Kidney living summer 2013 eng by The Kidney Foundation

KIDNEY

living www.kidney.ca/ontario

Summer 2013 Volume 6 • Number 2

A PUBLICATION OF THE ONTARIO BRANCH

Making a Splash at Splash Bash

What’s in this issue – Summer 2013 3 5 6 8

Good to Go Hitting your own stride Once, twice, three times! Get to Know your Kidney Healthcare Team

9 10 11 12 13 14 15 16

What Lifts Your Spirits? African-Caribbean Kidney Association Large Clinical Trials In the Comfort of Your Home Human Touch Awards

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Fast food? Not so fast! Inconvenient Truths about Convenience Foods Feeling Good, Inside and Out Mark This Date Canadian National Transplant Research Program Kidney Walk Community Highlights

Volunteers London Health Sciences Centre’s new Kidney Care Centre is truly blessed

Return Undeliverable Canadian Addresses t o: Tr i s h R e y n o l d s , C o m mu n i c a t i o n s Manager, Circulation Department, 1599 Hurontario St., Suite 201, Mississauga, ON L5G 4S1; email:communications@kidney. on.ca. Phone:1-800-387-4474.

Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca COMMUNITY CONTACTS African-Caribbean Kidney Association 1-800-387-4474 Ext. 4140 Brampton 1.800.387.4474 ext.4120 Brant County 1.800.387.4474 ext. 4130 Central Ontario 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474/905-278-3003 kidney@kidney.on.ca Chinese Renal Association 1-800-387-4474 Ext. 4977 pchan@kidney.on.ca Eastern Ontario 401 - 1376 Bank St., Ottawa K1H 7Y3 613-724-9953/1-800-724-9953 bhill@kidney.on.ca

Editing, design and printing by GEPM Group Inc. www.gepmgroup.com

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Recipe: Oven Roasted Chicken and Warm Mushroom Salad with Watercress

Kidney Walk Ambassador

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Cover photo: Former Canadian Olympian Carolyn Waldo; kidney transplant recipient Courtney Doyle; participant Janelle Stansel; Bruce Hill, Kidney Foundation of Canada.

The Kidney Foundation of Canada, Ontario Branch 2013 – 2014 Board of Directors Executive Terry Young, President Harvey Thomson, Past President Niloufer Bhesania, Treasurer Directors at Large Roza Berkowitz George Clark Craig Kerr June Martin Dr. Judith Miller Janet Morgan Ken Mylrea Shirley Pulkkinen Greg Robbins Mary Smith Susan Storey Executive Director Jim O’Brien Ontario Branch 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003

©2013. Kidney Living, the contents of which is subject to copyright, is published three times 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, please contact Trish Reynolds, Editor at treynolds@kidney.on.ca or 1-800-387-4474 Ext. 4981.

The appearance of advertising in Kidney Living does not imply an endorsement by The Kidney Foundation of Canada, nor guarantee the quality, effectiveness of any products or services.

Hamilton & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 Ext. 4969 jfraser@kidney.on.ca Kingston 100 Stuart St. Kingston, ON K7L 2V6 613-542-2121 alabrash@kidney.on.ca Niagara & District 1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-44746 Ext. 4969 jfraser@kidney.on.ca North Bay 1-800-387-4474 Ext. 4110 northbaykidney@gmail.com Northern Superior 605 Hewitson St. Thunder Bay, ON P7B 5V5 807-624-2680 kidney@tbaytel.net Sarnia-Lambton 546 Christina St. N., Main Floor Sarnia, ON N7T 5W6 519-344-3462 ehayter@kidney.on.ca

Sault Ste. Marie 514 Queen St. E., 2nd Floor, Suite 1 Sault Ste. Marie, ON P6A 2A1 705-949-0400 ssmkidney@shaw.ca Southwestern Ontario NEW! (effective April 2013) 785 Wonderland Rd. S., Suite 203 London, ON N6K 1M6 519-850-5362 mbrennan@kidney.on.ca Timmins-Porcupine 11357 Hwy. 101 E. Connaught, ON P0N 1A0 705-235-3233 tpkidney@ntl.sympatico.ca Windsor & District 1368 Ouellette Ave., Suite 310 Windsor, ON N8X 1J9 519-977-9211 kidney@mnsi.net Western Ontario (Kitchener/Waterloo) NEW! (effective April 2013) 785 Wonderland Rd. S., Suite 203 London, ON N6K 1M6 1-800-667-3597 ccoghlan@kidney.on.ca

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LIVING WELL

Good to Go For people living with kidney disease, travel preparations mean more than just packing a suitcase and buying a ticket. by Pamela Sleightholm

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here are many reasons why Canadians take to the skies for a trip away from home. Whether it’s a business trip, vacation or family matters, a few preparations can make flying with your own peritoneal dialysis machine a hassle-free experience. It’s important to keep in mind that airlines are strictly regulated on what they can carry. Dialysis machines aren’t something that every airline employee will have encountered, so knowing how to communicate your needs with them can make all the difference. If your machine is within the size and weight limits for carry-on baggage, you should be able to take it on board with you, but many dialysis machines are too heavy and will have to be checked. Regardless of how it’s stowed, you should not be charged any extra fees to travel with your machine. But size is only part of what needs to be addressed. Airline staff may be hesitant to allow a dialysis machine on board if they don’t have very specific information about its batteries. David Bolton, manager of dangerous goods compliance at Air Canada, says, “I recommend carrying a card in your purse or wallet with the battery’s details.” The information airlines need to know include the manufacturer’s name, what type of battery it is—for example, non-spillable, sealed lead acid or lithium ion—its size, voltage and number of amps. If you don’t know the specifics of the batteries in your machine, contact your patient care representative or the manufacturer. When Air Canada frontline staff have questions about a battery, the call will usually go to David. Since he’s not there to peek into the machine himself, giving him the information he needs will help him make a decision quickly so you can make it to your flight on time. Give yourself plenty of extra time before boarding to deal with any unexpected hiccups. Contacting your airline well before the departure date may reduce those delays in the first place. “Two weeks’ notice would be extremely helpful,” says Robert Palmer, WestJet’s manager of public relations. “This will give us time to obtain information about the specific device and evaluate whether it is safe to allow on the aircraft.” If you’re flying with Air Canada, employees at its Medical Assistance Desk are available prior to your flight to answer your questions; they’ll also make a note for the frontline staff you’ll encounter at the airport. If you’re traveling on another airline, or if you have to transfer to another airline, be Summer 2013 / Kidney Living /

LIVING WELL

Contact information for airlines: Air Canada Medical Assistance Desk Phone: 1-800-667-4732 Fax: 1-888-334-7717 Email: acmedical@aircanada.ca

WestJet Phone: 1-888-WESTJET

According to Heather MacDonnell, Baxter’s Communications Manager:

• There is no limit to the number of shipments that Baxter will make. However, each order needs to be approved by your PD team and Baxter needs to receive the details four weeks before travel in mainland North America, six weeks before travel to Hawaii, and three months before international travel • If you need to travel on short notice for an emergency, Baxter will assess those situations on a case-by-case basis, depending on the destination and that country’s requirements • Approved dialysis supplies are paid for by your home hospital. Check with your clinic and patient care representative about what else is covered. 

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• Contact your airline in advance and give yourself plenty of extra time at the airport • Make sure you have a sturdy carrying case for the machine • Travel with everything you need to manually dialyze in case your machine is lost or damaged • For longer stays, arrange to have supplies delivered to your destination • Before leaving, contact a dialysis center at your destination. Ask if they can help you in an emergency and record their address and phone number

Information about Peritoneal Dialysis supplies:

Clear out your closets.

Traveling with a dialysis machine tips:

• A doctor’s note may be necessary to carry dialysate or to travel internationally; check with your airline and customs • Carry a copy of your medical records, as well as details about your dialysis machine, especially its battery

sure to get in touch with them in advance. Ask about their policies for traveling with a dialysis machine, dialysate and any other supplies you may be carrying with you to avoid any surprises at check in.

