Tag Archives: Living Donor Paired Exchange

London Kidney Walk 2016

This weekend, Sunday, September 25, I will be walking in the London edition of the Kidney Walk, a fundraiser for the Kidney Foundation of Canada. Last year was the first time I participated in the Walk. In fact, I hadn’t been aware of it previously, despite 30+ years of living with kidney disease. This weekend, Friday, September 23, to be precise, will also mark eight weeks since I received my transplant.

And, as long as I am marking significant events, this past Monday, my friend Gerald donated one of his kidneys as part of the Paired Kidney Donation program run by Canadian Blood Services. His donation, although after my own surgery, made it possible for me to receive a new kidney. I had the pleasure of phoning him and his wife yesterday, Tuesday, the day after his surgery, and he sounded just fine! Praise God for his tremendous gift. I wouldn’t be where I am now without his generosity.

I’ve made a lot of progress in the last nearly eight weeks, but I still have a ways to go. I get tired very quickly, and a little bit of exertion brings out the sweat in buckets. On the positive side, walking is not that difficult. I’ve already walked more than half an hour at a time on several occasions, so I don’t anticipate any problems with the Kidney Walk. Again, I’ve made progress. Take a look at my vigorous steps two days after my surgery (video courtesy of my long-suffering wife, Etsuko):

With respect to the Kidney Walk, if you are interested in sponsoring me, there is still time to do so online here: Welcome to Russell Sawatsky’s page.

Thanks so much to all those who have already been so generous either with donations or with words of encouragement. They have meant a great deal to me and my family.

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Three Weeks Post-Discharge

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.

The inimitable Bela Lugosi, vitamin D deficient from avoiding sunlight

The inimitable Bela Lugosi, vitamin D deficient from avoiding sunlight

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.

Another graphic explaining one way that the Paired Kidney Donation program works.

Another graphic explaining one way that the Paired Kidney Donation program works.

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.

This photo's a few years old now, but it's the most recent "formal" photo we have.

This photo’s a few years old now, but it’s the most recent “formal” photo we have.

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

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.

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.