Kidney Living - Fall 2022

KIDNEYLiving

Kidney Health and Body Image

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 president@acka.ca

Brant County 1-800-387-4474 brant.president@kidney.ca

Central Ontario 1-800-387-4474 • 905-278-3003 daniela.piotrowski@kidney.ca

Chinese Renal Association 1-800-387-4474 shukyu.fong@kidney.ca

Durham Region 1-800-387-4474 Eastern Ontario 1-800-387-4474 •613-724-9953 jennifer.heale@kidney.ca

Hamilton & District 1-800-387-4474 deanna.kulczycky@kidney.ca

Kingston 1-800-387-4474 • 613-542-2121 sarah.jensen@kidney.ca

London & District 1-800-387-4474 • 519-950-5362 carl.cadogan@kidney.ca

Niagara & District 1-800-387-4474 deanna.kulczycky@kidney.ca North Bay 1-800-387-4474

Northern Superior 807-624-2680 ontario@kidney.ca Sarnia-Lambton 519-344-3462 corinne.isaacs@kidney.ca

Sault Ste. Marie 705-949-0400 tannis.mcmillan@kidney.ca

Timmins-Porcupine 1-800-387-4474 • 705-365-7492 timmins.president@kidney.ca

Waterloo – Wellington & District 226-338-6961 leigh-anne.quinn@kidney.ca

Windsor & District 519-977-9211 shannon.vanwatteghem@kidney.ca

Looking Forward

The Kidney Foundation continues to ramp up its effort to reach more Canadians affected by kidney disease and provide information, edu cation and support in meaningful ways to help each step of the way. Webinars have been an effective way to bring together expertise, patient perspectives and create an open dialogue on topics of importance to our com munity. A series of webinars in 2022 on body image and chronic kidney disease were well received by participants. In this issue of Kidney Living, we’re delving deeper to share more information on this important topic. Check out the Q&A with Renal Social Worker, Jose Medeiros on page 13. Patient partners, Dan and Kristin also tell their personal stories to share their lived experience. Your medical team, including your renal social worker, can be important resources in discussing issues related to body positivity and self-esteem. Our Peer Sup port volunteers are also here to support you, to answer your questions and share their experience.

For those of you ready to hit the open road, we’ve gathered a series of articles with tips and advice on traveling while living with kidney disease, including tips for understanding travel insurance, understanding how to process claims for out-of-country hemodialysis treatments and travel insurance.

I would be remiss if I did not acknowledge and include a special thank you to Donna Lee and Gustavo Pancorvo from GEPM Group. I have worked with this incredible duo for close to 15 years bringing this publication to you. From editing the stories, designing to printing, they have been an integral part of this journey from its inception. While this issue will be their last as they head into a much-deserved retirement, the show will go on and you can expect Kidney Living in your mailbox again in the Spring of 2023.

Trish

Reynolds, Editor 

Travel and Dialysis

Tips from Fellow Travelers

by Paul St. Germain

The key to traveling safely while on dialysis is to plan well in advance of your trip.

Many people who receive a kidney failure diagnosis assume that vacation and travel will be impossible for them be cause of their dialysis treatments. Thankfully, that simply isn’t so. In fact, it’s possible to visit exotic and faraway countries, go on a cruise, take a road trip to see family and friends, or choose almost any other travel option that was available prior to the diagnosis. It just takes a bit of planning. The first step is to check with your doctor to make sure you are in stable health. Then you can proceed to make the necessary arrangements.

Traveling on peritoneal dialysis is relatively easy. That’s one of the convenient things about this form of dialysis. Exchanges can be performed almost anywhere that is clean. Your renal team can share information about the delivery options to have your supplies sent to your destination, and let you know if there are any additional charges for shipping.

Although there are more hemodialysis units available for visitors to virtually every popular tourist destination worldwide than ever before, most units run on tight schedules with limited space. To ensure you get on their schedule, make your arrangements four to six months ahead. Try to plan your vacation around the fewest number of dialysis units as possible so the arrangements will be easier to make. Your home dialysis unit may provide some advice about booking your dialysis appointments while away, but it’s up to you to actually make them.

With experience comes confidence. Eve, a seasoned traveler who has been dialyzing for two years, puts it this way: “In order to travel, I opted for home hemodialysis a year ago. This forced me to acquire more knowledge and to get out of my comfort zone, but now I am completely autonomous. This gives me far greater confidence while traveling, because I have all the necessary knowledge to do my own treatments.”