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LIVING WELL

Hitting your own stride You have more control over your situation than you may think. by Dr. Trisha L. Parsons Ph. D, Assistant Professor School of Rehabilitation Therapy, Queen’s University Photo credit: BigStock.com/5360616

n his autobiography, The Long Walk to Freedom, former South African President Nelson Mandela wrote of his time on Robben Island, the place where he spent 18 of his 27 years in prison. While there, he lived in a small cell; his bed was the floor, his toilet a small bucket. Every day he worked in a rock quarry doing strenuous physical labour from sunrise to sunset. He had very limited contact with the outside world, but these circumstances did not break him. Rather, he emerged from this experience with a quiet dignity and determined voice which transformed his country. One of the elements he credits for providing him with both mental serenity and physical health during his incarceration was a simple practice; he would wake in the early morning, before sunrise, and run in place in his cell for 45 minutes. He would do this practice four days a week, and he would follow it with a few hundred sit-ups and push-ups. There are three lessons that can be highlighted from Dr. Mandela’s story: First, that exercise is at its most simple a behaviour, a habit of the human condition; second, the benefits of exercise, both physical and mental, add to our resiliency and help us to cope with even the most extreme challenges; and third, that the practice and the benefits of regular physical exercise can be achieved in even the smallest of confined spaces with minimal resources, provided the person has the right knowledge, skills and attitudes about exercise. The amount of exercise a person should perform is dependent on the individual, their health and their goals. The American College of Sports Medicine physical activity guidelines suggest a minimum of 30 minutes of physical activity on most days of the week. Before starting an exercise program, persons living with chronic kidney disease should consult with their nephrologist and/or doctor to ensure that their health status is stable and that they would endorse you in starting a new exercise www.kidney.ca/ontario

program. For those needing additional guidance, registered physiotherapists are an excellent resource to help individuals meet their health and physical activity goals. You can locate a physiotherapist in your community by visiting www. physiotherapy.ca/about-physiotherapy. The key to maintaining healthy exercise behaviours is to create a program that you can stick to in the long-run. 1. Set a goal. Do you want to walk to the park non-stop? Play tag with your grandchildren? Climb the stairs instead of taking the elevator? Participate in the Kidney Walk? Before you start, ask yourself what do you want to work towards? Then write it down, or better yet, tell someone else. 2. Wear a pedometer. A pedometer is a small device that clips to the top of your pants and will measure the number of steps that you take in a day. As a guideline, people living with a chronic health condition are advised to walk somewhere between 4,000 – 7,000 steps/day. This is a big range. The key message here is to start with measuring what you are currently doing and see how this stacks up against the guideline. Then, gradually, increase the number of steps you do. 3. Keep track. The thought of writing down every activity that you do can seem like a lot of extra work, but studies have shown over and over again that people who take the time to record their physical activity are more likely to be successful at sticking to their exercise plan and to achieve their goals. There is the added benefit that an exercise journal can help you to communicate with your healthcare team about what you are doing and if you are having any concerns. For those who are more electronically-minded there are several apps available; Moves for the iPhone is one of the top-rated free trackers www.moves-app.com/. 4. Investigate Community Resources. There are likely a number of community programs in your area which you

could use to help you with your activity goals. For example, information on walking trails or indoor walking clubs (when the weather is too hot or cold) are often available online through your public health unit. Many communities have access to health-recovery Tai Chi classes through their local branch of the Taoist Tai Chi Society of Canada. 5. Reach out for support. Many of us who start a new exercise program often fall off it again. We encounter new problems, a change in our health, and pressures in our home which make it challenging to maintain our new routine. Sometimes, we just don’t seem to be making progress toward our goals. Be kind to yourself. If you have fallen out of your routine, review your goals, look at your journal and remind yourself what you have accomplished. Then start again. If you stopped because you had started experiencing new symptoms (chest pain, shortness of breath, dizziness, worsening fatigue) tell your doctor or physiotherapist immediately. You may be eligible to participate in a Cardiac Rehabilitation Program in your local community. “The greatest glory in living lies not in never falling, but in rising every time we fall.” — Ralph Waldo Emerson 

Links www

For links to many of the resources cited in this article, please visit www.kidney.ca/kidneyliving. Summer 2013 / Kidney Living /

PERSONAL STORY

“I was a 22-year-old graduate, with a promising job on the horizon and I felt it all slipping away.”

Melissa and her father shared their inspiring story on the Rachael Ray show this spring.

Once, twice, three times! It gives new meaning to the old adage, “If at first you don’t succeed, try, try again.” By: Melissa Wilson

by Melissa Wilson

/ Kidney Living / Summer 2013

hen I say I have four kidneys, it’s no surprise that people look at me oddly. When I say only one works, people really start to wonder. For me, the shock value has long disappeared. I have to step back every so often and view myself through someone else’s perspective to realize that having four kidneys, three transplants and a collection of scars that would rival Frankenstein, is actually not too common. When I was born premature, the fact that I was exceptionally small was of little concern to my parents. When I was a toddler and was limping instead of walking, they began to suspect something was awry. As it turned out, I had rickets, due to poor vitamin D absorption, my bones were brittle and not forming properly. My parents knew this wasn’t the sole problem however. It wasn’t until I was referred to a doctor at Sick Kids and underwent further tests at age five that I was finally diagnosed with B.O.R Syndrome; which stands for branchio (relating to the neck) oto (relating to the ears and hearing) and renal (relating to the kidney). It is a genetic disorder with various symptoms. In my case I had hearing loss and renal failure. I was immediately put on a special diet and dialysis. While I adjusted to my new regime, my Dad was undergoing a series of tests to see if he could be a kidney donor. His blood type matched, he was healthy with no heart conditions or other health issues; however his arteries were far too large to match up with my toddler sized body. There was no other option for me except to go on the transplant waiting list. We were given a pager and began the wait for a kidney. Since the kidneys I was born with weren’t diseased or damaged, they remained in my body. On my Mom’s birthday, just three months later, we received the call. Truthfully, I don’t remember much about the experience. Apparently the doctors weren’t totally satisfied with the transplant itself; they felt the kidney wasn’t sitting right. I was peeing blood and my body wasn’t adjusting as quickly as hoped. I had a biopsy on my brother’s first birthday. After much discussion by a team of doctors it was decided to remove my new kidney. With my dialysis tube and central line still in place, it was a relatively easy transition for me to return to my dialysis regime and await another transplant. The second call came on Mother’s Day about six months later and this time we had success. My body responded immediately to my new organ; my cheeks had colour, my lips were red and I had an overall sense of health and well-being. www.kidney.ca/ontario

PERSONAL STORY This special gift gave me a very active and normal life for 16 years. Besides the occasional ear infection, cold or flu, I was very rarely sick. It wasn’t until the fall of 2011 that I started to feel really ill. I was commuting to Toronto from Oshawa for a job, working on weekends and exercising in my spare time. The fact that I was fatigued and feeling lethargic didn’t register to me as something unusual. My doctor, noticing my blood work, saw my creatinine was quite high. Adjustments to my medications and fluids didn’t really help and I was told that my kidney was failing and I’d need another transplant. You’ve probably seen in movies that feeling where everything starts going in slow motion, voices become distant and muted and you can hear your heart beat, that’s how I felt when the news was spoken aloud. I was also overwhelmed with a heavy sense of dread and helplessness. I was a 22-year-old graduate, with a promising job on the horizon and I felt it all slipping away. I became depressed, not wanting to see my friends, rarely going out, and feeling moody and irritable most of the time. I was not happy with the way I was acting, but I wasn’t happy with my life. It was very difficult to rise above what to me, was my life falling apart. It felt entirely unfair. To keep myself busy I tried to volunteer locally and actually still kept applying for jobs, but after a few weeks, I realized that if I couldn’t depend on my body, there’s no way an employer could depend on me. I was feeling extremely tired. My appetite was almost nonexistent, and the foods I used to love would make me nauseous. It became common for me to nap every day for at least two hours. My friends were all working, going out, and beginning their adult lives. I tried to be optimistic and

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positive for those around me, but it was difficult when I hardly believed it myself. As soon as we learned I needed another transplant, my Dad began the process to see if he was still a compatible match. It had been 16 years and despite him being in the best shape of his life, a lot can change in a person over that period of time. Because of his healthy, active lifestyle, he went through the process a lot faster than the average candidate. At the same time I was becoming more ill, and I had many set-backs. It was determined that I was too weak and would need to put a transplant on hold. I cannot begin to describe how devastating it was to hear that. I felt as if the one thing that would rid me of my poor health and increasingly poor quality of life, was almost unattainable. I started dialysis and still faced many more setbacks. By this point, my Dad had gone through all of his tests and was officially cleared to be my donor. Once I gained enough strength, weight and energy, I started to run, cycle and do cross training in preparation for my transplant. I wanted to be as strong as I could be going into my surgery. One day I came home and my Dad casually told me the hospital had called. My eyes bulged and I couldn’t suppress my grin. My transplant coordinator told us there were two immediate openings within the next two weeks. I was so excited. Since my Dad’s kidney needed to be “harvested” for me, his surgery was a few hours before mine. It went seamlessly and he recovered well. However, I hit a bit of a speed bump. Moments before heading into the operating room, the doctors ran one final test, and the anesthesiologist found a mass near my heart. It was a blood clot. If my Dad’s kidney hadn’t been already removed; the transplant would have been

cancelled. To have a blood clot is serious, to undergo an operation with one is another matter altogether. But with my Dad’s kidney waiting, the transplant continued. My recovery afterwards was as expected. I was in intensive care for about five days. I started a new regime of medications and began to heal. I was moved to the Transplant floor, where I continued to move around more and more, reduced my pain medications and began to eat solid food. I met with my health care team, educating myself for life at home with my new kidney. The blood clot delayed my discharge. Through careful monitoring and lots of tests, it was decided that the clot was non-life threatening, I was finally allowed to go home. Once home, I settled into my daily life. I was still recovering from surgery so it wasn’t uncommon for me to nap or get tired easily. The blood clot was carefully monitored, and I’m happy to report it has disappeared. After three months of inactivity I was cleared to exercise. It seems that my Dad’s kidney is so big (it actually sticks out of my stomach) that it has the functionality of two kidneys; very lucky for me! Feeling healthy enough to commit to a routine schedule, I secured an internship in my field. I’m socializing a lot more than I was a year ago, going out and doing things like any normal person would. I’m finally starting to feel like my life is beginning, like I’m finally on track with my health, my career and my life. I know it sounds cliché, but I truly do feel that after the past year, I really can do anything. There are not a lot of ordeals or challenges that equally compare to an organ transplant; and I’ve gone through it not once, not twice, but three times. For that, I feel pretty lucky. 

