Tag Archives: peritoneal dialysis

Transplant One Year Anniversary

One year ago, on Friday, July 29, 2016, I received a life altering kidney transplant from a living donor. Once again, I write in humble gratitude for the willingness of two friends in British Columbia to put their names forward as donors, with Gerald Neufeld being the one who finally was the one to “go under the knife.” I think as well of the tremendous care I received while in hospital, and of the loving support of my wife Etsuko, and my four children, Rika, Keila, Aisha and Aaron, who were with me during that day. There were also friends from church as well as friends from our neighbourhood who visited with me and my family before, during and/or after the surgery.

A lot has happened in the last year, much of it documented in this blog (“shout out” to Robert Chute — check out some of his books on Amazon — for helping me to get this little publishing venture off the ground). I seem to have become a “normal” person again: working 9 to 5 at the same place I had been before I went on dialysis — and that’s all right. In fact, I feel more “normal” than I have in 33 years when I was first diagnosed with kidney disease: no high blood pressure, no excess swelling or carrying around extra weight because my kidneys were not able to do the job, no tube coming out of my belly (I’ll avoid attaching the graphic photos for now) nor the related hooking up to a dialysis machine every night. I could go on. 

Thank you for your support, and thank you to every person who has registered as an organ donor.

I’ll post something again as the day gets closer and as I get my donation page a little more up-to date, but allow me to wrap this up by mentioning that I will once again be participating in the Kidney Walk in London, a fundraising event for the Kidney Foundation of Canada.

A recent photo of me wearing my Kidney Walk t-shirt from 2016.

Infographics about Kidney Disease and Organ Donation

Here are a couple of recently published “infographics” that contain some stark information about kidney disease and organ donation, courtesy of the Kidney Foundation of Canada. Given the increasing prevalence of organ failure in general and kidney disease in particular, it’s quite likely that this is more than mere statistics. Beyond myself, you may very well know someone else among your friends and extended family who is dealing with a disease that may ultimately lead to life-threatening organ failure.

Thanks for your support,

Russ Sawatsky

Another couple of steps forward, but another (half?) step back, too

Happy New Year to everyone. I hope the Christmas and New Year holiday season was enjoyable for everyone. Etsuko and I were pleased that all four of our children could be home for Christmas from their various locations.

Today, January 3, 2017, marks a milestone: I went to work! Well, sort of. I got up as early as I usually do, in order to take various medications at the appropriate time, but instead of hanging around at home after that, I got on a bus at 8:25 this morning and made my way to a TD Bank building where I had been working until the summer of 2014, when I had gone onto dialysis and a consequent disability leave. I “worked” a half-day, 9 am – 1 pm. I use the term “work” somewhat loosely as my main task of the day was to simply begin to get into the routine of going from home to work and back home again. Beyond that, getting permissions set up so I could log onto my computer and access email took a bit of time, and then it was a matter of listening to (“shadowing”) calls that my co-workers were taking. As the days go on, presumably a few other things will be added to expand the range of tasks I can engage in. It will be a “gradual” return to work, so two half-days this week, three next week, and so on until I have reached full-time hours the week of February 20.

I’m actually quite excited about the prospects of returning to work because on February 27, I will be part of the first “wave” of employees who will be training for the licensing exam for the Canadian investment industry. For many years, we served US clients and were thus licensed in the US, not Canada, but now we are “coming home” so to speak.

So, today was the step forward. I can also mention that the blood clot has been successfully resolved with only some minor scarring of the affected blood vessel left to show for it. As for the (half) step back, one of the side effects of the immunosuppressant drugs that I had hoped to avoid has in fact come to pass. Some tests that were done by my family physician show that I now have Type 2 diabetes. It’s not severe, and my doctor just told me to restrain myself over the holidays when it comes to simple carbs (minimize the cookies, cakes and candies…). My situation will be followed up at the end of this month, but even so, I gather that the tests do not reveal a very severe level of diabetes. I am also hopeful that as a reduction in some of my drugs is likely to occur over time, the disease might even subside. In the meantime, I feel fine, which is a great feeling indeed.

cantransplant_logo1

I’m not one to make resolutions at the beginning of each year, but I might ask readers of this blog to resolve to sign up as an organ donor, if you have not done so already. The Canadian Transplant Society provides a helpful page with links to the various provincial and territorial registration sites. Please click here to be taken to the site, and take the necessary steps to register.

Thanks,

Russ

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

Hurry Up and Wait

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”).

KeepCalm

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.

'I'm concerned about the high levels of blood we found in your blood test.'

‘I’m concerned about the high levels of blood we found in your blood test.’

bloodtest

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.

AlpSener

Dr. Alp Sener

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.

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.

February…come and gone

Posts have been a bit thin here recently. Unfortunately, there is not much to report. I was hoping for something to say for February, but no….

To get more specific, February 2016 marked the third time that I had participated in the Living Donor Paired Exchange (LDPE) program. As you may recall, this is a national program run by Canadian Blood Services, to “mix-and-match” incompatible donor-recipient pairs in order to produce a greater number of compatible living-donor kidney transplants across Canada. Two people are willing to donate to me, but neither is directly compatible. In the ideal scenario, through our participation, one of my donors would donate to someone else and the incompatible would-be donor of that someone else, who happens to be compatible with me, would donate to me.

Three times I have participated in this program, and three times a match has failed to be produced. So, I’m left alone with my thoughts, wondering how long I have to wait. And there is a weightiness to that waiting, too. When I learned about the LDPE program, I initially thought that a match would come in short order. Now, I wonder if it might work for me at all, and I also wonder whether I will have to wait for the rather heavy prospect of anticipating that a suitable donor will come out of the tragedy of someone’s death, who knows how many years from now.

Still, with all the waiting and the accompanying weightiness, I continue to find reasons to be grateful. Etsuko and I were able to get away for a few days and drive down south to a (slightly) warmer climate early in February, and on the way back we stopped in Ohio and visited some old friends from our Japan mission days. We were hosted well, and whether in a hotel or in a friend’s home, I was able to set up my equipment for dialysis as needed. It was a bit of a hassle, but we got it figured out. It’s nice to not be housebound.

So, while I am taught a lesson in patience that I’d rather not experience, I am thankful for the many positive things that persist in my life.

To close off this post, I’m attaching a video of U2’s “40,” a version of Psalm 40, which expresses an attitude of both hopeful waiting and gratitude. It seemed appropriate.