I was helped to sit up and make my way to the chair in my room a mere two steps away. It seemed like an almost impossible accomplishment. Then they brought in a scale and I had to stand up and step onto that device. For a guy who had been walking 8-10 kilometres almost every day for the last few years, these small actions seemed like quite a comedown, and yet they were as strenuous as anything I had faced in a long time. From there I graduated over the next few days to a 20 metre jaunt and eventually multiple laps around the unit.
A transplanted kidney likes to be “wet.” Completely contrary to my time on dialysis, then, instead of moderating my fluid intake, I was told to drink a lot, at least two litres of water per day, and on top of that, they were pumping fluids into me via IV throughout the first few days of my stay. When I woke up one morning, I was puffy from top to bottom, including my eyelids. Not a pleasant feeling. I had also gained 10 kilos of water weight. I’m pleased to say that excess water is almost all gone now, though, which makes for a much more comfortable body.
I’m so grateful for all the visitors, several people from church as well as neighbours. I can’t say enough about the importance of that kind of support. On top of that, we are so fortunate to be living nearby the hospital so that visits from my wife and my two London-based children were a possibility. Transplant patients in London come from all over Ontario, which makes that kind of support more of a challenge for those who come from farther away.
Our public health care system is often criticized, but I have to say that my experience has been better than anything I could have expected. The care of the nurses, the twinkle in the eyes of the doctors when they came in day after day, telling me that my new kidney is functioning so very well, the staff who organized this wonderful thing called Paired Kidney Donation. As I heal, I know that I am going to be freer and healthier than I have been in decades. What other response can there be than gratitude?
I don’t know who donated a kidney directly to me, and I am not meant to know. Patient confidentiality is an important value in the transplant system. But I will write a letter of thanks. Someone I do know is a friend in British Columbia who was willing to enter into the Paired Kidney Donation program, which allowed me to receive a kidney from another living donor. As I understand it, his donation will take place next month, in September. Again, how can I express sufficient gratitude for what he is about to do? There was another friend in BC as well, who was willing to donate, but ultimately was not selected. This willingness to undergo surgery and weeks of recovery in order that I might regain health expresses a degree of altruism and generosity that I find hard to comprehend. What else is there to say to these people except:
Yesterday, Monday, July 25, was round two in my series of appointments in anticipation of my kidney transplant surgery on Friday, July 29.
As University Hospital is, as the name indicates, a teaching hospital, I have been asked to be involved in a research project. We’ve probably all heard about the good bacteria in our gut, routinely promoted in yogurt commercials. This research project will investigate the impact of a transplanted kidney, with its own bacteria, into the transplanted person’s gut.
This research project of course meant more blood work, so I once again had blood taken from me. And once again, the bloodletting started in one hand and finished in the other. After a couple of hours in the air conditioned hospital, my veins were not terribly accessible. One nurse saw me coming in and said that she was happy that she was busy at the time, thinking that she would therefore not be the person to attempt to draw my blood. However, by the time the requisition was processed, she turned out to be the lucky one, and got the first crack at me. To quote another nurse, I’m a “nice enough person,” but I guess drawing blood from me doesn’t often happen very easily.
I heard that drawing blood will not be that difficult once the surgery is done. Speaking with a nurse in the living donor program, I learned that a “central line” will be established in my neck(!) which will allow blood to be drawn and meds to be injected without repeatedly poking me with a new needle. I have this image of myself as looking like some kind of Frankenstein’s monster. As long as they don’t have to bring me back from the dead, I’ll accept a bit of a monstrous look for a little while. In fact, I saw a young woman at the hospital a few weeks ago who was there for a post-transplant clinic appointment. She had been discharged from the transplant unit just the week before and looked not at all monstrous.
One of the most interesting and sensitive things that I learned about living kidney donation has to do with the confidentiality of the donor and the recipient. I have friends in British Columbia, known to me, who are willing to donate to me but who are incompatible blood types. One of them will therefore donate to someone in need locally but they will not know or meet that person. Likewise, I will not know or meet the person who donates to me. In fact, the hospital will take some pains to maintain confidentiality. For example, my family and the donor’s family will be in separate waiting rooms in the hospital. If discussing the surgery with anyone else during the day of the surgery, I will be undergoing the more generic “abdominal” surgery rather than transplant surgery.
So, what can I do to say thanks? I can write a letter. The social worker with whom I spoke suggests that I write a letter to the donor, keeping everything anonymous and without any personally identifying information. Then, with the social worker having my name and the date of the surgery, she can deliver the letter to the donor.