Summer 2013 / Kidney Living /

RENAL PROFESSIONALS

Get to Know your Kidney Healthcare Team Part 2 of a two-part series by Trish Reynolds

Photo credit: Photos.com

n the last issue of Kidney Living, we introduced you to a number of members of your kidney healthcare team and described their role in your kidney health care. There are many variations from one renal program to another: your program may have different members. Remember, no question is a bad question. Your healthcare team is there to help you through your journey. Your nephrologist is a doctor who is a kidney expert. Together with you and the other members of your healthcare team, the nephrologist plans the best treatment for you and oversees your care. You may also see other specialist doctors including a urologist or a vascular surgeon. A surgeon is a doctor specially trained in surgery. A surgeon might perform the operation to establish access for dialysis and would do the surgery to transplant a kidney. The transplant recipient coordinator helps coordinate the necessary tests, consultations and other activities to determine a patient’s suitability to receive a transplant. The coordinator can also provide information about receiving a kidney transplant from either a deceased

/ Kidney Living / Summer 2013

donor or from a living donor. After the patient’s nephrologist writes the order to initiate the transplant assessment, preliminary investigations are completed by the clinic or dialysis unit. The transplant coordinator reviews the information for completeness and then books the patient to meet members of the transplant team (surgeon, nephrologist, coordinator, social worker and anesthetist). Once the recipient has been approved for transplant, he or she can receive a compatible living donor kidney or “go active” on a deceased donor list. Jennifer Cross, living kidney donor coordinator with the Multi-Organ Transplant Program at London Health Sciences Centre, says the most frequently asked questions are often from people wanting to learn if they can donate one of their kidneys and how they go about getting the process started. Cross explains what is involved in living kidney donation and tells potential donors about the benefits and risks of donation, including that they may have barriers that prevent them from being a kidney donor. “All potential donors need to undergo a medical and social assessment which includes questionnaires,

investigations and physical examination to assess their health,” says Cross. The team who assesses the living donor is different from the team who assesses the recipient to ensure each patient gets the specialized care they require. If the living donor is not compatible with the recipient, he or she may want to consider the National Living Donor Paired Exchange Registry, and Cross can also provide information about this process for those who are interested. Many hospitals are teaching hospitals so you may come into contact with students, interns and residents in various departments of the hospital, such as dialysis programs. Sometimes these “trainees” also work with the dietitians, nurses, social workers and pharmacists. If you are admitted to hospital, you may come into contact with an occupational therapist. Occupational therapists work to break down the barriers which impede individuals in their everyday activities. They address not only the physical impacts of an illness, but also consider the psychosocial, community and environmental factors that affect daily function. Medication is an important part of your renal treatment. The hospital or community pharmacists will provide information and support to help you manage your medications. The pharmacist can answer questions about the medications you are prescribed, including how and when to take them. Pharmacist Remi Ojo, says that he cannot emphasize enough how important it is for patients to be compliant with taking their medications as prescribed. “Don’t discontinue taking your prescription because you think it’s not working, or if you are not feeling well. Talk to your pharmacist and let them know how you are feeling,” said Ojo. It is also highly recommended that you have all of your prescriptions filled at one pharmacy to ensure that the pharmacist has a complete picture of all the medications you are currently taking. “If for some reason you need to use another pharmacy, let the www.kidney.ca/ontario

LIVING WELL

What Lifts Your Spirits? pharmacist know where you regularly get your prescriptions filled. They can get the history of your medications and provide the best advice possible,” added Ojo. In addition, you should only take medications prescribed (or approved) by your physician (this includes supplements, nonprescription items, herbal remedies, etc.) Spiritual care providers or Chaplains are available in most hospitals to provide support to you. You do not need to follow any faith to use this service, and support is available to everyone. You, too are a member of the team. Remember the most effective way to manage your health is to be an active participant in your care. Ask questions, and provide your healthcare team with accurate information. Learn as much as you can about how to manage your disease and follow the advice of your care providers. The Kidney Foundation of Canada is also here to help you. Nationally, the Foundation offers four core services for people living with kidney failure: information and referral, educational materials including the Living with Kidney Disease Manual, fact sheets and brochures, short term financial assistance and Kidney Connect Peer Support. Learn more about The Kidney Foundation’s Programs and Services by visiting w w w.kidney.ca/ ontarioprograms. 

With information from the Living with Kidney Disease Manual.

We are so much more than the sum of our parts

Sophie and Solomon. Photo courtesy of Gary Payne,

St. Joseph’s Hospital

by Lorraine Dick, Spiritual Care Provider, St. Joseph’s Healthcare, Hamilton

any of us would say that we live in our body, mind, emotions and spirit. Yet, how often do we take care of all of these parts of our lives? As a hospital chaplain I have seen that there are many different ways in which to attend to our spirit. Spirituality itself has been described as that part of us which longs for meaning, integrity, love, acceptance and hope. I have found spirituality to be a broad concept that includes recognition that we are more than our physical selves; the search for meaning and purpose; and the connections we make with ourselves and with others. Attending to the spiritual can be as simple or as complex as you would like it to be. Sometimes you may be called to listen and be present—to what is happening inside and outside of you. Other times you might sense a need to struggle with who you are and why you are on this earth, or you may sense the need to just let go. Sometimes you may just need to share your thoughts and feelings with someone in order to be ready to move towards the next thing that is facing you. I had visited M often during his various stays in the hospital. I knew he was facing another operation and that this time his life might change considerably. I decided to stop by. When I knocked on his door he invited me in eagerly. I sensed the anxiety and urgency in his voice as he talked about his childhood and the many challenges he had faced then. He cried often while sharing how he was hurt by others and how he felt he had hurt himself. When he was finished, he looked relieved and then said quite matter of factly, “I had been holding that in for a long time. Now I am ready for my operation.” This vignette shows what was important or meaningful for M right then. I thought our conversation was very spiritual and healing. When I ask people, “What lifts your spirits?” I find that faces light up and there are many answers such as, conversations, hugging someone, working with others, connecting with religious communities, prayer, sports events, animals, nature, music, dancing and art—just to name a few. From time to time it is good to ask yourself, “What lifts my spirits?” and then try to incorporate the answers you come up with into your life. Other questions to consider might be, “How does my kidney disease affect my spirit?” or, “What is important or meaningful for me right now?” You may also want to think about where you have found strength or hope in the past. As you continue your journey with kidney disease there may be a few more things to consider. Be gentle with yourself, honour your feelings, and talk about them with people you can trust. Remember ways you have made adjustments in the past and try to keep life as normal as possible. Thank you for your presence in this life and may light and strength be with you wherever you go. 

Most hospitals in Ontario have Spiritual Care Services. You can ask to speak to a Spiritual Care Specialist if you’re interested in speaking with someone further.

www.kidney.ca/ontario

Summer 2013 / Kidney Living /

BUILDING A FOUNDATION

t African Caribbean Kidney Association (ACKA) volunteer nurses at the first SeeKD Screening. SeeKD is The Kidney Foundation of Canada’s national targeted screening program for chronic kidney disease (CKD). The program, titled “See Kidney Disease” or SeeKD, enables The Kidney Foundation to fulfill one of its cornerstone mandates: early detection and prevention of chronic kidney disease (CKD).

