Living
KIDNEY Spring 2019 Volume 12 • Number 1
www.kidney.ca/ontario
A PUBLICATION OF THE ONTARIO BRANCH
#SixDegreeChallenge
contents
SPRING 2019
ADVOCACY/FUNDRAISING 3 Start the Conversation 11 Green Shirt Day 20 #SixDegreeChallenge 21 Community Highlights 23 Calendar of Events PERSONAL STORY 4 An Appetite for Life 16 The Ups and Downs of Transplants 17 A Kidney for Nelson
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ORGAN DONATION/TRANSPLANTATION 8 Transplant, Rejection, Hope 9 Good Health Recommendations Post Transplant 10 The Perfect Match 13 Living Donation—10 Years Later 15 Delayed Graft Function 18 A Transplant Recipient’s Gratitude 19 Bone Disease After Kidney Transplantation SERVICES AND SUPPORT 6 A Road Map to Recovery
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Cover: Bryanne participated in the #SixDegreeChallenge while on dialysis.
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©2019 Kidney Living, the contents of which is subject to copyright, is published twice a year. Reproduction in whole or in part, in written, electronic or any other format, without prior written permission, is strictly prohibited. For more information, contact Trish Reynolds, Editor at trish.reynolds@kidney.ca or 1-800-387-4474 Ext. 4981.
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EDITORIAL
Start the Conversation April marks Be A Donor Month in Canada
by Trish Reynolds
The Kidney Foundation of Canada, Ontario Branch 2018 - 2019 Board of Directors Craig Kerr, President Richard Bernreiter Chris Costanza Alan Hui Moe Jiwan Sandy Kauenhofen Craig Lindsay Michael Mastrionardi Dr. Norm Muirhead Greg Robbins, Past President Mary-Pat Shaw Sonya Solman Susan Tkachuk Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003
www.kidney.ca/ontario
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here’s no question that organ donation saves lives and gives new hope to thousands of Canadians who desperately need an organ. Over 4,300 Canadians are on the waiting list for a transplant; 78 percent of those are waiting for a new kidney. This month, we saw a nation stand together to celebrate Green Shirt Day on April 7 and honour Humboldt Bronco player, Logan Boulet for his gift of life that literally transformed a nation by inspiring over 100,000 Canadians to register their wishes. This issue of Kidney Living shares the stories and experiences of five individuals who have received a gift of life—a kidney transplant. There are similarities in each story: a sense of profound gratitude for this amazing gift; a desire to live each day to the fullest, making the most of this new chapter. But each story also shares some of the very real challenges faced during the transplant journey. More than 28,000 Canadians rely on dialysis to treat their kidney failure. Some, like Bryanne (cover photo), travel to the hospital three times a week for treatment. Others have treatment at home. We know that transplantation is considered the best available treatment option and provides the best survival rates for those living with end-stage kidney disease. We also know the sad reality is that the wait is long. Unfortunately, transplant is not a treatment option for everyone. At this time in Ontario, approximately 10 percent of those on dialysis are on the transplant wait list. Kidney Living has dedicated content in past editions to living well on dialysis. To review our other content, visit kidney.ca/on/kidneyliving. We have gathered a variety of stories to prepare and inform you. Check out the Emotional Readiness for a Transplant article on page 6. Thinking about approaching someone to be a living donor? We’ve assembled some tips to help you as you seek to find your match. Best of all, we’ve assembled some tips from our online community about things only someone with a kidney transplant could know. Amazing progress has been made in the field of transplantation in the last 50 years. It wasn’t that long ago that transplantation was in its infancy, and still considered experimental. Today, improved anti-rejection drugs help make it possible to live with a donor organ for many years. Donna’s ‘Kidney Bean” provided her with over 45 years of good health (page 18)! We invite you to use this issue of Kidney Living to start a conversation. Talk to your friends, family and colleagues about how you are connected to kidney disease. Through open dialogue and education, we can break down some of the barriers and improve the lives of Canadians living with kidney disease. Spring 2019 / Kidney Living /
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PERSONAL STORY
An Appetite for Life Donor kidney ‘meant everything’ to Natasha
by Heidi Westfield
p Lifelong friends, Navila
Uddin (right) and Miranda Priestman (left) at the Canadian Transplant games with Natasha
t Natasha won gold in the
100m dash at the Transplant Games in 2016.
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atasha is now on home hemodialysis, hoping soon to be healthy enough to join the list for a donor kidney. The 30-year-old Toronto resident lost her transplant just over two years ago—a difficult setback. The donor kidney she received as a teenager had changed her life. It gave her the opportunity to go back to school and join student clubs. She even had the energy to run in track-and-field races. “Running felt like flying because I had been wheelchair-bound. It meant the world to say hey, I have feet and I can use them!” she says. “I was given a second chance at life to follow my passions. It meant everything to me.” Doctors first noticed Natasha’s poor renal function when she was in Grade 5. At the time, they weren’t sure what was leading to the kidney problems. She was prescribed medications and released from hospital. Shortly after returning home, her condition worsened and she had a seizure. Her mother called an ambulance. “It happened all of a sudden,” Natasha recalls. “Doctors didn’t know what was going on. I ended up having seizures for 36 hours straight. I was hospitalized and eventually slipped into a 19-day coma.” It was a scary time for Natasha and her family. She eventually regained consciousness, but by then had lost the ability to walk and speak. In the next months Natasha worked hard to regain those abilities. When she was healthy enough, doctors focused on her failing kidneys. She was put on peritoneal dialysis first, then switched to hemodialysis. Over that time, she was weak and had no appetite. Eating and drinking almost anything at all was a struggle. Natasha learned a donor kidney was available on the night of November 5, 2003. Her first reaction was fear. She had been chronically sick for three years, and wasn’t sure a new kidwww.kidney.ca/ontario
PERSONAL STORY
ney would help. A nephrology nurse eased her concerns by assuring her of the benefits of a transplant. Almost immediately after the surgery, Natasha knew it was the right decision. “The first thing I said to my mom when I woke up after having transplant surgery was ‘I am hungry.’ I had not said that for three years,” she adds. “I really did feel right away a huge difference.” After the transplant, Natasha joined her friends at East York Collegiate in Toronto. There, she finished high
school with top marks and was offered scholarships at a number of universities. She chose to study at McMaster in Hamilton, pursuing a double degree in Economics and Multimedia. While there, she joined the Team Transplant dragon boat team to help raise awareness of organ donation. She also developed a multimedia project in her final year, sharing the stories of a variety of transplant recipients. Over the years, Natasha continued to stay active and dragon boat competitively. She took part in the
Canadian Transplant Olympics in 2016, winning a gold medal in the 100m dash. Now, as she waits for her health to improve, it stands out as an important milestone. A reminder of what she has achieved so far, and what she can accomplish in the future if given the chance.
