Tag Archives: dialysis

Another Kidney Transplant for a Co-Worker and Friend

A while after I went onto dialysis in 2014, I learned that a co-worker of mine, Rehana, had also been dealing with kidney disease for decades and had recently begun hemodialysis. Yesterday, I learned that last Sunday, January 22, she had undergone a kidney transplant here in London, Ontario at University Hospital, the same hospital where I had my transplant surgery.

Unlike in my case, Rehana received a kidney from a deceased donor. As is sometimes the case when receiving a kidney from a deceased, rather than a living, donor, Rehana has had to continue with dialysis for the time being, as the transplanted kidney has yet to “wake up.” This delay is not entirely uncommon, but naturally it is a situation that is not ideal. Please join me in hoping and praying for Rehana that her kidney will wake up soon so that she can begin a new life free of dialysis and continue her recovery at home.

Finally, allow me to encourage you to register your consent to be an organ donor so that you can leave a legacy after your death of making a profound difference in the life of someone in need. Find the link to your province or territory here.

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

A somewhat oddly timed thanksgiving

Two months ago, in September, Gerald Neufeld donated a kidney to a person in need in British Columbia, closing the loop on the Paired Kidney Donation program that we had entered into, he as a donor and me as a recipient. This is the first time I have mentioned Gerald’s name in any of my blog posts. The transplant coordinators generally want to keep these matters confidential for the first several weeks following the actual transplant. Sadly, sometimes if direct donors and recipients find out about each other, the altruistic nature of the donation can become a bit weird. But, enough time has passed that I have been released from this constraint.

Gerald Neufeld, my donor in the Paired Kidney Donation program.

Gerald Neufeld, my donor in the Paired Kidney Donation program.

Rie Neufeld, Gerald's wife and among many other things, caregiver following Gerald's kidney donation surgery.

Rie Neufeld, Gerald’s wife and among many other things, caregiver following Gerald’s kidney donation surgery.

 

 

 

 

 

 

 

Before I go on, I want to mention once again another person in British Columbia, someone I had known for many years, who had also volunteered as a donor for the paired exchange program. Ultimately, I only need one kidney to thrive and therefore only one donor, and so this other friend did not become a donor. Nevertheless, I wish to thank him for his willingness, along with his wife for her support. The encouragement I received, the depth of emotion I felt whenever I spoke with him as he accompanied me on this journey across thousands of kilometres, will remain in my heart forever.

Back to Gerald. Gerald’s connections with me and Etsuko are perhaps not quite as old, but they are every bit as significant in a different way. We shared some years together as former missionaries in Japan. As with me and Etsuko, Gerald also met his wife Rie on the other side of the Pacific. And although we didn’t have a whole lot to do with each other at the time, several years earlier we even spent a year together as fellow students at Canadian Mennonite Bible College (now Canadian Mennonite University) in Winnipeg. Who would have thought that so many years later (we returned from living in Japan a final time in 2000) we would establish a new life-transforming connection like we have experienced in 2016.

In the caption below Rie’s picture, I mentioned that Rie was Gerald’s caregiver following his surgery. Although Gerald was discharged from the hospital in a timely manner, recovery is something that still takes a number of weeks before a return to work is possible. For that reason, Gerald received support from his employers, Emmanuel Mennonite Church in Abbotsford, BC, where he is music coordinator, and the Mennonite Japanese Christian Fellowship in Surrey, BC, where he serves as pastor.

Thank you, Gerald and Rie, thanks to your three children, and thank you to your church communities for all that you have done, not just for me, but also for raising awareness of the need for organ donation.

I will add a small note about my situation these days. Recovery from the blood clot in my right leg continues but I hope to have that fully resolved by December. Last week I went to the kidney clinic as I have been doing every two weeks for quite some time. After reviewing the results of my blood test, the nephrologist I saw that day pronounced me fit and said that he wanted to see me next in two months! And then he told me that he would have suggested three months except that he was concerned it would “freak (me) out.” It almost did. Wow. By then it will be just short of the six month anniversary since my transplant.

I really am making progress. This past Friday, Etsuko and I went to Sarnia (about an hour west of London, ON) for an overnight stay at a hotel and a very pleasant walk along the waterfront. Friday was apparently the last nice day before winter began to settle in, but one of the main reasons we went away on this little trip was because we had to burn up some Air Miles before they expired at the end of this year (yes, we are among the many Canadians forced to use our points whether we want to or not). It turned out to be a great day, and it was my first time away from home in two years without having to haul along a bunch of equipment and supplies for dialysis. What a sense of liberation that was.

So, lots of reasons to be thankful! But today I want to say I am mostly grateful for people like Gerald, people willing to be living donors, as well as those who support them. Not everyone is willing to be a living donor, or even if willing, able to take such a step because of health limitations, but today you can register as an organ and tissue donor following your death. Here is the URL that provides links to all of the provincial and territorial donor registration sites: Canadian Transplant Society. Please register and make a difference. Thank you.

 

At 18 years old, he donated a kidney. Now, he regrets it.

This article  was originally published in The Washington Post on October 2. This is not an article I am particularly fond of. A living donor now regrets the decision he made at age 18. As the recipient of a kidney via living donation, and knowing of at least a couple of people who were willing to donate a kidney anonymously (sometimes referred to as an undesignated or altruistic donation), it troubles me that Mr. Poulson now regrets his decision. It also troubles me that living donors may be putting their lives at risk beyond the immediate risk of the surgery itself. Even so, I think this is worth reading the perspective of a young living donor. Please note that this is article is particularly applicable to the US context.

You may or may not want to read the comments following the article, however. Some are disheartening and mean-spirited. Others are encouraging.

By Michael Poulson
When I was 18, my stepfather’s brother had been on dialysis for just over a year. He was thin, he exercised regularly and he seemingly was in perfect health, but inexplicably his kidneys began to fail him. Although I was just about to leave for college, I’d heard enough about the misery of dialysis to decide to get tested as a possible donor. In the back of my mind, I knew that the chances of our compatibility were incredibly low because we were not related by blood. Perhaps that made it easy for me to decide to get tested.

When we received the results, I was stunned to find out that he and I were a match. The transplant team gave me plenty of opportunities to back out of the donation, and it put me through countless evaluations, physical and psychological. Much of my family was steadfast against my becoming a donor. Looking back, who could blame them? Their son-grandson-nephew was going to undergo a major operation with no benefit to himself.

However, I continued to be confident in my choice. I relied on the one fact that would be repeated to me many times: “The rate of kidney failure in kidney donors is the same as the general population.” Why wouldn’t everyone donate a kidney, I wondered.

My mother was the only one to — reluctantly — support my decision. She accompanied me to San Francisco, where the surgery took place, and we settled in for the weeks that I would spend recovering. On the day of the surgery, anesthesia flowed into my arm and the world swiftly slipped away. Then, just as quickly, it seemed, I awoke, nauseated and confused. So much preparation for such a short nap. The anxiety I’d felt about the surgery was now gone — as was one of my kidneys.

An uneventful recovery came and went. I returned to college and resumed a normal life. Likewise, my step-uncle did very well and is living a full and healthy life, as is my donated kidney.

Michael Poulson regrets giving that kidney away. (University Photo)

Michael Poulson regrets giving that kidney away. (University Photo)

Five years after the surgery, when I was 23 and getting ready to go to medical school, I began working in a research lab that was looking at kidney donors who had gone on to develop kidney failure. For that research, I talked to more than 100 such donors. In some cases, the remaining kidneys failed; in others, the organ became injured or developed cancer. The more I learned, the more nervous I became about the logic of my decision at age 18 to donate.

Click here to read more…

 

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.

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.