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Share your spare: One family’s organ donation journey

People are waiting. They’re waiting for their health and lives to be renewed and transformed through the donation of a life-saving organ.

The Canadian Transplant Society, a registered Canadian charity (cantransplant.ca), notes that more than 1,600 Canadians are added to organ wait lists yearly, that 90 percent of Canadians support organ and tissue donation but less than 25 percent have made plans to donate, and that just one donor can benefit more than 75 people and save up to eight lives.
April 19-25, 2015 is National Organ and Tissue Donation Awareness Week. Christian Courier recently interviewed Jeri*, a woman who took part in a kidney transplant exchange. We've asked her to share a little about her family's journey with organ donation.                    

When your first grandchild Aiden was born, your family discovered that he had a medical issue. What was his diagnosis and what were the implications for him?
Aiden was diagnosed with chronic kidney disease secondary to renal dysplasia. His kidneys were underdeveloped and unable to properly filter wastes out of his blood. His kidney disease affected many aspects of his everyday life, including his energy level, appetite and growth. At the age of six months, he started peritoneal dialysis, which was done at home for 10 hours every night while he slept. At that point we knew that Aiden would need a kidney transplant once he was big enough. A kidney transplant would give Aiden the best chance at a more normal life, including better growth and development.
 
How did your family respond when it became evident that he needed a new kidney?
Without any hesitation, family members offered to be tested as potential kidney donors for Aiden. Simple blood type testing showed which family members were potential matches.
 
Did you consult others for spiritual and emotional guidance as you embarked on this unfamiliar journey?
Before we had a chance to process what was happening, our extended family, friends and faith community surrounded us with amazing prayer support. This was such a blessing for me because I was having a very hard time accepting that God would allow this to happen to a little baby. It became a journey to totally trust God to watch over Aiden and all of us through it all.
 
What processes and procedures did you and other family members have to undergo to be eligible to donate a kidney to him?
The initial testing involved completing a lengthy medical form and providing proof of blood type, along with tissue typing blood work. After that only one potential donor was allowed to proceed with the full work-up at a time, which takes about six months. Our son went forward first as he would likely be the best fit to be a direct kidney donor for Aiden. When he completed his testing, I began mine.

My testing included a lot of standard lab work, a complete physical exam, stress test, renal scan, abdominal CT scan, chest x-ray, a kidney biopsy, multiple cross-matching antigen blood work, TB testing, socio-psychological testing and group teaching on kidney donation. And then some tests were repeated throughout the process.
 
What risks were involved?
The risks of donating a kidney are minimal, although there is always a small risk in having any major surgical procedure. With that amount of extensive testing you are told to be prepared to possibly find out something about your health that would have not surfaced otherwise. The rigorous testing ensures that the donor is healthy physically, psychologically and even spiritually, and that his or her life would not be compromised by donating a kidney. A physically healthy person can live quite well with one kidney – many people are born with one kidney and aren’t aware of it. Going from two kidneys to one reduces kidney function to 70-85 percent, but the body can remain healthy even at a much lower level of renal function.
 
What kind of testing did Aiden have to undergo and for what specific purposes?
Aiden had to complete numerous tests to identify any additional health risks and ensure that he was ready to undergo the transplant operation. These included several abdominal ultrasounds, chest and bone x-rays, echo cardiograms and ECGs to check his heart health, EEGs to check his brain health, and appointments with urology, pre-anesthesia, the transplant social worker, dietitian and dentist. Aiden also had to be up-to-date on his vaccinations and even had to get some early as there are certain vaccines that he couldn’t have after his transplant.

Did any of you run into obstacles as you underwent testing?
The greatest obstacle was that just as our son was completing his testing, Aiden developed some antibodies which would cause his body to reject a kidney donation from our son, my husband, our daughter (Aiden’s mom) and me.
 
The medical professionals suggested that you participate in the Living Donor Paired Exchange (LDPE). Tell us about that program.
LDPE is an exchange program where donors who are incompatible with their loved ones are instead matched with people in the same situation – a kind of organized kidney swap. This program was established nationwide in Canada in 2009. The children’s hospital where Aiden had his transplant joined the program in 2011. It offered us hope. Both my son and I were approved to be kidney donors in this program once our testing was completed.

The tricky part about this option is that all the surgeries have to take place within a 24-hour period. If one person in our group was unable to go ahead with the surgery, the whole chain would collapse. And sure enough, that’s exactly what happened . . . twice!

What happened on the day of the surgery?
Since I was matched to donate in British Columbia, my husband and I flew there, from Ontario, a few days early for pre-surgery appointments. On the surgery day, my left kidney was removed laparoscopically under general anaesthetic – three small abdominal incisions for the surgical instruments and one 8-cm incision (similar to a C-section) where the kidney was removed. My recipient was waiting in the next surgery suite ready to receive my harvested kidney.
 
What was your recovery period like?
I was discharged from the hospital after 48 hours, followed by several weeks of recovery. I will continue to be monitored annually. It was my first real experience of letting others take care of me for a length of time but many visitors, good books to read and puzzling made the time go quickly. The body adjusts by enlarging the remaining kidney to pick up the extra work and I was up to 85 percent renal function after 10 weeks.
 
Will you ever learn who else participated in the exchange that radically altered Aiden’s life?
Not likely. The LDPE program is facilitated by Canada Blood Services. Donors and their recipients aren’t allowed to know of each other. But we were told that all the donors and recipients in our group were doing well in the early weeks post-surgery. If mutually agreed upon, donors and recipients are allowed to send a non-identifying note to each other via the transplant program’s social worker. I think about my recipient often and wonder how he or she is doing, but ultimately my “end” recipient is my grandson. Aiden’s surgery was done the day before mine, when my husband and I were already in British Columbia. It was a very emotional day for us, especially when our daughter texted us that the donor kidney for Aiden had arrived at the hospital. It made it so real to know that we were intimately connected to the other families who were on the same journey as we were.
 