10 Things
Only Someone Living with A Kidney Transplant Understands
When you do not look sick, it can be difficult to explain your chronic kidney disease to others. Living with a transplant can also be hard to explain. We asked you to help explain what it is like living with a kidney transplant. Thank you to our online community for sharing your insights. Join the conversation:
@kidneyontario
Getting frustrated when people say “You had a kidney transplant? You don’t look sick!” Our beautiful scars (and explaining the scar is NOT an extra belly button…) Waking up three times a night to pee and being thankful. You are the only one happy to have to stop on a road trip to find a restroom. The many medications and doctor visits. The fear of phone calls: always feeling anxious of a possible kidney rejection. Prednisone mood swings. Hair loss and weight gain. No more gardening without gloves. You live like a hermit during flu season. Being a “sick” healthy person. The “healthies” will never get it! The feeling of genuine gratitude for the person who gave the gift of life.
www.kidney.ca/ontario
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SERVICES AND SUPPORT
A Road Map to Recovery Navigating the emotional impact before, during and after kidney transplantation
Suela Cela, MSW, RSW, Kidney Transplant Program, St. Michael’s Hospital, Toronto
Kidney transplant is a long journey, associated with a variety of challenging and difficult emotions. Receiving a kidney transplant is a life -changing event. It is normal to feel stressed out and anxious about big life changes. Emotions such as hope, fear and uncertainty are common among individuals pursuing a kidney transplant.
Photos.com
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ere are some of the most common emotional challenges reported by individuals at different stages of their journey of kidney transplant:
Transplant evaluation is a long and stressful journey that might take months and sometimes even years. It requires that people attend multiple medical appointments at the transplant centre in addition to their already cumbersome dialysis routine. This proves to be very challenging for many individuals in the presence of their vulnerable health and is associated with a lot of frustration. There is much hope and fear associated with waiting to hear if someone gets approved for a kidney transplant and consequently put on the waiting list to receive one. Waiting for a kidney transplant: unless there is a living donor, every individual approved for a kidney transplant has no choice but to wait for a kidney transplant. The wait could range from two to eight years or more. Most of the stress and fears are related to wondering if they will ever get a call, to the unpredictability of the call, to the surgery itself, the healing process and the transplant outcome. As they spend more time on the waitlist, in the event of a call they need to be always ready and alert to get to transplant centre and undergo surgery. In most cases, this wait triggers a lot more anxiety and uncertainty. www.kidney.ca/ontario
SERVICES AND SUPPORT
There is an “emotional roller coaster” that transplant recipients usually report experiencing during the first few months as they recover from the transplant surgery. Their mind and body is trying to adjust to multiple changes including pain from the surgical incision, getting used to a new medication regimen, learning about signs and symptoms of infections/rejection, multiple trips to the transplant centre, and at times irritability as a side effect of the steroids that are part of their transplant medications. There is a lot of stress and anxiety associated with delayed graft functioning and/or with their kidney transplant functioning. At times, even with a good transplant outcome, it takes a while for some recipients to feel better
physically, which might cause them to experience feelings of sadness and disappointment. Guilt is another feeling that some recipients experience after a kidney transplant. In addition to being grateful for someone having donated their organs and having a second chance in life, they cannot help but feel guilty because they benefited from someone else’s loss. In the event of a living donor kidney transplant, someone close to them underwent a major and painful surgery. Coming to terms with accepting a kidney from a loved one is a long emotional journey for many recipients, as they feel guilty and worry about the long-term consequences of the donor’s health.
Here is what you can do to better prepare emotionally while you wait for a kidney transplant: Take good care of your physical health; i.e., take your medications, follow your dialysis routine and follow a healthy diet as prescribed by your healthcare team. Take good care of your mental health and reach out for help should you struggle with depression and/or anxiety. Keep active while being aware of your abilities; i.e., volunteer if you can, to keep busy and stay connected. Try and stay positive while accepting uncertainty. It might be helpful to revisit your expectations about kidney transplant.
Adjusting to life with a kidney transplant: After a kidney transplant, some individuals suffer from a constant fear of uncertainty about the future of their kidney transplant. How long will this transplant last? What about complications? They have a hard time returning to normal activities and worry about their new role in life. They need to navigate new roles within their family and family dynamics might change. Most of them worry about their finances and losing disability benefits while others might struggle in getting back into the work force. There is the constant need to reinvent themselves which can be stressful for many transplant recipients. It is important to be aware and talk about these emotional challenges as they might affect someone’s ability to engage in their transplant journey and/or take good care of their kidney transplant. The best anyone going through this journey can do is to focus on what they can control now, take care of their emotions as they experience them, and review their transplant goals while being realistic so as to prevent disappointments. Most importantly, they need to remind themselves of what they are doing well, that they are doing the best they can while on dialysis. Taking care of their emotions is yet another way of preparing them for the challenging journey of transplantation.
Let your family and friends know about your feelings and emotions. Build a support team to help you emotionally throughout the transplant journey. Connect with Peer Support program/groups; everyone waiting for a kidney transplant faces similar difficult emotions. Reach out to your transplant team to learn more about transplant and its journey. Learn how to manage stress now; reach out to your Dialysis or Transplant Social Worker to learn ways of coping with these difficult emotions. This will help you cope better with difficult emotions after a kidney transplant.
www.kidney.ca/ontario
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ORGAN DONATION
Transplant, Rejection, Hope Strong support from family and medical team makes the difference
by Natalie Richard
q Fred with his grandkids. During his
“transplant roller coaster ride,” Fred has remained hopeful that both his kidney transplant and his spirit will stay strong.