African-Caribbean Kidney Association The Kidney Foundation reaches out to wider communities

he official launch of the African-Caribbean Kidney Association (ACKA) Chapter of The Kidney Foundation of Canada was held on March 21, 2013 at the Scarborough Civic Centre. The group, in existence for almost three years, has now teamed with The Kidney Foundation of Canada to better serve the African-Caribbean community. After a successful launch, ACKA continued the momentum by participating in a health fair on April 27, hosted by the Canadian Diabetes Association and conducted its first SeeKD targeted screening. There was great participation of volunteer nurses and ACKA’s volunteer president, Dr. Remi Ojo, who all worked tirelessly throughout the day and screened approximately 50 individuals. African-Caribbeans include peoples of West Indian background and whose ancestors were primarily indigenous to Africa. The culture is multi-faceted, dynamic and vibrant. Unfortunately, the African-Caribbean community is included in the high risk ethnic group and has a disproportionate burden of chronic kidney disease (CKD), which tends to have an earlier onset and a more rapid progression in this population. A high percentage of the community’s population is afflicted with diabetes and hypertension, two of the leading causes of kidney disease. Many of the factors responsible for the rapid progression of CKD in the African-Caribbean community are detectable by screening and reduced through lifestyle modification. Prevention plays a critical role in improving health, and as such, it is important to educate the community on how to identify and reduce their risk of this disease. Sometimes the healthcare system can be intimidating, especially when one is unfamiliar with medical terminology, so it is important to help navigate through language and cultural barriers. Education and community outreach are critical tools in demystifying the healthcare system and it is important that this high risk community have the opportunity to connect with people within their own culture to learn, share stories, and to ask questions they would normally be intimidated to ask their doctor. Accordingly, ACKA’s main goal is to help to reduce the burden of kidney disease within the African-Caribbean community through education, awareness and prevention. It strives to be a connector within the African-Caribbean community to The Kidney Foundation of Canada in providing supportive programs to individuals in need, implementation of strategies to raise public awareness of risk factors, and prevention of complications from kidney disease. 

/ Kidney Living / Summer 2013

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MEDICAL RESEARCH

Large Clinical Trials Testing treatments for people living with kidney disease

A Nephrologist and Clinician Scientist in the Division of Nephrology and Transplantation and Department of Clinical Epidemiology and Biostatistics at McMaster University and Population Health Research Institute in Hamilton, Dr. Michael Walsh undertook a KRESCENT Program Post-Doctoral Fellowship in lupus nephritis and vasculitis at Cambridge (UK). Recently awarded a KRESCENT Program New Investigator Award, he is also studying heart-related deaths among people on dialysis. “KRESCENT provided the outstanding intellectual environment and support that were key to establishing my research programs. I began my research with Dr. Braden Manns during my Master’s degree in Calgary. He really got me started.” Dr. Michael Walsh

r. Walsh is working with Dr. Ron Wald of St. Michael’s to better understand a vexing conundrum. “When we began to tackle the question of heart-related deaths for people on dialysis,” says Dr. Walsh, “what struck us is how common heart disease is for people on dialysis.” While cardiologists have found reliable treatments for heart patients not on dialysis, nephrologists don’t as yet have treatments proven to help prevent heart problems in patients on dialysis. Dr. Walsh explains: “Aldosterone, a hormone released by the adrenal gland, raises blood pressure. Eplerenone is a treatment used effectively in non-dialysis patients that blocks the action of aldosterone. What we want to prove is that it can safely reduce heart-related deaths in dialysis patients.” Currently in the first phase of a Canadian Kidney Knowledge Translation and Generation Network (CANN-NET) project, Drs. Walsh and Wald are testing eplerenone’s safety more than its effectiveness. “In the next phase, we will conduct the research internationally.” Dr. Walsh already has considerable international research experience through his work with the European Vasculitis Society. Says Dr. Walsh, “The research has been going on for a number of years. Because vasculitis is uncommon, it is difficult to study. But we have a robust network and very involved patients and physicians who are interested in the research. We’re starting to answer questions and create a model that we can apply to kidney disease research. Where people used to say, ‘it’s not possible.’ we’re upping the ante.”

Dr. Walsh will be one of the guest speakers at Impressions 2013 in Hamilton. Online ticket sales for the November 28 event at Liuna Station, are available at www. kidney.ca/ontarioevents. Call Jennifer Fraser at 1-800-387-4474 Ext.4969 for more information.

Kidney Research Scientist Core Education and National Training (KRESCENT) Program The KRESCENT program is focused on the recruitment and training of world-class kidney scientists who will subsequently assume leadership roles in kidney research in Canada. It is a unique program in three key ways: it recruits trainees from multiple disciplines, for involvement in a national curriculum; it supports career development at the (post-)doctoral level and in the period following the candidate’s first faculty appointment, with ongoing mentorship support; and it fosters the development of collaborative research and knowledge translation across research themes. Created through a special collaboration of the Canadian Society of Nephrology and The Kidney Foundation of Canada, the Canadian Institutes of Health Research (CIHR) Institute of Nutrition, Metabolism and Diabetes and the CIHR Institute of Circulatory and Respiratory Health, the KRESCENT program is a testimony to the leadership of many individuals, organizations and companies committed to reducing the burden of kidney disease throughout Canada.  www.kidney.ca/ontario

Summer 2013 / Kidney Living /

LIVING WELL

In the Comfort of Your Home More and more kidney patients are finding home dialysis manageable by Mary Baxter

decade ago, Toronto resident Lisa Zhu learned that she had kidney disease. Until recently she was able to manage the disease without dialysis. But when her kidneys suddenly failed Zhu was unprepared for what came next. Ontario’s hospital nephrology programs are working hard to make Zhu’s abrupt thrust into the unknown a thing of the past by adding new educational initiatives and using innovation to make home dialysis a viable option. Through its Patient First program, the nephrology section at St. Joseph’s Healthcare in Hamilton, for example, has long made it a priority to help patients early on to explore and choose their management therapies. Last year the hospital enhanced the program by adding a nurse practitioner to help patients “navigate through those decisions,” says Dr. Darin Treleaven, head of the hospital’s nephrology program. Staff didn’t stop there: One of the barriers to home peritoneal dialysis (PD)

/ Kidney Living / Summer 2013

is the wait to obtain surgical insertion of the peritoneal dialysis catheter. To ease the bottleneck, two of the hospital’s nephrologists were trained to do the procedure. “That’s resulted in an explosion of peritoneal dialysis,” Treleaven says, who estimates its use is up 51 percent over the last two years among the hospital’s kidney disease patient base. Diane West, 67, acknowledges that she would not have tried PD if it hadn’t been for St. Joseph’s education efforts. West, a retired nurse, was convinced “there would be a lot of mess involved” doing PD at home—“tubes and all of that”—so she opted for hemodialysis at the hospital after her kidneys failed in 2012. Once clinic staff showed her how PD worked, however, she realized it was manageable. Because of the changes introduced by the hospital, she obtained her catheter two weeks after her decision and could quickly begin training. Shortly after that—and despite a broken wrist from a fall on her way to her last hemodialysis

appointment—she was using PD at home. Zhu, 43, chose home hemodialysis, but she had zero medical experience and the idea of managing the procedure herself was terrif ying. An innovative new education approach at the Toronto General Hospital, however, helped to calm her fears. Towards the end of her training, Zhu was referred to the hospital’s Oreopoulos Innovation Centre, a room that resembles a bedroom—complete with a bed, TV, dresser and pictures on the wall—so patients can experience what it will be like to do dialysis at home while still safely in hospital. “It’s good,” Zhu says. “You actually go there and you’re by yourself but the nurses are only a phone call away.” The room has been in operation since March and so far, about six people have gone through, says Janice Ritchie, clinical manager of the hospital’s dialysis units and renal management clinic. She calls it a success. A separate area for hemodialysis that was introduced in January shows promise too. Called the dialysis start unit, it’s meant for people who, like Zhu, have had to start dialysis urgently and are not aware of their home-based options. Dialysis is not the only service on offer: “We start educating patients and learning about them and helping them decide what type of home-based dialysis would work with them,” Ritchie explains. Nephrology treatment teams have recognized that nothing beats being prepared ahead of time, Treleaven says. Predicting the exact time when kidneys will fail is difficult, so having a plan that can be deployed rapidly becomes a necessity. “People want to be able to make the decision when they’re healthy and do it in a realistic way. When you’re feeling sick it’s not the easiest time to do that.” 

www.kidney.ca/ontario

RENAL PROFESSIONALS

Human Touch Awards

he Human Touch Awards recognize healthcare professionals, providers and volunteers who demonstrate exemplary and compassionate patient care in Ontario. The awards, initiated seven years ago by Cancer Care Ontario, are an opportunity to emphasize the importance of the high touch aspects of cancer care and the role that it plays in a patient’s overall treatment experience and wellbeing. This year, the Human Touch Awards also included the Ontario Renal Network and recognized individuals from the renal system. Congratulations to the following individuals recognized for their outstanding contributions to renal patients.