This is actually a fascinating area, apparently. Apparently, some families of donors and recipients have chatted casually while getting coffee at the Tim Horton’s in the hospital and have almost inadvertently made connections. At other times, especially in the case of deceased donors, some recipients or their families have combed through the obituaries of area newspapers in efforts to identify their donors.
Finally, I want to mention the intended schedule. I have to be at the hospital at 6 AM on Friday morning. However, I won’t actually have my surgery begin until about 1 PM. I do have to be there early in the morning, though, because the surgeon will not begin operating on the donor until my health has been determined to be adequate for surgery that day. If I show up at 6 AM with a fever, they are not going to proceed. It’s going to be a long day.
Three days to go! Thanks for all your support.
That’s kind of how my day went yesterday. I went to bed early Sunday evening so that my full eight-hour dialysis session could be completed in time for me to make it the hospital according to my appointments.
As I think I’ve mentioned before, I live near the University Hospital, where London Health Sciences Centre’s Transplant Unit is located, so I walked there. My first appointment was scheduled for 7:30 AM, but I had to first register as an outpatient for the day, so that meant getting there at 7:15, which meant leaving the house at about 6:30 AM. Suffice it to say, in order to get out of the house on time, I got up while it was still dark.
The first stop was to cardiology, where two tests were run, an echocardiogram and an ECG (electrocardiogram). I don’t yet know about the results of the first test but the ECG was “normal,” which is good. (Unlike at Lake Wobegon, the goal is not to be “above average”).
The next stop was to the lab to give some blood samples. I’ve been going to this same lab location at least monthly for the last two years for dialysis blood work so the nurses knew me and recognized the significance of me coming in for a different set of tests. The funny thing, though, was that, until now, they were having to draw blood out of the veins in my hands so as to “save the arm veins” for any potential need for hemodialysis in the future. Since, that seemed to no longer be a concern, we agreed she could take the blood out of my arm. Unfortunately, thanks to spending a great deal of time in the cool air-conditioned hospital, the veins in my arm were less accessible than usual and she couldn’t get to them. So, back to the hand vein. But, there were so many tubes to fill that the blood stopped coming in the one hand. Another nurse came over and they coaxed the last little bit out of my other hand. Thanks to an injection of gas into my arm earlier during the echocardiogram, I wound up with bandages on both arms and both hands! Another man in the lab was looking on at me somewhat aghast. When all was said and done, it wasn’t all that bad and I managed to leave under my own steam. No fainting, etc.
Following a routine chest X-Ray, I done for the morning. In the afternoon, I had three appointments. The first was with the pharmacist who reviewed three anti-rejection drugs with me that I would most likely be prescribed. If you’ve ever seen those drug commercials that are on American TV channels, that extol the virtues of the drug before highlighting all the unwanted side effects, that is a little what this appointment felt like, minus all the beautiful scenery and marketing glitz. One of the positive pieces, though, is that likely a number of drugs I take now will be discontinued. On the negative side, the anti-rejection drugs will compromise my immune system somewhat, which will make me more susceptible to, among other things, skin cancers (although such skin cancers tend to be of the more treatable type), so I guess it’s good that I live in the snow belt and will be covered up for several months of the year.
My last appointment was with the surgeon who will do the transplant. He was very busy yesterday so I waited quite a while to see him, but I finally met Dr. Alp Sener. He came across as warm, personable, and very intelligent (that probably goes without saying for physicians who have a PhD and an MD). I was delighted to hear that, if the kidney is functioning well right after it is transplanted, that he would proceed to remove the peritoneal dialysis catheter during that surgery. Although peritoneal dialysis has maintained my health in a way that I could not have experienced otherwise, plugging this line that comes out of my body into a machine every night is not only a physical tethering; it feels symbolically like I am tied down and restricted.
Having said that, it is a restriction worth putting up with, given the alternatives that were available to me. I remember that not everyone has the benefit of the kind of medical care that I am receiving, almost entirely paid by our taxes, so that we don’t have to choose between life and poverty. For those in different circumstances, such option may not even exist. It is a reminder to be grateful for the many gifts that I have, by virtue of living where I do.
My final appointment was to have been with the Transplant Unit’s Research department. In fact, it had gotten so late in the day that I simply forgot about it and went home. I had left home at 6:30 that morning, and didn’t get home until 5:30 that evening. It had been a long day. I have another series of appointments later next week, so I expect my meeting with Research can be rescheduled.
