Tag Archives: altruism

One Week Post-Discharge from the Hospital

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.

Dr. Alp Sener

Dr. Alp Sener

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?

University Hospital, London Health Sciences Centre

University Hospital, London Health Sciences Centre

One diagram showing how an undesignated donor can make a difference in many lives.

One diagram showing how an undesignated donor can make a difference in many lives.

A quilt of donors hanging in front of the Transplant Unit, showing both living and deceased donors.

A quilt of donors hanging in front of the Transplant Unit, showing both living and deceased donors.

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:

Thank You!

Russ

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Jumping Through More Hoops

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.

Good-Vs.-Bad-Bacteria

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.

It's a joke! The women who take my blood are always kind to me!

It’s a joke! The women who take my blood are always kind to me!

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.

'Okay, Mom. I'm sorry I re-gifted one of the kidneys you gave me.'

‘Okay, Mom. I’m sorry I re-gifted one of the kidneys you gave me.’

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.

'How's that kidney transplant going?... I need him back on the field - pronto!'

‘How’s that kidney transplant going?… I need him back on the field – pronto!’

Three days to go! Thanks for all your support.

I am getting a kidney transplant!

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.

'I'll see you kidney and raise you my liver.'

‘I’ll see you kidney and raise you my liver.’ (I wonder if by “working on something” they meant this…)

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.

Please contact your MPs: A Canadian Organ Donor Registry

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.

Thank you,

Russ Sawatsky

*****

Dear Supporter,

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.

Sincerely,

Ziad Aboultaif, MP

Edmonton Manning

Official Opposition Critic for National Revenue

*****

 

Nine patients receive life-saving transplant surgery over Easter weekend

This article is a publication from the London Health Sciences Centre here in London, Ontario. The surgeries occurred at the University Hospital, a mere 30-minute walk from my home, but similar surgeries also take place across the country. As it is currently National Organ & Tissue Donation Awareness Week (April 17-23) in Canada, this seems an especially good time to read –and act on — the information presented here. Click here or on the title immediately below to be taken to the original story.

Nine patients receive life-saving transplant surgery over Easter weekend

April 20, 2016


Thanks to the generosity of families across the country, LHSC’s Multi-Organ Transplant Program had an unprecedented Easter holiday weekend, transplanting 11 organs into nine different patients.

While many staff and physicians spent time with family over the holiday weekend, it took a dedicated team to help save so many lives – the operating rooms at University Hospital barely stopped during the entire weekend with more than 72 hours required for those transplant surgeries.

This incredible success is being celebrated during National Organ & Tissue Donation Awareness Week (April 17-23), which encourages Canadians to register their intent to become an organ donor and to have a conversation with their loved ones about their decision.

In total, between nine patients, LHSC teams transplanted one heart, three livers, one combined kidney/pancreas, one double kidney and three single kidney transplants.

“This would not have been possible without the collaboration of many departments who worked together to ensure a successful outcome for these nine patients. It was an extraordinary accomplishment and we are fortunate to have such an outstanding transplant team here in London.” says Dr. Anthony Jevnikar, co-director of the Multi-Organ Transplant Program.

“I want to thank all those individuals who gave up time with from their families over the holiday weekend to ensure these nine patients received their life-altering transplant surgeries. More importantly, I’d like to thank the donors and their families for giving this gift of life.”

If you have not yet registered your consent to become an organ donor, visit beadonor.ca/lhsc – it just takes two minutes and your health card. Anyone over the age of 16 can register and people of all ages and medical histories should consider themselves potential donors. And even if a person has signed a donor card, they still need to register online or by visiting a ServiceOntario centre. Donor cards are no longer used in Ontario.

“Our region is fortunate to have some of the highest organ and tissue donor rates in Canada, but there is room for improvement. I encourage everyone to register their consent to donate, and just as importantly discuss their wishes with family members,” says Dr. Jevnikar.

The Ineluctable Logic of the Paired Donation program

The Ineluctable Logic of the Paired Donation program

I have gone through three rounds in the Kidney Paired Donation (KPD) program, two of them teamed with two willing but incompatible donors. No match has been found for me. With some time on my hands, I began to think about the likelihood of a match being found. Based on blood type distribution alone, here is what I have realized.

First of all Rh (+/-) does not matter when it comes to organ transplants so I’m combining the Canadian statistics for Rh positive and negative factors into one:

Blood Type

O A B AB
Percentage 46 42 9

3

As you can see, Type O is the most common, followed closely by Type A.