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anadians often call organ transplantation a “new lease on life.” For those living with kidney disease, however, transplant is only a treatment and not the end of their kidney journey. For Fred, receiving the gift of life was an entirely unexpected new chapter in his life. For more than 20 years, Fred knew his creatinine levels were above normal. His family doctor sent him to Dr. Michael Davidman, a nephrologist at the Jewish General Hospital in Montreal, where he monitored Fred’s kidney function for several years. In June, 2016 his creatinine levels increased above 300, and reality set in: Fred would require dialysis or a transplant to replace his kidney function. With the support of his family, Fred prepared to go on the transplant waiting list. What they did not expect was the number of tests—and surprises—including a dormant version of tuberculosis, along the way. In January of 2018, Fred was admitted onto the transplant list. “I was told you can’t be more than four hours away from Montreal at any time because you have to be there or you’ll lose it. [My kidneys] were moving downwards and March was just an awful month. In the pre-op for the installation of a PD catheter, the surgeon found a hernia that needed repair to avoid leakage from dialysis. This turned out to be a blessing, as dialysis was postponed for a month to allow the hernia repair to properly heal.” An early April appointment was scheduled to learn how to do dialysis. Incredibly, on April 3, the hospital called to say that they thought they found a match. Fred received a new kidney the following day. With a lowered immune system thanks to his new transplant medications, Fred began working from home. Things seemed to be going well until June, when a routine blood test revealed an abnormal lowering of blood cells. With no immune system and having to take a succession of injections to correct the problem, Fred could not go outside to areas where his immune system might be susceptible. For Fred’s son, David, this meant not having his father around on his wedding day. “It was dangerous, and they said I couldn’t go anywhere or do anything, and it was bad because David was getting married and I couldn’t go.” www.kidney.ca/ontario
ORGAN DONATION
Summer for Fred meant navigating the ups and downs of his transplant with his compassionate nephrologist, Dr. Shaifali Sandal, by his side. One day, his creatinine count with his new kidney was back in the 120s and a biopsy detected rejection. Dr. Sandal prescribed steroid treatment in the hospital. The treatment worked, and Fred was discharged. However, a blood test a few days later showed that it failed to hold. “That was the worst day of my life. I thought I was losing the kidney.” Dr. Sandal assured Fred that these things happen, especially in the first year following the transplant. She assured him that there were solutions for this and that she and her colleagues would find them. Dr. Sandal was right. The follow-up biopsy showed that the rejection had departed, and his creatinine levels were back at acceptable levels. Fred began both feeling and looking great.
On the “transplant roller coaster ride,” Fred has stayed hopeful that both his transplant and his spirit will stay strong. With his wife, son, daughters, colleagues, clients and empathetic nephrologist by his side, Fred continues through this new part of his journey with kidney disease. Kidney transplant is one option for those living with kidney failure, but it is not a cure. If you, like Fred, are facing the fear of rejection, remember that you are not alone. Reach out and speak with someone today.
[the doctor] assured him that there were solutions for this and that she and her colleagues would find them.
The Kidney Foundation’s Kidney Connect Peer Support program is here for you. Speak with someone who has been there too, by phone, in-person or online. Get connected today at: www.kidney.ca/ontario/peer-support or call 1.866.390.7337.
Good Health Recommendations Post Transplant The wait is over. You’ve spent months, or possibly years to get to this moment: a new kidney is now a reality. The kidney transplant is a new chapter in your kidney health journey.
StoryBlocks.com
www.kidney.ca/ontario
Wear a Medical ID bracelet that identifies you as the recipient of a kidney transplant. Avoid prolonged exposure to the sun. Anti-rejection medications can make your skin more susceptible to sun damage and skin cancer. If you do spend time in the sun, apply a good sunscreen first, preferably one labelled SPF 45 or more (and reapply as needed). Wear a hat and clothing which blocks the sun. Wash your hands regularly to help avoid infections. Prepare, cook, serve and store food in a safe manner. Also, since you are immunosuppressed (your immune system is weakened due to the anti-rejection medications you are taking), do not eat raw meat, fish, poultry, eggs and raw cheese since these foods could contain bacteria that could make you ill. Report fevers, sore throat, cold, flu or unusual bleeding to your doctor. Avoid over-the-counter medications or herbal remedies. Many contain substances which can harm your new kidney or which might interfere with other medications you are taking. Take anti-rejection medications exactly as prescribed. Inform your transplant team or pharmacist of any medications prescribed by other doctors. Attend all your doctors’ appointments and have your lab work done regularly. Stay active, eat a healthy diet and maintain a healthy weight. Spring 2019 / Kidney Living /
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ORGAN DONATION
The Perfect Match In search of a match—a living donor—that is
Waiting is never easy. For those waiting for a deceased donor kidney, the wait is often measured in years, not months. On average, Canadians can expect to wait about four years for a deceaseddonor kidney.
Talking about the gift of a kidney isn’t as simple as asking someone to borrow a cup of sugar
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StoryBlocks.com
iving donation represents a wonderful option for many individuals in need of a kidney transplant. Over 25 percent of all kidney transplants are made possible by living donors. In fact, the success rate for a transplant from a living donor is generally better than for those who receive a deceased-donor kidney. If you feel that a kidney transplant is the best treatment option for you, how do you start a conversation about living kidney donation? Recipients feel awkward and wary to approach family and friends about being a living organ donor for them. Talking about the gift of a kidney isn’t as simple as asking someone to borrow a cup of sugar; it’s asking someone to go through surgery that they don’t personally need and that is for the benefit of someone else. In recent years, there have been many examples of the extraordinary lengths people have used to find a donor. There have been social media campaigns, stories in traditional media, billboards, bus shelters and even ads on transport trucks. It’s evident that people waiting, and their loved ones, are eager to do whatever it takes to find a donor kidney. We have assembled some tips to help you start the conversation about living donation. Send a general email to family and friends. Those who are curious to know more details will often contact you for more information:
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www.kidney.ca/ontario
ORGAN DONATION
Hi Everyone: Just a note to update you all on what’s been happening with my health. I saw Dr. Emdee today and she told me I would likely be starting dialysis within the next month. She also explained that I am eligible for a transplant from either a living donor or a deceased donor. In spite of the daunting process of dialysis, it’s comforting to have the possibility of transplant ahead. In any event, I am prepared for whatever is down the road for me. Thanks for all your caring and I know I can count on all of you for support as I follow my path. The content here is general and doesn’t put the pressure on anyone specifically to step up to the plate. Your workplace If you have a supportive supervisor or
colleague, with your permission, have them write an email on your behalf to your co-workers, citing your situation. It should be formatted as an FYI as opposed to any direct solicitation for a donor. For example: Hi All: As you are aware, Mary Smith has been off for some time now. She has given me permission to let you all know how she is doing. Many of you may not know that Mary has polycystic kidney disease, an illness that eventually results in kidney failure. This has recently happened to Mary and she has started dialysis. As this disease runs in families, many of Mary’s relatives find themselves in a similar situation. Nonetheless, she is hopeful about eventually finding a living kidney donor for a transplant. Currently, she is on the lengthy waiting list for a kidney from a deceased donor.
