Tag Archives: Christianity

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.

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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.

 

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.

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.

 

Grateful for Incredible Friends…and So Much More

At the beginning of this year, a friend of mine in British Columbia (BC) offered to be a living donor of a kidney to me. As it turned out, his blood type was not compatible with mine (I’m Type O) so we both entered the Living Donor Paired Exchange (LDPE) program. The first run in June did not yield a match. The next run of the program will be in October.

To my great surprise and joy, recently another friend from BC contacted me after hearing about my situation and offered to be a living donor as well. He also is not compatible, but his entry into the LDPE program on my behalf certainly wouldn’t hurt, and might actually help with finding a matching donor.

This morning in church, I heard a sermon about gratefulness in the Psalms, based on the recurring theme of chesed (khesed or hesed), God’s loving-kindness. While I suppose I could choose to lament my circumstances (and there are psalms of lament as well), for me gratitude overwhelms lament. Yes, I have this nasty disease which has caused a significant disruption to my life, but there are all kinds of things for which I’m grateful. I don’t cry out to God, “Why did you let this happen to me?!” Instead, I’m grateful that my health held up much longer than originally anticipated (30 years before I started dialysis, rather than 10-15), I happened to have a job that allowed me to go on disability for very nearly the same amount of income as when I was working, I have this incredible health care system in which the staff really do seem to care, I have a device and materials supplied at no charge to me which keeps my health at a pretty good level, all things considered, and I have friends willing to donate a kidney on my behalf. I also have friends and family who ask about me, who pray for me, and who keep me in their thoughts. When I think about these things, I realize that I am rich beyond my imaginings.

Thank you for your support.

Offerings: Donating a kidney just part of living one’s faith

Carol Penner with her husband Eugene

Carol Penner with her husband Eugene

This is a repost of an Edmonton Journal article by Carol Penner, who donated a kidney as an undesignated donor.

Offerings: Donating a kidney just part of living one’s faith

In 2012 I donated a kidney to a stranger. I never met them, I still don’t know who they are. My donation allowed a chain of donations to happen; four people got life-saving transplants that day.

An important part of my motivation to donate came from my Christian faith. Jesus modelled a life that was filled with giving. I was brought up in a Mennonite congregation, taught that faith in God wasn’t just something you believed, it was something you had to live out in your day-to-day life.

When I told people that I was going to donate a kidney, some of them responded by saying, “God is calling you to do that.” I do think God had a lot to do with it, but I reject the idea of “call” because it sounds like it was a specific voice just for me.

Every year hundreds of people die in Canada waiting for a kidney. I believe God’s voice is always there calling us to be a good Samaritan to the stranger who is dying. It’s just that I found myself in a place where suddenly I could hear God’s voice more clearly. What nudged me in that direction? There were three separate nudges.

The first thing was that my husband was diagnosed with kidney cancer….

Click here to read more.

Carol Penner blogged about her experience as an undesignated or anonymous kidney donor, you can see it here: anundesignateddonor.blogspot.ca She is a pastor at Lendrum Mennonite Brethren Church in Edmonton.

#Listen – Cool People Podcast

My good friend and neighbour, Robert Chazz Chute, is a prolific author who also hosts the Cool People Podcast. Last weekend, he had me over to his place for a chat that has now been posted on his podcast website, http://coolpeoplepodcast.com/. We discuss religion, Good and Evil, God, restorative justice, human behaviour and my life with kidney disease. Have a listen. You can go to the website or search for Cool People Podcast on your podcast app. Check out a couple of his other websites as well: http://chazzwrites.com/, and http://allthatchazz.com/.

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