Second, let’s take a look at which blood type can donate to which blood type:

Donor Type

O A B AB
Recipient Type O, A, B, AB A, AB B, AB

AB

On the donor side, note that Type O can donate to any recipient type. On the recipient side, note that AB can receive from any donor type. Note further that Type O can only receive from a Type O donor.

So, let’s put these statistics together and consider them in light of the fact that I am a potential Type O recipient and my friends are potential Type A donors.

On the face of it, it doesn’t look that bad. I can only receive a kidney from a Type O donor but that is the largest blood group so I have a relatively large pool to draw from. Furthermore, my potential donors are from the second-largest blood group so you would think that there would be substantial demand for a kidney donor with Type A blood. The paired donation program should work well.

That is not the case, however. Let’s imagine that someone with Type A blood needs a kidney transplant. She makes it known to her friends and relatives. Since she can receive a transplant from a Type O or a Type A donor, she can draw on 86% of the population. Consequently, it is less likely that she will need to enter the KPD program. There is therefore relatively little demand for Type A donors (my two friends) within the KPD program. The possibilities for an exchange seem less likely.

Now consider someone with Type O blood who needs a kidney transplant (me). He can only receive a transplant from a Type O donor. But let us further consider that the Type O donor can donate an organ to any blood type. A type O donor, if he becomes aware of a friend or relative who needs a kidney, can donate to that person directly, irrespective of the recipient’s blood type, so there is no need to enter the KPD program in order for the friend to receive a compatible kidney transplant. There is therefore relatively little supply of Type O donors in the KPD program.

The ineluctable (always wanted an occasion to use that word) logic of the KPD program is that my situation of being a potential Type O recipient, even with two potential Type A donors, means that the chances of a match on the basis of blood type alone are vanishingly small.

The Saving Grace

However, there are in fact Type O potential recipients who have been matched in the KPD program. The saving grace, if that is the right term, is that blood type is not the sole determinant of compatibility. We carry antibodies within us and these antibodies complicate the matching process. A potential recipient might carry antibodies that will attack the otherwise compatible Type O kidney were it to be transplanted into a given person. For that reason, there are potential Type O donors and potential Type A recipients in the KPD program, and enrolling in the program is not a hopeless or lost cause. It just means that I may have to stretch out my expectations when it comes to how quickly a match will be found.

Is there something that can be done about this? Well, I am not one to approach others directly to ask to have themselves tested as possible living donors, but if you have not yet done so, please register as an organ donor. We are, after all, mortal beings, and once we are dead, we have no more need for our organs. Consider such registration a basic part of your will and estate planning, and consider as well, that you have within you the potential to save up to eight lives. Isn’t that a legacy worth leaving?

Links:

For the Kidney Paired Donation program:

https://www.blood.ca/en/organs-tissues/becoming-live-kidney-donor

To register as an organ donor upon your death (select the link to your province):

http://www.cantransplant.ca/home/organ-and-tissue-donation-consent/

 

New Procedure Allows Kidney Transplants From Any Donor

I’m reposting this article from the New York Times. Thanks to Teresa Thompson Sherrill for passing this on to me.

This procedure still appears to be at the experimental stage and is therefore not widely available. However, I am reminded once again that medical science continues to make progress in the world of organ transplantation. Even though there is an element of waiting in limbo while I continue on peritoneal dialysis, I have reason to believe that the outcome of a kidney transplant in the future will likely be better than that same transplant done in the past.

Here’s the article. Read it and be encouraged.

New Procedure Allows Kidney Transplants From Any Donor

Clint Smith, at home in New Orleans, had a procedure that altered his immune system to allow his body to accept a kidney from an incompatible donor. It “changed my life,” he said. Credit William Widmer for The New York Times

Clint Smith, at home in New Orleans, had a procedure that altered his immune system to allow his body to accept a kidney from an incompatible donor. It “changed my life,” he said. Credit William Widmer for The New York Times

In the anguishing wait for a new kidney, tens of thousands of patients on waiting lists may never find a match because their immune systems will reject almost any transplanted organ. Now, in a large national study that experts are calling revolutionary, researchers have found a way to get them the desperately needed procedure.

In the new study, published Wednesday in The New England Journal of Medicine, doctors successfully altered patients’ immune systems to allow them to accept kidneys from incompatible donors. Significantly more of those patients were still alive after eight years than patients who had remained on waiting lists or received a kidney transplanted from a deceased donor.

The method, known as desensitization, “has the potential to save many lives,” said Dr. Jeffery Berns, a kidney specialist at the University of Pennsylvania’s Perelman School of Medicine and the president of the National Kidney Foundation.

Click here to read the rest of the article.