HUMAN TOUCH

Marsha DeFrancesco, Registered Nurse, CNeph (C) the Home Dialysis Coordinator at the Algoma Regional Renal Program/Sault Area Hospital Marsha is adored by her patients for her gentle, reassuring approach. She embraces new challenges and always has an eye for improvements for patients. The patient’s wellbeing is at the core of her approach. Marsha does all she can to help patients feel comfortable transitioning to doing exchanges themselves at home, including calling them regularly for the first few days to ensure they realize she is just a phone call away.

Marlene Rees-Newton, MSW social worker in the renal program at London Health Sciences Centre

AWARD WINNERS

Marlene treats everyone she meets with dignity and respect. She feels that every visit is a story—and there are many. Patients and family members always feel comfortable sharing their concerns with her. A strong believer in education, Marlene has worked hard to advance the quality of chronic kidney disease education and decision support at the centre.

Carolyn Bowman, Program Manager, The Regional Kidney Care Program at the Simcoe Muskoka Orillia Soldiers Memorial Hospital Carolyn is seen by her team as a mentor and friend as well as a colleague. She makes it a point to know patients and families by name. Her commitment to patients goes above and beyond the call of duty. Her forward-thinking vision helped propel a satellite unit in a community hospital to a world-class program that offers services to patients close to home at any stage of their kidney disease.

Terri Bradshaw, patient and volunteer with The Scarborough Hospital Terri demonstrates a commitment to care through exceptional volunteer work that enhances the quality life and care for renal patients. A strong patient advocate and Chair of the Peer Support Group at The Scarborough Hospital, Terri is always looking for new ways to provide innovative and creative ideas to enhance the patient experience. She provides life lessons for us all—and always with a smile. 

ForDonorsOnly.com ForRecipientsOnly.com www.kidney.ca/ontario

Summer 2013 / Kidney Living /

FUNDRAISING

Kidney Walk Ambassador Walking the walk is not just a once-a-year thing. by Heidi Westfield

aleb Robson has great memories of his first Kidney Walk. It was a rainy day in Perth, Ontario, but Caleb says everyone had smiles on their faces on the day of the Kidney Walk. He and his team, The Dialysis Racers, made their way along the five-kilometre trek, meeting other families, and getting to know people in their community. “We had an awesome time,” says Robson. “It was comforting to have the support of my family and friends. And it was for a great cause—my cause. That’s the way I look at it.” Caleb learned he had kidney disease back in 2007, after a visit to a Smith Falls emergency room. Until then, he didn’t think about his health all that much. He had a busy family life with three children, and a job as an auto parts manager. That day, though, he was feeling sick enough to stop what he was doing, and head to the ER. Doctors did some tests, and found a problem with the creatinine levels in his blood. He was sent to a specialist in Kingston, who discovered kidney disease, IgA Nephropathy. “At first, when the doctor told me, I didn’t understand the severity of it. I thought, okay, what do we do now? Is there a pill for it, or what?” He soon discovered there were pills—lots of them. They helped stabilize his condition, and for a while life returned to normal. Then, after about a year, doctors started talking about other options, about a possible transplant. His sister, Jodi Neddo, was found to be a match. “I was excited. I remember getting the call at work,” Jodi says. ‘Oh! We’re a match!’ And my colleagues yelled, ‘Congratulations!’” Despite the risks, Jodi says she didn’t think twice about offering a kidney to her brother, someone she sees as a hero. But there was a problem: Before a transplant could happen, doctors found a tumour in Caleb’s pancreas. Surgery to remove it led to health complications that kept him off work for months. While on dialysis, he developed diabetes. Then last year, more health issues and surgeries forced doctors to put off the transplant for at least five years. The setbacks tested Caleb’s resolve to stay upbeat, no matter what. “It’s all in a person’s attitude,” he says, looking back at years of hospital visits and surgeries. “You can say, ‘Why me? Woe is me!’ or you can accept it and say, okay, it is what it is. What can we do about it? I treat it as a battle that I am going to win.” Caleb also credits the nurses at his Smiths Falls, Ontario dialysis unit, with helping to keep his spirits up. At one critical point, they counseled him to bring his weight down. He was tipping the scales at 276 pounds—“Too high,” they said, for his own good. That was last spring. Since then, he’s lost nearly 100 pounds. It was around this time that Caleb spotted a poster for a Kidney Walk at his dialysis unit. He rounded up family and friends, and The Dialysis Racers were born. Despite recent surgeries, Caleb is determined to be at this year’s walk in September. And he’s earned a new title: Kidney Walk Ambassador. Bruce Hill, of The Kidney Foundation’s Eastern Ontario Chapter, says he was very impressed with Caleb’s positive disposition. “I am of the belief he can best rally all kidney patients and healthcare providers to participate in this walk.” Caleb has this advice for others in his situation: “Don’t fret it. There is so much support out there from The Kidney Foundation, from fellow patients, and nurses. Accept it, and keep moving on with your life.” 

/ Kidney Living / Summer 2013

Caleb and his sister Jodi Neddo

www.kidney.ca/ontario

VOLUNTEERS

Connect with someone who understands 1 866 390 PEER (7337)

If you or someone close to you has kidney disease, sometimes it helps to talk about it. The KIDNEY CONNECT Peer Support Program puts you in touch with other people who are affected by the disease. They’ll share their own experience with treatment, lifestyle, family and work issues. And they can answer many of your questions because they’ve been their too.

“We were completely blind-sided by the diagnosis and I had so many questions. You can read text books and manuals but there is a time when you need to talk to someone, someone who understands.” Kidney Connect Program Participant

www.kidney.ca

www.kidney.ca/ontario

Terri (centre holding the award) and the Scarborough Peer Support Group at the Central Ontario Chapter Volunteer Celebration in April. The group was recognized for their outstanding leadership and support of the Scarborough Kidney Walk.

Volunteers The Power of Peer Support By Heidi Westfield

hen Terri Bradshaw was recognized for her volunteer work at Scarborough General Hospital, it came as a surprise. “You don’t do things for awards, but when you get one, it is pretty special.” Terri is on home hemodialysis and is very active with the hospital’s Home Dialysis Peer Support Group. She was honoured in the spring by the Ontario Renal Network for enhancing the quality of life of renal patients. The group she now leads is one Terri admits she probably wouldn’t have joined when her kidneys started to fail more than a decade ago. Her diagnosis came as a shock, out of nowhere; just as her children were finishing school, and she and her husband were looking ahead to a new chapter in their lives, filled with travel and new adventures. “It came like a sledgehammer,” she says. “I was incredulous; how could this happen to me?” Terri remembers being angry quite a lot back then. Peer support wasn’t something she thought about, or wanted. “I looked horrible, I felt horrible. Unless you had a magic cure in your pocket I didn’t want to talk to you.” After starting peritoneal dialysis, her health improved. And then, in 2008 Terri began home hemodialysis, and started to feel much better. It was around then, that a nurse asked if she would join a peer support group, entirely run by patients with just staff advisors. She agreed. “Once I got involved, I realized this is so what I needed before, and it wasn’t available at that kind of level.” Terri has spent the past five years as the group’s Chair. She has seen first-hand the power of peer support, and the difference it makes. “Only someone who has been in the place you are in can talk to you about how it feels. How it feels to go in your closet and not have one thing that fits you; how it feels to have “moonface” from prednisone. A doctor or nurse can’t tell you that, they’ve never experienced it. We fill that void for so many individuals.” She believes it’s important to reach out to people on dialysis, rather than wait for them to join a support group. “I needed someone to come to me,” she remembers. Today, whenever she is at the hospital or clinic, she makes a point of approaching patients and asking how they are doing. That way, questions are answered, and a relationship is established. Her advice to others? Try to take control of your health care and, as much as possible, stay positive. She recognizes it isn’t always easy, but it has helped her emerge from those difficult first years, to someone who is able to travel, enjoy her grandchildren and help so many others.  Summer 2013 / Kidney Living /

WORKING TOGETHER

London Health Sciences Centre’s new Kidney Care Centre is truly blessed Aboriginal spiritual ceremony welcomes patients and staff into new space

ust before sunrise on Saturday, October 20, 2012, London Health Sciences Centre staff and patients were joined by hospital partners and Aboriginal communit y members for a spiritual opening of LHSC’s Kidney Care Centre (KCC) in Westmount Shopping Centre; specifically, the Aboriginal resource room located within the KCC. The spiritual ceremony was held before LHSC’s new Kidney Care Centre officially opened for patient care on November 5, 2012. “During the blessing we are bringing positive energy into the space that will welcome all members of the Aboriginal community, all patients who will receive care here and the staff who will provide care,” said Ray John Jr., Aboriginal community member, who, with the help of his son, Walker Antone-John, provided the blessing. The Aboriginal resource room is a resource and education room available for use by everyone at the Kidney Care Centre.

