A Message from a Living Kidney Donor

A few months ago in the post, A Somewhat Oddly Timed Thanksgiving, I mentioned Gerald Neufeld, who donated a kidney on my behalf as part of the Paired Kidney Donation (a.k.a. Living Donor Paired Exchange) program. I had mentioned in that post that Gerald had been a missionary in Japan. These days Gerald continues to be involved in church ministries in two part-time roles, one as pastor of a small Japanese congregation in Surrey, BC, and the other as the music coordinator for Emmanuel Mennonite Church in Abbotsford, BC. On February 12, he shared the following message at Emmanuel:

Faith, Christian Community, and Kidney Donation

Galatians 6:1-10

I’d like to tell you a bit about my experience in donating a kidney a number of months ago. Most of this message will be about my experience. Many people think that it must have been a huge decision for me, but I really felt like it was just a number of small steps of faith. God has blessed me with great health, a supportive family, and a wonderful church community. In deciding to take steps to donate a kidney I felt like I was just responding to God for all the blessings I’ve received…

If you read the article I wrote in the Emmanuel newsletter you would have seen how I decided to donate. Rather than it being one huge step of faith, it really felt like a lot of little things, pieces of a puzzle that came together. As I reflect on this, I realize how much community has been woven through the whole process.

In Paul’s letter to the churches of Galatia he tells them to “Bear one another’s burdens…” Here, he’s likely talking about helping people who are of bearing the burden that results from sin and the consequences of sin, but the burdens that we can help each other with could be anything that takes away from the joy in living our faith – sickness, difficulty finding work, struggles in relationships, uncertainty about the future… I’m not going to get into a lot more detail here but I thought this passage fits well with the role of the faith community in everyday life. A big part of bearing one another’s burdens involves prayer, and as I look back on my experience it’s interesting how the prayers and support of our faith community played such a major role.

At a Vancouver pastor’s meeting, when I first heard a prayer request for a man who was dying because his kidneys were failing, I began to not only pray for him, but I also thought, “Would it work for me to actually donate a kidney?” I began praying to see if God may be leading me this way. Didn’t John the Baptist say “Whoever has two coats must share with anyone who has none”? I figured I have two healthy kidneys, I guess maybe I could share with someone who has none (at least none that are functioning well)! I remember my wife Rie’s initial reaction. “I hope it doesn’t work out for you to do it!” She was quite worried! But then, she also began to pray about it and soon she was strongly supporting me, I think because she sensed that maybe God was leading me in this direction. I did lots of research, and found out that most people who donate a kidney have no problems afterward and can live a normal life. You don’t need any special medication or anything, and the only restriction I have now is that they advise against skydiving. (I’ve never figured out why)…

I read in the Canadian Mennonite magazine about another pastor who donated a kidney, and had no problems, so I decided to take another step and begin the donation process. I had to go through many tests in order to make sure I was healthy enough to donate. If any tests showed a danger of health problems in the future, I would not have been allowed to continue the process. It was at this point that I heard the one to whom I’d possibly donate a kidney, was from the same family that had given me a guitar several months earlier! When my 12-string guitar had been stolen I had put out a prayer request during one of the pastor’s meetings, hoping someone may know about a good deal on buying another guitar, and one pastor suggested he could check with a church member who has a 12-string guitar that was hardly ever used. Right away, I heard that I could have it. Now, this was the same family praying for a kidney! I had already pretty much decided to start the process to donate, but this helped confirm my decision. If they gave me a guitar, I guess I could give them a kidney! Since I wasn’t compatible with the person who needed the kidney, I joined a special program where other incompatible donors and recipients are matched. So, between 2, 3, or 4 incompatible pairs people could be matched so that each person can indirectly donate or receive. It usually takes several months, but before we were matched, the other person actually received a kidney from a deceased donor. I then wondered if God was saying, OK, you don’t have to donate anymore. But by that time, I had heard about a different friend who needed a kidney, so I decided to stay on the list in order to donate for him. Why not? I was all ready to donate! Russ Sawatsky is a friend I’d met in Japan. We’d both been mission workers there, and had met several times. Now, Russ is living with his family in Ontario… After much waiting, we were finally matched and we each had surgery.

To have surgery, I wasn’t too scared because I felt that God had led me to this decision. Of course there was a potential that there may be some complication, but I felt that even if I ended up with some major problem, God would continue to lead me through. I sensed your prayers as well as the prayers of many others in my wider community of family and friends.

Through this whole process, I didn’t let myself think too much about possible things that could go wrong (‘cause I didn’t want to chicken out!) (even though the chances of anything terrible happening were quite slim). I expected everything to go smoothly, but there were a few unexpected things that happened, reminding me that this was a complex process. I guess one thing is that the whole process took longer than I expected. When I first called the number of the “Pre-Assessment Transplant Clinic,” I gave them my email address, and they then sent me all the information I needed to get started in the process. I was thinking in my head that once I called that number, I was committing myself to donate, and would probably have surgery within a few weeks. It could have happened in a couple of months, but in the end, it was over a year later that everything finally worked out. During the process there were many opportunities for me to decide to opt out if I wanted. The staff were very careful to make sure I didn’t feel obligated to continue if I suddenly felt uncomfortable about the whole thing.