With all that walking and all those meetings, I slept very soundly last night, which has been rare for me since beginning dialysis.
I’ll conclude with the request that, if you have not yet registered as an organ donor, please go to this page, locate the link for your province, and take the very few minutes that it requires to become an organ donor. Thanks.
Amazing news! A little over a week ago, the transplant coordinator here at the London Health Sciences Centre called to tell me rather cryptically that they were “working on something” (I may be paraphrasing slightly). Then in a series of phone calls last week, I was informed that a match had been found locally thanks to an undesignated donor who had stepped forward and set some “dominoes tumbling.” Among those dominoes was my own.
The context of this news is quite amazing because just last month in June, I had participated in the fourth nationwide Paired Kidney Donation program. And again, no match had been found for me. I was beginning to settle into the idea that I might continue with dialysis for several more years. Now, virtually all of a sudden, I am preparing for a transplant.
What happens next? Beginning early tomorrow morning (Monday, July 18) I will begin a series of tests and other appointments to update some of my medical information that is a bit out of date two years after the initial tests. One of my two friends in British Columbia will likely be donating at around the same time, too. I don’t have all the details about that side of things, but I understand that, potentially, the recipient in BC is someone with high immune sensitivity, such that finding a suitable donor is quite difficult.
Assuming all goes well, the donating and receiving parties are willing and healthy, on Friday, July 29, I will be getting a new kidney from a living donor. This is the ideal situation because kidneys from living donors tend to have a longer life (15-20 years) compared to an organ from a deceased donor (10-15 years) and they usually have fewer problems starting up once the transplant is complete.
Following the transplant, I will remain hospitalized for five to seven days before being released back to my home. That means I will spend the August long weekend civic holiday in the hospital. It’s a “sacrifice” I’m willing to make.
Thereafter, I will be attending frequent clinics. There will of course be a new drug regimen for me, particularly to do with anti-rejection drugs so that my body and my new kidney play nice with each other. This is no minor matter as I was told in no uncertain terms that taking those drugs at the prescribed time is imperative. I have every intention of complying!
My emotions have been all over the place in the last few days. The anticipation of freedom from dialysis, the realization that in a short while I won’t have to plug into a machine at night and unplug in the morning, is quite overwhelming at times. The palpable enthusiasm of the transplant coordination staff with whom I have been speaking on the phone these last few days is also quite something that I’m not sure I have words to describe. But throughout this experience, I have always felt like the medical teams that have been caring for me have uniformly treated me like a person, as much more than a statistic, even though nephrology is a medical discipline that is largely driven by the analysis of medical data. I am very grateful.
Most importantly, I think of the commitment shown by my friends in BC and this undesignated donor locally who have responded to a need in a remarkably selfless manner, and who, because of their commitment to this task, will have changed the lives of many people.
I will keep you posted as the day approaches. To those who read this, thank you as well for your words of encouragement, by whatever means. This morning, I shared this good news in church, and everyone clapped! (We’re not generally all that big on clapping in our church…). It feels good to have that kind of broad support from the various communities to which I belong: church, friends, social media connections, etc. And, if you are inclined to pray, I welcome that, too. Thank you.
Despite the fact that 90 percent of the Canadian population is in favour of organ and tissue donation, less than 20 percent have registered as donors. Since our deaths come about in a variety of ways, not every death will result in a situation where transplantable organs become available. It is therefore rather disheartening to read that family members are blocking organ donations from their deceased relatives even though the deceased has registered as an organ donor.
Unfortunately, that is the story presented in an article in The Toronto Star. I invite you to read the article below and then, if you have not done so already, register as an organ donor (in Ontario at http://beadonor.ca/). Once you have registered, please tell your loved ones of your decision, so that, if a tragedy occurs, they will know what to do when they are approached about confirming your desire to be an organ donor.
By MICHAEL ROBINSON Staff Reporter
Thu., June 16, 2016
Grieving families are blocking the organ donations of one in five Ontarians who registered to donate before they died, the Star has learned.
Data obtained by the Star from the Trillium Gift of Life Network reveals how often opportunities for potentially life-saving transplants are lost because of family objections — a number that has steadily risen over the past three years.
Whitby’s Colin Arnott said he was “surprised” when asked by Trillium representatives to “reaffirm” the consent of his brother, a registered donor who died following a stroke in 2013.