The room contains Aboriginal medicines including sweet grass, sage, cedar and tobacco, resource information about Aboriginal cultures as well as Aboriginal arts

The Kidney Foundation of Canada, Southwestern Ontario Chapter office recently re-located and is now just a few steps away from the new Kidney Care Centre in the Westmount Shopping Centre. This new location provides us with opportunities to meet and engage more closely with our patients, their families, renal professionals and other community partners. and crafts. “The room can also be used as a quiet space for family members while their loved ones receive care,” adds Carlene Mennen, registered nurse and certified diabetes

From left, Ray John Jr. smudges the Aboriginal resource room and provides an Oneida blessing with Jim Bobb, community member, who blessed the room in Ojibwe, AntoneWalker, who provided the sunrise blessing, and patient Blake Kechego. (Photo courtesy of London Health Sciences Centre).

/ Kidney Living / Summer 2013

We’ve moved!

educator, Southwest Ontario Aboriginal Health Access Centre (SOAHAC). SOAHAC provides resource materials for the room. The morning began just inside the front doors of Westmount Shopping Centre where Walker Antone-John provided the sunrise blessing. The blessing was followed by a smudging ceremony conducted by John Jr. inside the Kidney Care Centre. The smudging began in the reception area of the KCC, moved to the Aboriginal resource room and proceeded throughout the entire 32,000 square-foot facility. Within the Aboriginal resource room, a special blessing was provided by John Jr. and community member Jim Bobb. John Jr. provided an Oneida blessing and Bobb provided an Ojibwe blessing. Both represented inclusiveness to all Aboriginal cultures. Heather Jones, RN, LHSC, feels the Aboriginal resource room connects her patient care work with her Aboriginal heritage. “This is another way to open lines of communication between patients and their caregivers. It will certainly make patients feel more welcome and comfortable.” The new Kidney Care Centre (KCC) will www.kidney.ca/ontario

PERSONAL STORY

provide services and resources to approximately 1,200 renal patients yearly. Providing care in a community setting will help promote a wellness environment, which in turn will enhance the patient experience.

Oven Roasted Chicken and Warm Mushroom Salad with Watercress

Services in the new facility include:

Source: Leslie Cairns www.kidneycommunitykitchen.ca

• In-facility hemodialysis treatment for chronic dialysis patients on an outpatient basis • Peritoneal and home hemodialysis assessment, training and maintenance • Chronic Kidney Disease clinics and health education • Aboriginal resource room containing Aboriginal medicines, resource information about Aboriginal cultures as well as Aboriginal arts and crafts • Support centre for the regional satellite dialysis units 

Diet Type: High Protein / Low Phosphorus / Low Potassium / Low Sodium

Renal Diet Nutrient Analysis • Servings per recipe: 2 • Serving size: ½ of recipe

Nutrient Analysis • • • • • • • •

Calories: 340 Protein: 31g Carbohydrates: 6g Fibre: 1g Total Fat: 21g Sodium: 77mg Phosphorus: 251mg Potassium: 420mg

Renal and Diabetic Exchanges 4 protein 1 vegetable

Ingredients

Stay Connected Did you know you can now receive Kidney Living by email? You’ll receive the same great content as the print version and you’ll get it a few days earlier. Receiving this newsletter electronically also assures the Foundation can keep costs low by decreasing printing and postage expenses. To change your subscription to an email version, simply send your name, current mailing address, telephone number and email address to grose@kidney. on.ca. Please put “Change Kidney Living Subscription” in the subject line.

www.kidney.ca/ontario

• • • • • • • •

2 chicken breasts black peppercorns 4 tbsp olive oil 2 tbsp balsamic vinegar ½ tsp thyme 1 cup assorted wild mushrooms ½ cup shallots 4 cups mixed greens (including watercress)

Your Story is Worth Sharing How has kidney disease impacted your life? Share your inspiring story and we may feature it on our website or in Kidney Living.

Directions 1. Season chicken with black pepper and thyme. 2. Drizzle with olive oil. 3. Bake at 350° F, until no longer pink inside. 4. Saute mushrooms and shallots in olive oil. Season with thyme and finish with balsamic vinegar. 5. Slice chicken and serve with warm mushrooms over a bed of greens.

Email us your story in 300 words or less and include a high resolution photo!

communications@kidney.on.ca We are eager to read about you!

O ven Roa sted Ch ic ken a nd Wa r m Mushroom Salad with Watercress , 5.0 out of 5 based on 1 rating.  Summer 2013 / Kidney Living /

EAT TO LIVE

Fast food? Not so fast! Navigating the food court on a sodium-reduced diet by: Heidi Westfield

Five Survival Tips for the Food Court From Registered Dietitian Diane Zianis, Sunnybrook Health Sciences Centre 1. Look for nutritional information online before you dine out, and at the restaurant when you are there. 2. Ask for gravies/sauces on the side and use sparingly. 3. Load up on fresh veggies: try a green salad (with the dressing on the side), or a wrap with lots of fresh vegetables. 4. Look for grilled, broiled or roasted meats instead of deli meats. 5. Ask how rice, noodles and cooked vegetables are seasoned.

“Watching your salt? You may want to avoid this food court favourite.” 18

/ Kidney Living / Summer 2013

Photo credit: BigStock.com/4832002

e know the rule when it comes to reducing salt in our diet; eat at home whenever you can. Sometimes, though, it just isn’t possible. You wake up late, you don’t have time to pack a lunch, and around noon you find yourself, stomach rumbling, in a place guaranteed to make your dietitian shudder—the mall food court. “It is difficult to dine out on a renal diet,” confirms Diane Zianis, Registered Dietitian in the nephrology program at Toronto’s Sunnybrook Health Sciences Centre. “Fast-food options may be high in sodium because foods are often processed, prepared with salt, or have sodium-containing ingredients.” That’s a hard truth for people like me, living with kidney disease, on a sodiumreduced diet. We are only human. It takes a lot of self-control to resist the siren call of cheesy pizza, or lasagna with garlic bread. It’s really tough to keep moving past the burgers and tacos and burritos. For a time, my go-to choice was a Greek fast-food vendor. I would pick out a salad, sometimes with a skewer of chicken, and once in a while, some rice. And I would pat myself on the back, for making a “healthy” choice in the face of so much temptation. Then, the reckoning: I looked up the nutritional numbers for this seemingly harmless meal online. The Greek salad dressing alone had 900 mg of sodium. A dinner plate soared into the sodium stratosphere—past the recommended daily amount for women. This meal wasn’t renal friendly; it was renal diet disaster. Zianis says that when it comes to eating out, looks can be deceiving. “Some foods sound healthy, but we don’t know what kind of marinades and seasonings are being used.” She points out that there are rarely “good” choices at food courts for those watching their sodium. Her advice: try to eat fresh, and stock up on raw vegetables and fruit. On sandwiches, avoid mustard, ketchup, pickles and processed cheese; opt for lettuce, tomato, and onions instead. Choose grilled or roasted meat instead of processed deli slices such as pepperoni or smoked ham. If you are a fan of Italian food, like I am, choose grilled fish, meat, and (skinless) poultry instead of parmigiana dishes. In some restaurants, you can make your own pasta dish; choose pasta tossed with garlic, fresh tomatoes and olive oil. Try adding vegetables such as zucchini, eggplant, onion and peppers. Spice it up with chili flakes instead of salt. A rule of thumb is to look for nutritional information before you go out. If it is not available, ask questions before you buy: How much sodium is in the salad dressing? What is your seasoning made of? What is your lowest-salt option? Avoid foods served in soy, oyster, fish or black bean sauce. Choose steamed rice over fried rice or noodles. And, as much as possible, avoid soups. Just between us (have your dietitian look the other way now) here’s a tip to keep your sodium intake down when you can’t resist the lure of the Golden Arches. Ask for your french fries without salt, and your burger “plain” (without ketchup and pickles.) My son likes it this way too, and we agree that the meal still tastes pretty great! 

www.kidney.ca/ontario

EAT TO LIVE

Inconvenient Truths about Convenience Foods Take a long, hard look at quick and easy foods by Emily Quenneville, Shannon Chesterfield and Lisa Whatley, Registered Dietitians, Hôtel-Dieu Grace Hospital, Windsor