After the surgery, I was a bit surprised that it was somewhat more challenging than I had expected. There was no time when I felt all that much pain. At home, though, I took the maximum recommended dosage of painkillers because I wanted to be able to sleep, but it had the opposite effect. My mind went into a panic and I was not able to sleep for over 30 hours! It was a strange feeling, and at times I thought I might die. I prayed quite a bit during that time, committing to God, but physically my mind could not stop racing. After that I didn’t take any more painkillers and I actually don’t think I needed them. I’m glad that the weird effects only lasted about a day, and I’m thankful for all your prayers during my recovery. It was quite meaningful for me to know that I am a part of a larger faith community. It wasn’t just my own prayers that gave me strength, as I’ve mentioned before. You have been participating as well.

In the scripture passage read today, Paul not only encourages the people to bear one another’s burdens, he also says that everyone must carry their own loads. This might seem to be contradictory, but the meaning is different. We are to support and encourage each other along the way, but everyone must also take responsibility for their own actions. Someday, we’ll each have to give an account of how well we lived with what God has given us. The good news is that we are already children of God, part of God’s Kingdom through the sacrifice of Jesus Christ for us on the cross.

Today’s passage from Galatians ends with the encouragement to do what is right, not giving up, and whenever we have the opportunity, to “work for the good of all, especially those of the family of faith.” We all have chances to take a step of faith in some area. It doesn’t have to be organ donation. Maybe God is calling you to commit to give a greater percentage of your money to help others. Or maybe you are being called to give of your time, or something else in a different area. It may be a bit scary, but if you take just a small step of faith, you will see what God can do! And the one step may lead to another and another! I actually did a lot of calculating before deciding to donate a kidney, but I’m trying to trust more and more in God’s leading so that I can take more steps in the direction I feel God leading, even if I haven’t calculated and weighed all the possibilities. Sometimes I end up waiting too long before taking a step of faith, but with the support and encouragement of believers around me I’m learning to trust our Lord, more and more. Our steps of faith may be wobbly like a baby learning to walk. We’ll sometimes fall, but like a loving parent, I believe God is pleased to see us keep trying.

The great thing is that we are not alone in taking our steps. We are part of a faith community. How do we bear one another’s burdens? Here in Canada, we value independence. We teach kids to stand on their own, and take their own responsibility. We make sure we are doing the right thing, and it doesn’t matter so much how others are doing. But, when I lived in Japan I saw a different culture where the emphasis was much more on the community. The needs of the group take priority over individual needs. In Japan people are taught to think about the needs of others before their own. I sometimes notice this cultural difference between my wife and me. She’s criticised my driving because I’ve often failed to let others into my lane. My driving style is to mainly make sure I am following the rules, and others can do what they want, but in Japan people are taught to consider others, even when driving. I think we can learn something from them in this area.

It’s so easy to go through life with blinders on (like a horse). Sometimes horses have blinders on each side of their head so they don’t get distracted and can focus straight ahead. Instead, I’m trying to take more notice of what’s happening around me. It’s not good to just focus on my own situation all the time. Is there some area where you’ve noticed a need? Maybe it’s time to step into the situation in order to offer help in bearing another’s burden, so to speak.

All through the process of my experience, I’ve sensed the work of the wider faith community — after losing my guitar, in my request for prayer at the pastor’s meeting, the request for prayer when someone needed a kidney, the prayers and support from you as well as family and friends in other places, as I underwent surgery, the prayers and support as I took time off work. Community played a role as I learned through the Canadian Mennonite magazine about the other pastor who donated a kidney. And, my connection with Russ Sawatsky through mission work and the wider Mennonite community was another area where community played a role. It’s good to hear that Russ is now doing well, and also the person who directly received my kidney here in BC. I also feel pretty much back to normal.

So, what about each of us, in our lives? Where might God be leading us to take a small step of faith? Jesus said we only need faith the size of a tiny mustard seed. The reason is, God recognizes our little attempts to be faithful, and brings us the rest of the way. Each of us are called to really just take a small step. It usually involves some risk. Maybe God is calling you to take a step. Many people have already signed a donor card. It can easily be done online, and even kids can sign up. A link is provided in the bulletin, but you can also just do a search for “BC Transplant.” Someone who has registered a decision to donate any organs needed, after death, could potentially save the lives of eight different people. Or, some of us may feel a calling to sometime become a live donor. Recently, I was amazed to hear that if you donate a part of your liver, it grows back! If I’d known that, maybe I should have done a liver donation rather than kidney! No… I have no regrets. Maybe someday I’ll consider the liver. But, one thing is becoming more and more clear to me. I think I may never have experienced donating a kidney if it hadn’t been for the supportive community and the encouragement I experienced in the small steps along the way.