I am sure we all wish Mary our best for better health in her future. It is surprising how many times donors come forward to donate to a work colleague, sometimes even when there was no particularly close emotional relationship. Donors come forward for many reasons: perhaps a loved one died waiting for a transplant; maybe they identify with you in some way that motivates them to consider donation. Sometimes, people simply come forward because they want to help, are appreciative of their good health, or feel they want to do something meaningful for someone else. Your faith community Your place of worship is also a great opportunity to spread the word of your need for a kidney. All faiths share the common belief of helping others Continued u
Green Shirt Day
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he Kidney Foundation was proud to support the Green Shirt Day Initiative on April 7, 2019. Green Shirt Day began as a partnership of the Canadian Transplant Association, Canadian Blood Services and Global News. The day honours the legacy of Logan Boulet, a 21-year-old Humboldt Broncos hockey player who died following a tragic bus crash that took the lives of 16 people on April 6, 2018. Logan’s parents, Bernadine (Bernie) and Toby Boulet, honoured Logan’s wish to be a donor, saving the lives of six Canadians. Logan’s gift of life inspired more than 100,000 Canadians to register their intent to donate their organs. www.kidney.ca/ontario
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ORGAN DONATION
in need or in illness. Speak with your faith adviser to see if it is possible for him or her to prepare a sermon that addresses faith and transplant and how one of their members needs this life-changing gift. Social media Social media sites offer a great opportunity to get the word out. Sites such as Facebook, Instagram and YouTube have literally exploded over the last number of years, connecting the world in their unique ways. Share your story and explain your medical situation, how it’s impaired your life, and how you hope things will change for you after a kidney transplant. If you choose to share online, you should be aware that you are offering intimate details of your health and family. Once it’s posted, you have little control over how these details are shared or could be used in the future. Take time to control your social media privacy settings so that you can regulate who sees this information. Do you want to share this message with your “friends” or a broader audience? Ask your transplant centre about how potential donors should contact them. If someone is truly interested in learning more about living donation, take the discussion offline. Ask someone you feel comfortable with to create and manage a Facebook page for you with an attentiongetting header such as: “John Smith is looking for his kidney. Do you have it?” Who knows? Maybe that long-lost high school chemistry lab partner may throw their hat into the ring (or their kidney into a dish)! Seeking a living kidney donor can be a roller coaster ride. Be aware that some people may come forward and later decide not to proceed with testing or the transplant. This can be a challenge for both you and your loved ones. Be positive, but also set realistic expectations. With the evolution of innovative kidney transplant programs and
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creative ways for recipients to source potential donors, the possibility of getting a functional kidney in a timely manner is no longer hopeless. Here’s
to your good health and to the health of living kidney donors everywhere! With files from Brigitte Talevski, MSW, RSW, Transplant Program, University Health Network
BigStock.com
Living Donation 101 The living donor option has snowballed into several specialized programs. Direct Donation: A living donor gives their kidney to an individual they personally know, whether they are related by blood or not. There is compatible blood pairing in these cases. However, if you are not a corresponding blood match and you’re still committed to giving your kidney to a particular recipient, we have now leaped over this hurdle. If medically suitable, a recipient can go through a process of “desensitization,” an intravenous treatment of several months’ duration that will enable them to accept a kidney from a non-matching blood group. Paired Exchange: Two sets of donor/recipient combinations are not blood matches but each donor is a match for the other pairing’s recipient. For example, Bob is an A blood group and wants to give his kidney to his wife Carol who is a B blood group. The transplant program notes that donor Ted, who is a B blood group, wants to give to his wife Alice who is an A. Each of these donors does not match their original intended recipient but matches the other’s recipient. Kidney List Exchange: A donor is not a blood match for their intended recipient and there is no suitable pairing for a kidney paired exchange. The donor then gives a kidney to the recipient at the top of the list for their matching blood group. For example, Bob is an A blood group but can’t give to Carol who’s an O. Bob then gives his A kidney to Ted, also an A, who is at the top of the deceased donor waiting list. Because of Bob’s donation, an A person gets removed from the list and everyone else moves up on the list. In return, Carol gets to move to the top of the O list because she has already supplied a kidney to the system. Carol will get the next available deceased donor O kidney, barring any medical emergency where survival is threatened. Non-Directed Donors (NDD): This group is also known as “Anonymous Kidney Donors.” These are individuals who, primarily because of altruism, come forward to donate a kidney to a transplant program that is to be used in whatever way will best benefit their recipient group.
www.kidney.ca/ontario
ORGAN DONATION
Living Donation—10 Years Later Kidney donation when you don’t even know the recipient
by Natalie Richards
“Do unto others” is a saying we have all heard, but few take it to heart quite like Ottawa native, Bob. q Ready for surgery. Bob gives a thumbs up with
Dr. Gourlay who performed the surgery and has done more than 1,000 organ donation surgeries.