Kidney Community Kitchen Meal Planner Features

Photo credit: BigStock.com/616495

• Set goals for yourself. Our meal planner will help you set your nutritional goals (such as no more than 2000mg of sodium per day) and help you track how you’re doing. • Track your daily intake and how you feel. You will be able to monitor your daily intake of sodium, phosphorus, potassium and protein intake and keep notes about how you’re feeling each day. • Plan your meals. Our easy “drag-and-drop” meal planner can search for recipes by meal type (e.g. lunches) or diet type (e.g. low potassium) • Share your meal plans. If you choose, you can share your meal plans with family and friends or with your renal dietitian.

uggling family, appointments and life can be tough. For those on a renal diet, figuring out what convenience foods are kidney-friendly can make things even harder. Some convenience foods can fit, as was discussed at a recent cooking demo offered by the renal dietitians at Hôtel-Dieu Grace Hospital in Windsor. The following are some key points that were discussed during the session. There’s no easy way to find out if a convenience food is bad when you’re on the renal diet. You often have to be a detective to check to see if a food has any sodium, potassium and phosphorus. We need sodium (salt) in our diets, but we often eat more than we need. Cutting back on sodium can help lower blood pressure and slow down chronic kidney disease (CKD), as well as help reduce any swelling. More food companies are reducing the amount of sodium in their food, but are replacing it with potassium. This is a big deal if you have CKD and need to follow a low potassium diet. Make sure to read the label and ingredient list on lower sodium foods to find out if there’s any hidden potassium. Phosphorus can also be hidden in foods as more companies are using phosphate additives as a preservative. These foods are considered high in phosphorus since these additives are better absorbed by the body compared to naturally occurring phosphorus. Unfortunately, the only way to know if a food has any is to inspect the ingredient list for words similar to phosphorus or phosphate. Some of the kidney-friendly convenience foods sampled during the cooking demonstration included: • No Name® Rice Crisp Crackers & Philadelphia® 95% Fat Free Cream Cheese • Campbell’s® Tuscan Meatball with Farfalle Pasta Soup • VH® Steamers Mango Chicken • Michelina’s® Real Gourmet Chicken Penne Toscana • PC® Blue Menu Dill & Cognac Marinated Atlantic Salmon • Lou’s® Roasted Beef with Gravy • PC® Blue Menu Cauliflower Topped Shepherd’s Pie Some ingredients may have changed since compiling the list; be sure to check the ingredient list for any changes. For more meal ideas, visit the K idne y Com mun it y K itc hen at w w w. kidneycommunitykitchen.ca. 

The Kidney Foundation’s Kidney Community Kitchen www.kidneycommunitykitchen.ca has many resources including an easy-to-use meal planner. www.kidney.ca/ontario

Summer 2013 / Kidney Living /

LIVING WELL

Photo credit: BigStock.com/28905878

Feeling Good, Inside and Out Caring for your skin and hair while on dialysis

ialysis patients may notice changes to their skin including itching, dry skin and hair loss or thinning while on dialysis. The skin may become more fragile, bruising or tearing more easily than normal. You may find that you bruise easily if your dose of blood thinner is too high or you are taking an aspirin a day for good heart health. Itching has many causes, so you will need to be a detective. Often itching is caused by high blood levels of phosphorus. In your body, extra phosphorus can bind with calcium to form sharp, itchy crystals. Controlling your phosphate levels by watching your diet and taking your phosphate binders with food can help. Other causes of itching could include not enough dialysis, or dry skin. Avoid long, hot showers or baths and alcoholbased products which can further dry out the skin. Try a few over-the-counter lotions, to see if one works for you. Some patients find that coconut oil is soothing. Speak to your medical team if you experience itching during dialysis so they can help you make safe changes to prevent reactions. Itching during your treatments is most likely due to an allergy to the tubing, the dialyzer or the type of heparin being used.

/ Kidney Living / Summer 2013

Some renal patients also experience hair loss. Hair is made of protein. If you become malnourished, a few months later your hair may break more easily and fall out. Eating enough good protein will help, but it often takes a few months to see any changes. Your dietitian can advise you about good protein sources that fit with your renal diet. In addition, hair loss can also be caused by zinc deficiency, thyroid problems, reactions to medications, and other problems. Treat your hair gently, avoiding harsh perms or colours. Your stylist may be able to advise you on styles that will help hide

your thinning air. It is always best to speak to your medical team if you have questions. The Kidney Foundation has a fact sheet on the topic of skin and hair problems on dialysis. The fact sheet provides some solutions to common issues together with questions you can ask your doctor. www.kidney. ca/factsheets 

Source: Kidney Foundation Fact Sheet – Skin and Hair Problems on Dialysis & Living With Kidney Disease Patient Manual

Tips for healthy

skin

• Use a room humidifier to keep the air in your home moist. • Use a special soap made for dry or sensitive skin. Avoid long hot baths or showers. • Wear soft cotton fabrics—avoid wool and rough polyesters. • Use as little laundry detergent as possible. • Avoid scented products. Often the chemical that produces the scent can irritate the skin.

www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

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Tournament, Markham Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa Kidney Connect Support Group, Thunder Bay

September

For more details about these events and future happenings in your community, call The Kidney Foundation of Canada office nearest to you (see p. 2), or visit www.kidney.ca/ontario. Visit www.kidney.ca/ontario for the latest event postings.

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July 22

HUB International Golf Classic, LaSalle 26 2013 Kidney Golf Classic, Timmins 26 2nd Annual Ian Hay Memorial Golf Tournament 29 Kidney Connect Support Group, Mississauga

August 14

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Kidney Connect Support Group, Kitchener Roy Anderson Memorial Golf Greenfield Golf Tournament, Aurora Kingston Wedding Show Leonardo Racioppo Golf

Kidney Walks will take place in various communities throughout the month. Visit www.kidneywalk.ca for information. Sex and the City 2, Kitchener Kidney Connect Support Group, Thunder Bay Kidney Connect Support Group Kitchener Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa Kidney Connect Support Group, Mississauga

November 12

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Kidney Connect Support Group, Kitchener Bowl ’13, Vaughan Kidney Connect Support Group, Thunder Bay Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa Kidney Connect Support Group, Mississauga Impressions 2013, Hamilton

December 4

Kidney Connect Support Group, Kitchener Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa

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Kidney Walk, Stratford Lakeridge Health - Kidney Patient and Family Peer Support Coffee Club, Oshawa Kidney Connect Support Group, Thunder Bay Kidney Connect Support Group, Kitchener Bella Notte Gala, Toronto Kidney Car Rally, Point Edward Celebrity Men in a Fashion Event, London Celebrity Men in a Fashion Event, Ottawa

 The Kidney Foundation of Canada thanks you for your support. The personal contact information that we have on file for you is used for the purpose of sending you this publication. From time to time we may use your contact information to keep you informed of other activities, events and/or fundraising opportunities in support of the Foundation. Should you, at any time, wish to be removed from any of these lists, kindly check below and mail this back to The Kidney Foundation of Canada, 1599 Hurontario St., Ste. 201, Mississauga, ON L5G 4S1, or contact us via email at grose@kidney.on.ca. Please allow up to 30 business days to update our records. q Please take my name off the contact list for this newsletter. q I do not want my name to appear on The Kidney Foundation of Canada’s other contact lists. Indicate your name and address as it appears on the mailing label or include the mailing label with your request. _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ _________________________________________________________________________________ If you have any questions or need more information about how the Foundation respects your privacy, email us at privacy@kidney.ca, Attention: Chief Privacy Officer.

www.kidney.ca/ontario

Summer 2013 / Kidney Living /

MEDICAL RESEARCH

Canadian National Transplant Research Program Transplant researchers come together to improve patient health

“Suddenly you begin to see things in a different way.”