“They told us Ken had signed his donor card — I didn’t know he had — and asked us if it was true those were his wishes,” he said. “I was surprised why they were asking us to affirm his decision if he already filled out the forms and signed his donor card.”
Like the majority of families, Arnott gave the go-ahead for his relative’s donation to move forward. Yet provincial data shows the number of cases where families step in to quash a loved one’s donation is rising.
In 2013, the province’s organ and transplant registrar recorded 14.5 per cent of families (representing 26 registered donors) who refused consent, a number that climbed to 21.1 per cent (62 donors) last year.
Click here to read the rest of the article.
An increasing problem in Canada is the growing gap between the number of people who are waiting for an organ transplant and the availability of donor organs. There are a number of reasons for this shortage of donor organs, not all of them easily solvable. However, there is one thing that can be done that is not being done at this point: establish a national organ donor registry. Currently, organ donor registries are handled at the provincial/territorial level. This means that otherwise compatible donor-recipient pairs are missed and potentially lifesaving organ transplants go undone.
Into this breach has stepped Ziad Aboultaif, a Member of Parliament from Edmonton Manning. On February 19 he introduced a private member’s bill, C-223, The Canadian Organ Donor Registration Act, which would create a national registry.
You can see a video of him introducing his bill here: https://www.youtube.com/watch?v=bWBlxXZyj_k
Mr. Aboultaif is doing this not merely because it is eminently good policy. His son has experienced liver disease and has undergone three liver transplants, including the first one when Mr. Aboultaif donated a part of his own liver. Here is an article from the National Post which describes the Aboultaif family’s harrowing journey as well as the deficiencies in Canada’s current patchwork of registration systems: http://news.nationalpost.com/news/canada/canadian-politics/conservative-mp-to-table-bill-calling-for-national-organ-donor-registry-after-transplant-saved-his-son
Below is a letter from Mr. Aboultaif to supporters of his bill. Please read it. You will note that the bill is coming up for a second hour of debate on Monday morning, June 13. If successful, it will be passed on to the Health Committee, from which point it has a good chance of becoming law. However, this is a “Private Member’s Bill.” It was not introduced by the government and so it lacks those supports that make passage into law a relatively routine matter. It therefore needs the support of as many MPs in the House of Commons as possible.
I urge you to contact your MPs, whether by email or by telephone, to ask them to support passage of Bill C-223. Monday is a make or break day for this bill and it has the potential to make a major difference in organ donations in Canada.
If you aren’t sure how to contact your MP, follow this link: http://www.parl.gc.ca/Parliamentarians/en/members
You can “refine your search” for your MP on the right of the page, and if you are still having trouble, let me know and I will do the search for you.
You have expressed interest and support for Bill C-223, The Canadian Organ Donor Registry Act, something I very much appreciate.
This is an issue I am passionate about from first-hand experience. I am myself an organ donor, having made a donation of part of my liver to my son Tyler in 2003. That was the first of three liver transplants Tyler received, with the two subsequent ones coming from deceased donors.
From my family’s experience, I became acutely aware of the need for a more coordinated national effort in this area. Each year more than 200 Canadians die while waiting for an organ transplant. This Bill will not only improve inter-provincial communication, which is crucial in time sensitive transplant situations, but will also raise awareness of the need.
Canada’s organ donation rate is among the world’s worst. More than 90% of Canadians support organ and tissue donation in theory, but less than 25% have made plans to donate. While some provinces have a large percentage of citizens having indicated they wish to be organ donors, others have very few, far below the national average.
This is not a partisan issue. Yet during the first hour of debate on this Bill, in April, it did appear that support for this Bill was divided on party lines, with the Liberals opposed. Given the Liberal majority in the House of Commons, should Liberals not support this legislation it will be defeated and this opportunity to do something good for all Canadians will be lost.
On Monday June 13, at 11 a.m. EDT, the House of Commons will again consider Bill C-223. You can watch the debate live on CPAC and online at www.cpac.ca. This is the final time the Bill will be debated before Parliamentarians vote whether to send it to the Health Committee for further study.
If you would like to help, I encourage you to contact your Member of Parliament, especially if he or she represents the Liberal Party, and ask them to support this legislation. If improvements are necessary they can be made at the Committee stage, but that cannot happen unless MPs support it now. Please feel free to forward this letter to family and friends.
It is not being melodramatic to say that lives are at stake. Please let your MP know that.
Ziad Aboultaif, MP
Official Opposition Critic for National Revenue