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lways an active member of his community, Bob often donates his time and energy to local causes such as donating blood, coordinating his local Terry Fox run and going door to door in his community each spring for The Kidney Foundation’s March Drive fundraiser. “Maybe it was meant to happen,” Bob recalls. “This pamphlet was sitting in front of me, asking ‘Can I be a living donor?’ and that was where my interest in being a donor began. I think it was meant to happen.” Curious at the prospect, Bob dove into researching the pros and cons of becoming a living organ donor in Canada. He spoke with other living donors, and with his family about the prospect of giving one of his kidneys to a fellow Canadian in need. “When I told my family, I don’t think they were all that surprised. When I showed them the research I had done and how successful living kidney donation is for both the donor and the recipient, they were really on board with me.” The process of becoming a living donor is a long one, including many months of medical testing. For Bob, it took about eight months, with a few surprises along the way. What surprised Bob the most was seeing how much his team emphasized his health. The focus was on making sure Bob was healthy and that any potential surgery would go well for him. “Your health is their number one priority and I appreciated how thoroughly they took that to heart.” The next spring, Bob received the call from the kidney paired exchanged program that he would be travelling to Vancouver to donate one of his kidneys to a stranger. His kidney donation created a chain of three other kidney donor and recipient operations. Now, nearly a decade later, Bob shares his story of being an anonymous kidney donor to emphasize the cost of giving: Spring 2019 / Kidney Living / 13
ORGAN DONATION
“The cost was a kidney. Sure, there was the cost of time to do the testing leading up to it, but otherwise the costs—the financial costs—were minimal. At the time, a living donor expense program covered my travel, transportation and hotel. All it really cost me was a kidney and if you didn’t know I was a donor, you’d never know. I’m healthy and happy to know I helped another Canadian this way.” As of February, of this year, there are over 1,239 people just in Ontario waiting for a kidney or kidney/pancreas transplant. Living organ donors like Bob directly impact the wait time for those who are on the transplant list. In fact, of the 696 kidney and kidney/pancreas transplants performed in Ontario last year, 31 percent were from living donors. If you are interested in becoming a living kidney donor, you can find more information online through Canadian Blood Services or by speaking to your medical team. Today, a decade after donating one of his kidneys, Bob is spearheading a peer support group for other living kidney donors in Ottawa. He is also a proud member of The Kidney Foundation’s Peer Support Program and encourages other Canadians touched by kidney health issues to reach out if they need someone to talk to. April is Be A Donor month. Talk to your family about organ donation and the options you have to make a difference in the lives of your fellow Canadians.
Ontario Branch
1599 Hurontario St., Ste. 201 Mississauga, ON L5G 4S1 1-800-387-4474 • 905-278-3003 ontario@kidney.ca
African-Caribbean Kidney Association 1-800-387-4474 acka@kidney.on.ca Brampton
1-800-387-4474
Brant County
1-800-387-4474
Central Ontario
1-800-387-4474/905-278-3003 daniela.piotrowski@kidney.ca
Chinese Renal Association 1-800-387-4474 ext. 4977 shukyu.fong@kidney.ca Durham Region 1-800-387-4474 Eastern Ontario
Program for Reimbursing Expenses for Living Organ Donors (PRELOD) Becoming a living kidney donor is a wonderful gift, but it does require time and commitment. Potential donors go through many tests and appointments as part of the evaluation process. If the outcome is positive, and the donor is cleared to proceed with the transplant, they are usually advised to stay off work for a period of four to six weeks post-op for healing. In Ontario, living donors may apply for financial support through the Ministry of Health and Long Term Care to reduce the financial stress that comes with being a living donor. The program, called PRELOD (Program for Reimbursing Expenses for Living Organ Donors) provides support to cover expenses for people who donate an organ to an Ontario resident who is covered by OHIP. How much you are reimbursed depends on how far you live from the transplant hospital, and whether you have other sources of funding such as employment insurance, Northern Health Travel Grant, or disability insurance. To learn more about PRELOD visit the Trillium Gift of Life Network website at www.giftoflife.on.ca or speak with your transplant social worker or the transplant coordinator.
613-724-9953/1-800-724-9953 melissa.forster@kidney.ca
Hamilton & District
1-800-387-4474 ext. 4969 julie.bertoia@kidney.ca
Kingston
613-542-2121 melissa.forster@kidney.ca
London & District
1-800-387-4474 ext.4860 rizwana.ramzanali@kidney.ca
Niagara & District
1-800-387-4474 ext. 4969 julie.bertoia@kidney.ca
North Bay
1-800-387-4474
Northern Superior 807-624-2680 marion.harms@kidney.ca Sarnia-Lambton 519-344-3462 elaine.hayter@kidney.ca Sault Ste. Marie 705-949-0400 tannis.mcmillan@kidney.ca Timmins-Porcupine 705-235-3233 tpkidney@ntl.sympatico.ca Waterloo – Wellington & District 1-800-387-4474 ext. 4966 tracey.babineau@kidney.ca Windsor & District 519-977-9211 erika.muscat@kidney.ca
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www.kidney.ca/ontario
TRANSPLANTATION
Delayed Graft Function What happens when things don’t go as planned?
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by Dr. Ramesh Prasad, St. Michael’s Hospital, Toronto
The good news is that in about 90 percent of cases, DGF will resolve and the patient will no longer need dialysis.
Photos.com
www.kidney.ca/ontario
elayed graft function (DGF) is a medical term that means a kidney transplant is not working right away. Everyone hopes that the new kidney transplant will start to work immediately, and in fact many times the kidney starts to produce urine on the operating room table itself. However, about 25 percent of the time this does not happen. The new kidney does not produce any urine, the amount produced is very small, or the quality of the urine is not very good. As a result, it becomes necessary to continue dialysis after the transplant. The medical definition of DGF is the need for dialysis in the first week after transplant. Dialysis is needed when the blood potassium is very high, there is too much fluid in the body, or the patient feels sick because of accumulated kidney toxins. What causes DGF? There is always some injury to the kidney when it is taken out of one body and put into another. The kidney is always vulnerable to injury without its usual blood supply, although it is usually cooled down to reduce its energy needs. The risk of DGF is increased if the donor is old, since older kidneys do not handle the stress of transplantation as well as younger kidneys. Other risk factors include deceased donation, donation after cardio-circulatory death, and a long time between removal of the kidney in the donor and implantation in the recipient. Various chemicals accumulate inside the kidney when it does not have a blood supply, and when the blood supply is restored these chemicals spread throughout the kidney, causing more injury. Some drugs are now being tested to try to prevent DGF, but those kinds of studies are currently in a very early stage. There are no medications to kick-start the new kidney; it must recover on its own.