Was the transplant a success for Aiden? How has his life changed?
So far, the transplant has been successful for Aiden. He no longer requires dialysis and he’s so much more energetic and full of life. It is amazing to see him enjoy improved overall health. There have been some hiccups (we were told to expect that) and lots of appointments and testing to ensure the kidney is functioning as it should.

A kidney transplant isn’t a cure. However, it’s the best possible treatment for kidney failure. The first year post-transplant is the most critical and we’re only about halfway into it. On average, a transplanted kidney from a living donor lasts for about 20 years (less from a deceased donor), after which dialysis or another transplant will be needed. Anyone who has had an organ transplant will also need to be on anti-rejection medications for the rest of their life. But anti-rejection drugs are improving all the time so transplanted organs are lasting longer. It’s even conceivable that artificial kidneys will become the norm in as little as 10 years from now. With so many people on the waiting list for a kidney transplant, this would be an amazing breakthrough.

 Did you experience God’s presence in the process?
I’m convinced that it was only by God’s presence and grace that I was kept healthy to be able to donate a kidney, and that I never once felt anxious about doing it – well, other than the usual nervousness about having major surgery for the first time in my life. I was somewhat worried that the chain would break a third time and that I could be the cause of it. I was continually praying for God’s peace and for the faith to constantly put my trust in him through it all.
 
What have you learned through this experience?
I’ve become convinced that no one goes through life without some tough stuff. I’ve become so much more aware of how hard life can be for entire families when one isn’t well and how it’s important to let others walk alongside you in the journey. I’ve stood amazed at the excellent care and compassion of the medical professionals at the children’s hospital and the transplant centre, as well as the necessary work of research needed to help treat and seek cures for so many diseases. I’ve also learned about the incredible gift of Ronald McDonald House, where entire families of seriously ill children can stay together at very little cost to them. But mostly I’ve learned to continually trust that God has us in his hands.

Do you believe that Christians have a responsibility to be live organ donors and to agree to donate their organs after death, if possible?
Being a living organ donor is a very personal decision, and while it can be a very rewarding experience to give another person this incredible gift of life, it comes with risks and sacrifices and is a decision that should only be made after getting all the facts and discussing it with your family. Through our experience with organ transplant, we have gained a better appreciation of how important organ and blood donation are and how positive of an impact they can have on a person’s life. I would strongly encourage people to prayerfully consider the opportunity to be a blood and organ donor, if able, and to talk to their loved ones about it. They can sign up at beadonor.ca.

Jesus said that there is no greater love than to lay down our life for our friends (John 15:13) and the apostle Paul said that we must value others above ourselves (Phil. 2:3-4). I think these passages speak about a Christian’s responsibility to seek the welfare of others on a lot of different levels. For me, being a living donor fits with this. The context of both of these passages shows Christ’s great love for us and his total sacrifice as he gave his very life for us and our salvation.
 
Do you have any plans to take on a more public role to increase awareness about the need for organ and tissue donation?
We’re still too early in the journey, so I’m not sure how that will unfold for me. As a family, we want to encourage more people to consider being blood and/or organ donors. I proudly wear the “Be a donor” green ribbon and have one pinned on my purse too. It’s a good conversation starter.
 
If you had the opportunity to make a public announcement about organ donation, what would you say?
Please share your spare! There’s an amazing sense of satisfaction as a living donor in knowing that your blood or organ donation is giving someone the gift of life. If you would be willing to receive someone else’s blood or organ, shouldn’t you be willing to donate yours? There’s such a great need for donors. Please don’t wait until you die because very few deaths occur in circumstances where the person is on life support and the organs and/or tissues can be harvested to save lives.

(*For reasons of confidentiality, last names have been withheld.)

Did you know?
•  You can donate certain organs while you're still alive: a kidney, part of the liver, and a lobe of the lung.
•  As our population ages, the need for organ and tissue donations will increase.
•  One in ten Canadians has kidney disease and 80 percent of Canadians waiting for an organ transplant need a kidney.
•  You can donate your car (or truck or boat) to the Kidney Foundation of Canada and receive a FREE tow and tax receipt while helping the environment and people living with kidney disease in Canada. Donate online at kidney.ca.
•  The Trillium Gift of Life Network reimburses organ donors of Ontario recipients for a majority of their expenses through PRELOD (Program for Reimbursing Expenses of Living Organ Donors); other provinces have a similar program.
•  There are 14 Ronald McDonald Houses across Canada providing support to families of sick children.

4,500 – Number of Canadians who are waiting for organ transplants today

2,124 – Number of organs transplanted in 2012 in Canada

256 – Number of Canadians on wait lists who died before receiving transplants in 2012

70 – Percentage of Canadians living outside a city with a children’s hospital

8 – Number of lives that can be saved from 1 organ donor

Some helpful websites
•  Canadian Transplant Society – pledge to be an organ donor (cantransplant.ca)
•  Be a Donor – register to become a donor (beadonor.ca)
•  Canadian Blood Services – It’s in you to give! (blood.ca)
•  Kidney Foundation of Canada (kidney.ca)
•  Trillium Gift of Life Network (trillium.on.ca)
•  Children’s Miracle Network (giveamiracle.childrensmiraclenetwork.ca/)
•  Ronald McDonald House Canada (rmhccanada.ca/)

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