/ Kidney Living / Summer 2013

nce upon a time, most Canadians thought of medical research as studious white-coated experts conducting laboratory studies and writing papers for similarly white-coated doctors hoping to improve or at least better manage their patients’ health. But that was then, this is now. The Canadian National Transplant Research Program (CNTRP) is a new initiative uniting more than 100 experts in the fields of solid organ and bone marrow transplantation and donation. Led by renowned pediatric cardiologist, Dr. Lori West, CNTRP includes transplant surgeons, external researchers, clinicians, decision-makers, patient and family representatives, advocacy group members, an ethicist, a knowledge broker and more. The result of a Canadian Institutes of Health Research (CIHR) initiative, CNTRP was conceived to address two pressing Dr. Lori West problems: 1. Too many Canadians on transplant waiting lists are dying before suitable donors can be found. 2. Far too many transplants or grafts ultimately fail. To date, CIHR, its partners including The Kidney Foundation of Canada, and coalition members of CNTRP, have raised $30 million to fund this ambitious program. Says Dr. West, “This global program links the science of solid organ transplantation, bone marrow transplantation and donation together. Donation and transplantation kind of go hand in hand, but bringing in bone marrow cell transplantation adds a different nuance. Suddenly you begin to see things in a different way.” In its quest to advance transplant research to improve patient treatment, the CNTRP has made six key commitments: 1. Increase the number of transplants. 2. Extend the lives of transplant patients. 3. Improve the quality of life of transplant patients. 4. Develop and enhance the pool of talent in the transplant field, including the public. 5. Develop and coordinate a national transplant research program. 6. Enhance transplantation data management platform measures to overcome barriers and evaluate the effectiveness of each measure. If that sounds ambitious, that’s because it is. The program itself is divided into six different projects. Dr. West explains: “The first project has to do with organ repair. Aimed primarily at solid organ donation, it links research in kidney, liver, lung, heart and pancreas transplants and looks at how we can overcome the difficulties of transferring organs from one place to another and maintain their normal physiologic state. “Project 2 looks at donation and the process of organ donation in Canada. Between projects 1 and 2, we hope to increase the number and quality of organs available for transplantation. “Project 3 is dedicated to understanding and preventing the early issues that lead to long-term damage of grafts. Researchers such as Dr. Marie-Josée Hébert, have already www.kidney.ca/ontario

MEDICAL RESEARCH begun to identify the cells or molecules that lead to graft failure. “Project 4 looks at the immune system and examines alternatives to the generalized immune suppression we currently use. “Project 5 studies the viral complications of transplantation that are common after surgery. “And Project 6 addresses issues that children and young adults face regarding immunosuppression and related viral infections, as well as compliance to their medical regimen. “In addition to the six projects, we have three core groups that span and support all the projects. One core studies the ethical, economic, legal and social issues around transplantation . The second looks after data management and consolidation and the third focuses on training for the whole program. “It’s an ambitious program, but the enthusiastic response of the community is what grew it to the size that it is. I think people saw that this could be a better way to do things. A better way to do science.” Dr. Bethany Foster agrees. “A large network with core support is more efficient as it allows us to capitalize on the experience and expertise of different people working on different projects. “For renal patients, it really improves the capacity for them to benefit from a broader perspective of research activities that are being developed in the field of organ donation, organ transplantation and bone marrow transplantation. You actually get a lot more people doing things that are potentially relevant to your condition,” says Dr. Hébert. 

www.kidney.ca/ontario

Summer 2013 / Kidney Living /

FUNDRAISING

Itâ&#x20AC;&#x2122;s on! Claude and Rose have a fight on their hands.

by Olivia Pierratos

/ Kidney Living / Summer 2013

www.kidney.ca/ontario

FUNDRAISING

2013 Walk

o, they’re not fighting each other as it might appear; they are joining forces at this year’s Kidney Walk and together, with their walk team “Go Kidneys,” they’re taking steps to fight kidney disease. “Getting rid of the barriers between healthcare providers and patients.” This is the goal of North Bay dietitian Rose Gelinas. After only a year of involvement with The Kidney Foundation, Rose, with the support of her team, has managed to encourage and increase involvement in the Kidney Walk in North Bay with her competitive spirit and an array of summer initiatives to generate excitement leading up to the Kidney Walk. Rose works at the North Bay Regional Health Centre; her connection to the Foundation begins and ends with her connection to her patients. Last year her team, “Go Kidneys” included 20 staff members, a nephrologist and one patient. This year Rose is passionate about getting her patients involved in the Walk. “Patients often feel unwell and fatigued. The thought of getting out and walking is daunting and they just don’t think to do it.” Talking about the many events in the summer and the Walk breaks the ice, according to Rose, getting rid of any barriers between healthcare professionals and patients - “It’s huge.” “I want the patients to feel like I am their biggest cheerleader. I am on their side and I want the best for them. I want them to see how The Kidney Foundation and promoting organ donation can dramatically impact their lives.” So, Rose and her colleagues found a way to get patients to be enthusiastic about raising money in an initiative now called, Pennies for Kidneys. Last year Rose and dialysis patient Claude Devost had a friendly competition to raise money. Claude, she admits, got a lot of sponsorship; however, she also warns that she can get quite competitive too. The competition was such a success that this year they’re spreading the word hospital wide. Patients and visitors will find water jugs in waiting rooms throughout the renal program, providing an easy opportunity to donate. This quest for sponsorship has been taken hospital wide on the intranet Main Street Blog. The competition also now includes patients who can donate to support either Rose or Claude (who are actually on the same team). While the support will help them reach their individual goals, it is also raising awareness about kidney disease and much-needed funds for The Kidney Foundation. But it doesn’t end there. Another initiative is called the Escape Movement. T-shirts from a local retailer are being sold with a feather symbolizing freedom, or in this case more specifically: Freedom from Kidney Disease. If that wasn’t enough, Rose is also involved in a pie-throwing contest in which patients can buy pies to throw at her and one of the staff nephrologists. If that weren’t enough, the team is also selling silicone wristbands with the tagline, “Taking Steps, Inspiring Hope” locally. In 43 communities this September and early October, Kidney Foundation supporters will join together in parks and on pathways to help create a future without kidney failure. It’s that special time of year when friends and families join together from all walks of life. Patients see they are not alone. Families and friends rally in collective support. Healthcare teams walk alongside their patients. That’s really what Rose’s mission is all about. “Let’s break down all barriers and inspire hope together.” Visit www.kidneywalk.ca to register today. 

Communities • Barrie • Belleville • Brampton • Brantford • Brockville • Caledonia • Chatham • Cornwall • Durham Region • Goderich • Guelph • Halton Region • Hamilton • Hawkesbury • Iroquois Falls • Kapuskasing • Kingston • Kitchener • London • Mississauga • North Bay • Orillia • Ottawa • Owen Sound • Pembroke • Perth • Peterborough • Porcupine • Port Colborne • Renfrew • Sarnia • Sault Ste. Marie • Scarborough • St. Catharines • Stittsville • Stratford • Strathroy • Sudbury • Thunder Bay • Tillsonburg • Toronto • Windsor-Essex County • York Region

www.kidneywalk.ca www.kidney.ca/ontario

Summer 2013 / Kidney Living /

COMMUNITY HIGHLIGHTS

Community Highlights

Former Canadian Olympian Carolyn Waldo; kidney transplant recipient Courtney Doyle; participant Janelle Stansel; Bruce Hill, Kidney Foundation of Canada.

Making a Splash at Splash Bash p More than 80 people were in attendance for the inaugural Splash Bash, a family fun joint venture between The Kidney Foundation of Canada and the Children’s Hospital of Eastern Ontario (CHEO). The premise behind the event was a challenge Courtney made of her nephrologist, Dr. Janusz Feber: a 100-metre swim race—winner takes all. That event was easily won by Courtney, a competitive swimmer who took up the sport after her transplant. Other activities at the Splash Bash included a cannonball competition that had six-year-olds competing against 50-year-olds. A great day was had by all and a bigger event is planned for February 2014. 

Candice Coghlan and dietitian June Martin assemble the turkey sliders.

Sizzlin’ Summer Cooking Demonstration p On June 4, The Kidney Foundation of Canada and Grand River Hospital dietitians, pharmacists and staff collaborated to create a Sizzlin’ Summer renal cooking demo at the Kitchener Market. Patients and family members joined together to watch and learn from Spice it Up Chef Leslie Cairns as she worked her magic on the grill, creating a delicious meal of beef barley salad, turkey sliders, shrimp pesto pizza and a lemon blueberry cake, which was all renal friendly. Patients and family members learned how to create delicious, healthy recipes for their renal diet, teaching us that you don’t need to miss out on tasty foods this summer. Our thanks to Shire Pharmaceuticals who sponsored our evening. Stay tuned for our next adventure in the kitchen. 

/ Kidney Living / Summer 2013

Volunteer Neal Cowan met a new tropical friend Pedro while out canvassing in his Eastern Ontario neighbourhood.

Thank You March Drive Volunteers p Thanks to the tremendous effort of our extraordinary volunteers, we raised $800,000 during Kidney Health Month. Our volunteer force knocked on thousands of doors throughout the month raising funds to support kidney research and programs.  www.kidney.ca/ontario

COMMUNITY HIGHLIGHTS

Anthony Longo (President and CEO) and Joey Longo (COO) were the resident pros in a “Beat the CEO/COO contest on the Masters course.

Lucas Longo and Mitchell Yeatman, two members of our third generation Longo’s sponsors, were also resident pros on the Legends course.

Longo’s Fore Kids Sake Charity Golf Tournament supports Kidney Foundation Camp Programs p Longo’s 24th annual Fore Kids’ Sake Charity Golf Tournament raised $210,000 to benefit local women’s and children’s charities. The tournament held on June 18, saw 476 golfers tee off for a number of charities including The Kidney Foundation. Thank you to Longo’s for your support. 

www.kidney.ca/ontario

Summer 2013 / Kidney Living /

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