The good news is that in about 90 percent of cases, DGF will resolve and the patient will no longer need dialysis. The waiting time can be a week to several months. Patients do not need to stay in the hospital until DGF resolves, since kidney function recovery can be monitored in both the dialysis centre and the Transplant Clinic. You will have to continue your dialysis diet for a while longer. A transplant biopsy is sometimes needed to make sure that rejection has not set in. Serial ultrasounds may be performed to make sure the kidney has proper blood supply and urine drainage. As DGF gets better, the patient will first notice a larger amount of urine being produced. Symptoms like loss of appetite, weakness and swelling slowly improve. The amount of weight gain between dialysis sessions slowly reduces. Finally, the creatinine level in the blood gets lower when checked each time before the start of dialysis. If the creatinine goes down on its own without dialysis, it may be time to stop dialysis entirely. At that point we usually wait another week or two before recommending removal of dialysis lines, PD catheters, and such. Often the creatinine will decrease into the normal range after DGF. Although it is desirable to avoid DGF, it is unfortunately not completely preventable. On your part, if DGF happens to your kidney transplant, keep yourself mobile, avoid dehydration or volume depletion by maintaining an adequate diet, take all your transplant drugs as prescribed, avoid pain medications that can damage the new kidney, and do what you can to help control your blood pressure or blood sugar. Pay close attention to your incision and promptly report any unusual changes. The Transplant Clinic is here to guide you through this stressful time. Spring 2019 / Kidney Living /
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PERSONAL STORY
The Ups and Downs of Transplants
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Still the best option for the treatment of renal failure
by Heidi Westfield
Transplant outcomes can vary among patients. In some cases, transplant recipients recuperate well and enjoy a good quality of life after surgery. For others, a transplant can lead to complications that can have a profound impact on their health.
q Melanie, left, with her cousin (and donor),
Melissa
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elanie, who lives in Port Perry, Ont., describes her life after receiving a kidney transplant 14 years ago as a “roller coaster”. The 54-year-old former vice-principal has experienced some good years, but she has also had to deal with difficult setbacks. “It’s not a cure. You adjust to a new type of living just like you would with any kind of condition,” she says. “There is a gain, in that you are still here and you are able to do things and give back. It is a struggle, though, and big challenges remain.” Melanie’s health problems began when she was diagnosed with cancer as a baby. During a successful treatment for that disease she lost her left kidney. Later as an adult, she discovered problems with her one working kidney. She was in her 30s, a successful teacher and the mother of a young child, when she woke up with what she thought was a bug bite on her toe. It turned out she was suffering from gout, caused by poor renal function. Five years later, just as she was set to go on dialysis, Melanie was scheduled for a kidney transplant. Her cousin volunteered to be a donor, but there were some complicating factors. Tests revealed that Melanie had a very strong immune system, which increased the risk that her body would attack the donor kidney. Doctors suggested a procedure called intravenous immunoglobin (IVIG) therapy. “I was the first one at St. Michael’s Hospital to do the IVIG treatment to try to bring my system down before the transplant,” she recalls. “We had the transplant, but a week later I had an acute rejection.” The doctors managed to save the donor kidney, but she remained in hospital for months. Despite the rocky start, Melanie’s health stabilized and she was able to return to work and get back to her regular routine. Unfortunately, over the years her health has deteriorated. She is now on long-term disability, as she battles to gain control over stubbornly high blood pressure, recurring pneumonia, retinol hemorrhages and weight loss. Melanie is considering dialysis, and is hoping to get healthy enough to undergo a second transplant. She counts on the support of her friends, family and faith to help her get through the tough times. And on good days? She makes the most of them, finding joy in a lunch date with friends, or accomplishing tasks around the house: “As long as you can adjust to the new normal, you are good.”
www.kidney.ca/ontario
PERSONAL STORY
A Kidney for Nelson After nearly 20 years on dialysis—finally a transplant!
by Heidi Westfield
In October, 1995 Nelson learned he had kidney disease. He was 27 and had always enjoyed good health. When his eyes started giving him trouble, the Toronto resident set up an appointment with an optometrist. That is when, in his words, “everything started to unravel.”
www.kidney.ca/ontario
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he optometrist examined him and told him, “You have to go to the hospital right now!” At the hospital, doctors discovered his blood pressure was so high it was affecting his vision. Nelson had IgA Nephropathy, and had already lost most of his kidney function. “When the doctors said, ‘You have kidney failure, you have a disease,’ I was in complete shock. I didn’t know what they were talking about,” he recalls. Four years later Nelson reluctantly began dialysis with three, four-hour sessions a week. Nurses told him about a new initiative where patients could do hemodialysis overnight at home. He registered, did the training program, and soon his life took a turn for the better. “It was a game-changer,” he says. “I raved about it. I didn’t feel like I was on dialysis. There was so much freedom.” His blood work was so robust with 40 hours of nocturnal hemodialysis a week, that he did not need to take any medications to regulate his kidneys or blood pressure. He had a lot of energy for work, and for the activities he loved. “I was actually quite healthy for the longest time on dialysis,” he explains. “I wasn’t thinking about a transplant because my life was really good. I would work, then go to the beach and play volleyball. I could run, skate and ski. Sometimes on weekends I would go out to the clubs.” After about 10 years on dialysis, Nelson started to feel like his health was fading. He put his name on the waiting list for a transplant and started the medical work-up. During that process, doctors found a tumour in his adrenal glands that had to be removed. There were other delays, as tests uncovered a heart problem and kidney cancer. Fortunately, those issues were resolved and he was approved for a transplant. After nearly 20 years on dialysis, he got a call last December that a donor kidney was available. The transplant was successful but, months later, he is still getting used to life with a new kidney. “I did everything I could to prepare before the transplant, but it feels like I did nothing. It did not prepare me for the experience,” Nelson adds. “After you have a transplant there is an adjustment, and I am only now starting to do things again.” Once he feels healthier, he looks forward to travel, something he could not do while on home hemodialysis. His first trip will be to Australia, to visit friends and family. His advice to others: don’t dwell too much on receiving a transplant, and try to live in the moment. It is possible to achieve a good quality of life on dialysis. Spring 2019 / Kidney Living /
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ORGAN DONATION
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A Transplant Recipient’s Gratitude It’s a team effort
by Corrinne Ton That, Communications Specialist, Canadian Institute for Health Information
Donna Fleming holds Team Transplant’s mascot and the Gloria Santini Award for her work in organ and transplant awareness.