Let’s pray.

Almighty God, you have blessed us with so much! Thank-you for all you’ve given us. Thank-you that through your Son, Jesus we have perfect peace and joy. Thank-you for the gift of your church. Each day, you lead us, O Lord. Thank-you that no matter what happens around us we need not fear, because you walk with us. Help us to trust that you always provide us with everything we need to do your will. Increase our generosity, that we may rely more and more on you and less and less on ourselves. Grant us the courage to step out in faith. Help us to notice those areas where you call us to step in and help bear another’s burden. May we recognise the opportunities you give us to take those small steps of faith, through the power of Christ at work within us, Amen.

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Another Milestone

This past week, I completed my first 5-day full-time work week since the summer of 2014. Since the beginning of January I had slowly ramped up from a very gentle two 1/2 days in the first week of 2017 until reaching full-time during the week of Feb 20-24.

All in all, I am pleased with my stamina and ability to work a full-time job. On the other hand, I am going to have to learn how to organize my life a little bit differently. I don’t have a full day to accomplish household tasks anymore. As I write this, it sounds like I’m whining about something that people deal with all the time, but for me, it’s been a while. I’ll just chalk it up to re-adjusting to “normal life.”

This weekend marks another transition point as well. Except for a brief interlude at a retail bank branch, since May 2005 I have been employed at the London, Ontario contact centre for a US discount brokerage, known for most of that time as TD Ameritrade. Effective tomorrow, I will begin to study to become licensed under Canadian investment industry regulations as our local TD Ameritrade centre transitions to TD Direct Investing. Don’t worry, this is not an advertisement inviting you to contact me for investment advice. That’s not our role. I will be called an “Investment Representative,” not an “Investment Advisor.” However, if you happen to have an account with us, maybe some day in the not too distant future (beginning around the end of April) I will have a chance to speak with you over the phone. In the meantime, I guess I’ll see how much the recovery of good health and stamina extends to the intellectual level. Updates to come.

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

It is to weep…1 in 5 willing organ donors have their wishes vetoed

How disappointing it was for me to read this article in the National Post. Even more disappointing for me were all the comments perpetuating myths about organ donation.

Even so, articles like this bring organ donation to the forefront, and encourage people to do two important things: 1. Register as an organ donor; 2. Tell your family that you have registered as an organ donor and that you want their support in the event you suffer life-threatening trauma.

One in five willing organ donors in Ontario have their wishes vetoed by family — and doctors don’t argue

No transplant doctor in Canada has ever gone against a family's wishes despite a signed organ donor card.

No transplant doctor in Canada has ever gone against a family’s wishes despite a signed organ donor card.

Blair Bigham, Special to National Post | November 25, 2016

Toronto — When Heather Talbot saw a police cruiser park outside her home, she braced herself for terrible news. After explaining her 22-year-old son Jonathan was involved in a car crash, police officers rushed Talbot to the intensive care unit at Toronto’s Sunnybrook Hospital, where doctors told her he was brain dead.

“I remember wondering if they would ask about organ donation,” recalls Talbot, who was against the idea.

It wasn’t until a nurse asked about Jonathan’s own wishes that his sister Emily spoke up. The two had gotten their drivers licences together, and she recalled Jonathan signing the organ donor card that came with it.

“I wanted to respect his decision,” says Talbot.

Talbot came to accept her son’s wishes, but often, families feud over whether to respect previously declared wishes around organ donation.

Click here to continue reading.

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.

 

A Follow-Up: “I donated a kidney. I have no regrets.”

A few days ago I reposted an article from the Washington Post written by Michael Poulson, who had regretted donated a kidney at age 18. Here is a “Letter to the Editor” from a living donor, Macey Henderson, who at age 24, donated a kidney to her 36-year-old cousin. To what might we attribute the difference in their attitudes?

I donated a kidney. I have no regrets.

When I was 24, I gave a kidney to my 36-year-old cousin who had been on dialysis for two years, and I have no regrets.

I respect Michael Poulson’s lifesaving kidney donation and his desire to better understand the risks of donating, but aspects of his article were misinformed.

As a research scientist who actively studies risk after living donation, I can report that data show that more than 95 percent of donors are satisfied with their donation decision.

I am not scared about the risk of kidney failure after donating. Mr. Poulson stated that we do not know how many people donate and how many of them develop kidney failure, but that was incorrect: There are national data sources for both of these, and research has been published based on almost 100,000 donors showing that kidney failure risk after donating is a tiny 0.3 percent.

I spend my days thinking not of my remaining kidney but of ways to design a better transplant system, in which live donor care is optimized.

Macey Henderson, Gaithersburg

The writer is a member of the national
transplant network (United Network for
Organ Sharing) Living Donor Committee.
The views expressed are her own.