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efore pushing their dragon boat away from the dock, Team Transplant members toss a handful of green carnations into the sky, remembering those they have lost over the years and the donors who gave them a second chance at life. Donna Fleming, 64, founded the team more than 20 years ago to bring together transplant recipients, people on dialysis, healthcare workers, donor family members and those still on waiting lists to receive an organ. “We’ve developed a real bond—the people I’ve met here will be friends for life,” said Fleming. “Sadly, we’ve lost more than a dozen team members over the years.” Fleming counts herself as one of the lucky ones. She was born with one functioning kidney and, at just 16 years old, started having dialysis at Toronto’s Hospital for Sick Children three times a week. The timeconsuming procedure meant she had to stretch her last year of high school over two years. “I used to say that you get into such a rut of dialysis—everything revolves around you and the dialysis treatment and the medications and the special diet,” said Fleming. In 1973, eight months after starting dialysis, Fleming received a kidney from a deceased donor. That kidney, which she affectionately refers to as “Kidney Bean,” has allowed her to lead a healthy, active life for 46 years. Fleming knows her case is exceptional. Latest organ donation statistics from the Canadian Institute of Health Information shows that 74 percent of Canadians with a kidney transplant still have a functioning kidney after 10 years, while only 16 percent of Canadians on dialysis survive past 10 years. Outcomes for transplant recipients refer to the survival of the transplanted organs, whereas dialysis outcomes refer to the survival rate of patients. If transplanted organs fail, patients can still receive dialysis. After 46 years of good health, Fleming is now back on dialysis. This time, she’s on nocturnal dialysis at Toronto General Hospital, which requires her to stay overnight at a clinic three times a week. This allows her to keep working during the day at St. Joseph’s Health Centre in medical transcription. “Going back on dialysis was one of the hardest things I’ve ever had to do,” said Fleming. “I thought I was prepared for it, but when it came to the day where I had to go on dialysis again for the first time in such a long time, I was in tears. You really have to arrange your life around it.” Fleming is currently undergoing testing to determine whether her health is stable enough to receive a second transplant. In the meantime, she’s trying to stay as active and healthy as she can. As she waits to see what comes next, there’s one message she’s still actively pushing across to anyone listening: organ donation saves lives. “That kidney has been everything to me. It’s still there and still ticking away for me as much as it can,” said Fleming. “I’m grateful it’s lasted for so long and that it might give others hope that it will go that way for them as well.” www.kidney.ca/ontario
TRANSPLANTATION
Bone Disease After Kidney Transplantation Dealing with bone loss in transplant patients
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by Dr. Ramesh Prasad, St. Michael’s Hospital, Toronto
StoryBlocks.com
www.kidney.ca/ontario
one disease, specifically osteoporosis or “bone loss,” is a common but under-recognized problem after transplantation. Besides the usual blood and urine tests, kidney transplant recipients are reminded to have their bones monitored in the form of bone mineral densitometry, or BMD, at regular intervals. We often discuss BMD reports in the Transplant Clinic, particularly the “T Score,” which if less than -2.5 indicates osteoporosis. Here is some more information about post-transplant bone disease that you may find useful. Bone loss occurs early after transplantation. Some studies suggest bone is lost at up to two percent per year, but fortunately the rate of bone loss can be stabilized. Osteoporosis increases the risk of fractures. Most fractures occur in the hands, feet and ankles. Many patients come to transplantation after already having chronic kidney disease for a long time, and a burden of bone disease to go along with it. Other risk factors for osteoporosis include older age, female sex, low body weight, a family history of osteoporosis, diabetes, deceased donor transplantation, and the pre-transplant use of prednisone for native kidney disease. In the last case, it is helpful to undergo DXA (dual-energy x-ray absorptiometry) scanning before your transplant, to help with comparisons afterwards. Spring 2019 / Kidney Living /
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TRANSPLANTATION
Although improved kidney function after transplantation helps bone health, common anti-rejection medications can worsen bone health too. Drugs like prednisone and cyclosporine, as well as persistently overactive parathyroid glands after transplantation can all lead to more bone loss. All patients should therefore undergo a DXA scan at least once every two years, either through the family doctor or the Transplant Clinic. DXA measurements are usually taken in the spine and hip, to represent different kinds of bone in the body. Bone biopsies are usually not performed unless there is severe bone pain, before treatment is started. Osteoporosis can hopefully be prevented by early mobilization after the transplant, performing regular weightbearing exercises, and stopping smoking. The evidence associated with stopping prednisone at preventing osteoporosis is not good. The blood calcium, phosphate, 25-hydroxyvitamin D, alkaline phosphatase, and parathyroid hormone (PTH) level are often checked, and any abnormalities addressed. Oral calcium supplements are often helpful, and vitamin D can be considered if the blood calcium level is not high. Bisphosphonate drugs like alendronate, etidronate, and pamidronate are not used to prevent osteoporosis. Once osteoporosis is diagnosed, however, bisphosphonates may be used. Denosumab is an antibody that can also be used to treat osteoporosis, but data with denosumab and PTH analogues in transplant patients is very limited. These medications all have side effects, however, and so you must have a discussion with your doctor before starting any of these drugs. Regular follow-up BMD testing will be required. Sometimes a bone specialist can be consulted as well, for additional advice.
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#SixDegreeChallenge
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Canadians share their kidney connection while raising funds to help fight kidney disease
he Kidney Foundation launched the Six Degrees of Kidney Disease social campaign during Kidney Health Month. The campaign aimed to create a groundswell of conversation surrounding the prevalence of kidney disease among Canadians while raising funds to support The Foundation’s programs and research. The #SixDegreeChallenge invigorated a conversation on the connection so many Canadians have to kidney disease. With nearly one in 10 Canadians living with kidney disease, every person in the country knows someone with this ofteninvisible disease. To highlight these connections, the #SixDegreeChallenge campaign encouraged Canadians to share a picture of themselves throwing “The Six” (holding up six fingers), captioning it with their own story and connection to kidney disease. The campaign was led by Kidney Foundation partners, Canadian musical icon Tom Wilson and 2014’s Miss Intercontinental Canada, Delaney Holley. In addition to Wilson and Holley, stories of connection were shared throughout the campaign by other notable Canadians including Bif Naked, Cristina Howorun, Kathleen Wynne and The Tenors. In addition to sharing online, Canadians were asked to donate during the 24-hour day of giving on March 27 to support The Kidney Foundation in raising funds for research initiatives, patient support programs, and educational activities for their community. Over $31,000 was raised in the one-day effort. In addition, thanks to Canadians across the country sharing their connection to kidney disease with the #SixDegreeChallenge hashtag, three million people were reached, raising awareness online to eliminate the stigma surrounding kidney disease. Thank you for joining the conversation online and giving generously. www.kidney.ca/ontario
COMMUNITY HIGHLIGHTS
community highlights
t Italian Night Kidney Health Month kicked off in Ottawa with the 35th La Serata Italiana Italian Night celebration. The soldout event themed “An Italian Affair” raised $51,000 to support The Kidney Research Centre and The Kidney Foundation of Canada. To date, the group has raised over $1.2 million for kidney research. Congratulations to the amazing volunteer committee for a stellar event.
q World Kidney Day Breakfast in London
On March 14, The Kidney Foundation held an early morning breakfast to celebrate World Kidney Day. This year’s guest speaker, 12-year-old Keanna Shrubsall, shared her story about learning to live with kidney disease. Keanna was diagnosed with FSGS (Focal segmental glomerulosclerosis) at age 6. Dr. William F. Clark, Nephrologist was the Honorary Chair and CTV London’s, Sean Irvine served as our emcee for the morning. MP Peter Fragiskatos also joined us. The event provided a unique opportunity to launch the #SixDegreeChallenge in London. Pictured are the Renal Coordinators “throwing the six” in support of the challenge.
pIs that Delicious or Pastalicious?
It’s both! The annual Pastalicious event in Sarnia was held on February 22, 2019. Two sittings, complete with pasta, pizza and lots of laughs among the lunch-time crowd. Over $9,700 was raised to support programs and services to help individuals living with kidney disease. www.kidney.ca/ontario
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COMMUNITY HIGHLIGHTS uq World Kidney Day World Kidney Day was celebrated around the world on March 14. The 2019 theme, Kidney Health for Everyone, Everywhere, drew attention to the impact of kidney disease. It’s estimated that worldwide 850 million people have kidney disease from various causes. Chronic kidney diseases (CKD) cause at least 2.4 million deaths per year and are now the sixth fastestgrowing cause of death. Kidney Foundation volunteers participated in various events at hospitals and in the community to promote kidney health awareness.
Stay Connected...
p Cookin’ it up – Renal Style
The Kidney Foundation in partnership with the Niagara Health System Renal Dietitian, Claire Chartrand, cooked up some delicious conversation and recipes at a Cooking and Nutrition Education Workshop held at the end of March. The Real Canadian Superstore PC Cooking School partnered on the delivery of this event.
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Join the Conversation
@kidneyontario
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COMMUNITY HIGHLIGHTS
For details about events in your community, call The Kidney Foundation of Canada Chapter nearest to you, or visit www.kidney.ca/ontario.
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Kidney Connect Support, Scarborough Kidney Connect Support, Niagara Chinese Kidney Connect Support, Scarborough Celebrity Men in a Fashion Event, Windsor Kidney Connect Support, Kitchener Kidney Connect Support, Mississauga Kidney Connect Coffee Club, Oshawa Kidney Connect Support, Thunder Bay Kidney Connect Support, Ottawa Celebrity Men in a Fashion Event, Sarnia Comedy for Kidneys, Hamilton Kidney Connect Support, Mississauga Stand Up for the Cure Comedy Night, London
June 2019 4 5
Kidney Connect Support, Niagara Kidney Connect Support, Scarborough 12 Chinese Kidney Connect Support, Scarborough 12 Kidney Connect Support, Kitchener 14-16 Slo Pitch Classic in support of The Kidney Foundation, London 18 Kidney Connect Support, Ottawa 18 Kidney Connect Support, Thunder Bay 19 Kidney Connect Coffee Club, Oshawa 22 Hamilton Kidney Golf Tournament 26 Kidney Connect Support, Mississauga www.kidney.ca/ontario
July 2019
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Kidney Walks will take place in communities across Ontario. Dates and locations are posted at www. kidneywalk.ca 4 Kidney Connect Support, Scarborough 10 Kidney Connect Support, Niagara 10 Kidney Connect Support, Kitchener 11 Chinese Kidney Connect Support, Scarborough 17 Kidney Connect Support, Ottawa 18 Kidney Connect Support, Thunder Bay 18 Kidney Connect Coffee Club, Oshawa 23 Kidney Connect Support, Mississauga
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Kidney Connect Support, Scarborough Christine LaBrasceur Memorial Golf Classic, Sarnia Kidney Connect Support, Kitchener Kidney Connect Support, Niagara Chinese Kidney Connect Support, Scarborough Kidney Connect Support, Ottawa Kidney Connect Coffee Club, Oshawa Kidney Connect Support, Thunder Bay Go for the Green Golf Tournament, St. Thomas
August 2019 2-3 Otter Creek Jam Fest, Wallaceburg 7 Kidney Connect Support, Scarborough 13 Kidney Connect Support, Niagara 14 Kidney Connect Support, Kitchener 14 Chinese Kidney Connect Support, Scarborough 20 Kidney Connect Support, Ottawa 20 Kidney Connect Support, Thunder Bay 21 Kidney Connect Coffee Club, Oshawa 28 Kidney Connect Support, Mississauga
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Kidney Connect Support, Kitchener Kidney Connect Support, Scarborough Kidney Connect Support, Niagara Chinese Kidney Connect Support, Scarborough Kidney Connect Support, Ottawa Kidney Connect Support, Thunder Bay Kidney Connect Coffee Club, Oshawa Kidney Connect Support, Mississauga
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