A few companies offer cruises especially for people on hemodialysis. They have fully equipped hemodialysis units on board, staffed with qualified medical and nursing personnel. Even though these cruises are usually expensive, they offer a unique chance to travel. The point of departure is usually an American city, although many Alaskan cruises leave from Vancouver. Cruises are also available in the Mediterranean, Baltic Sea, Southeast Asia and other areas.

Mike is an avid cruise vacation enthusiast who has been on 23 cruises so far and is currently preparing his fourth since beginning dialysis. He notes that it’s also possible to schedule your treatments while

visiting ports of call, assuming they are frequent enough to meet your dialysis needs. “I’ve looked at dialysis at sea and it seems very interesting,” says Mike, “but I prefer to do dialysis at the ports of call. This way I get to get off the ship and do a little sightseeing, even if it’s in the taxi to and from the hospitals.”

With a clear picture of where you want to go and what you want to do on your next trip, you’re now ready to start planning it.

Start planning early Scheduling your dialysis appoint ments is very important. In order to avoid any unpleasant surprises, it’s best to start making your dialysis appointments as far ahead of time as possible. “I start preparing about three to four months beforehand,” says cruise aficionado Mike. “This is what I’ve always done even before becoming a dialysis patient.” The ca veat, however, is that you may need to devote more time to the planning process.

Finding dialysis units at your destination

Mike also recommends taking the time to research carefully. “I use the internet extensively to find hospitals with a hemodialysis unit. I call them and have a pleasant chat with the nurse in charge. In some provinces I have to contact the health authority instead and then write a nice letter or fax requesting treatment and specify ing the date and times I will be in a particular city.”

For Canadian destinations, trav elers can get a directory of dialysis centres that accept visitors online at the Canadian Institute for Health Information (CIHI) and search for dialysis centres which accept visitors. Your local renal units and Kidney Foundation can also provide directo ries listing hemodialysis units virtually anywhere you want to go around the world.

Reflecting on how she prepared for her last trip abroad, experienced international traveler Eve says she did some considerable research online, on sites such as booknowmed.com and traveldialysisreview.com. “I con tacted centres by email. Be patient because the replies can take a long time to come.”

She admits that at first she was a bit reticent about visiting unfamiliar dialysis centres. “It’s very impor tant to me that the hemodialysis machines and methods used are as hygienic as they are here,” she con tinues. “However, I’m increasingly reassured. I believe that the majority of methods are similar all over the world, especially in large cities. There are some places that recycle filters, which isn’t done here. In those cases, you can carry some with you in your carry-on luggage.”

Involve your healthcare team in your planning

Your doctor or members of your healthcare team should be involved in your preparations before finalizing any travel arrangements. Both your home dialysis unit and the unit you will be visiting need to do a lot of work to help you have your vacation. Mike explains: “The centre to which I want to travel faxes a ‘travel package’ to my home centre usually requesting a recent chest x-ray, an electrocardio gram, the results of my most recent blood tests, and an MRSA nose swab test and another swab test to test for things like c-difficile. They also require a letter from a nephrologist with a brief summary of my condi tion.”

Medications and supplies

Make sure you have enough medica tions with you for the length of the trip (plus some extra in case there are travel delays). Be sure to carry a list of your medications with you. If you will be going through customs, it’s also a good idea, to carry a letter from

your doctor stating you need to travel with these medications (and syringes, if you use them). Keep medications in their original containers or boxes with the pharmacy label so that se curity personnel can verify what is in the containers. Carry all medications with you just in case your luggage is misplaced or delayed.

More tips for visiting other hemodialysis clinics

A few days before your departure, confirm your hemodialysis schedule. Contact each unit again a day or two before your first appointment with them and give them a phone num ber where you can be reached, in case they need to reschedule your treatment.

Dialysis centres are often very busy places. Show them respect and courtesy. Be sure to arrive on time to avoid delays that will affect the people who dialyze there regularly.

Mike, who has received dialysis treatments in eight different centres while traveling over the last two and a half years, suggests going even further: “Write a thank you note to the nurse and staff of that centre to express your appreciation (or send a gift like an edible fruit arrangement after the treatment).”

Taking a trip while on dialysis may take a bit more preparation work, but what you get in return is price less. “My advice is don’t be scared to travel,” offers Mike to anyone who might feel overwhelmed about going on a trip for the first time since starting dialysis. “It’s the feeling of freedom that I can see the world and continue living a full life that makes it desirable.”

Note: Suggestions made in this article may not be suitable for everyone. Please consult your doctor or members of your healthcare team before planning your travel. 

Ticket to Ride

by Trish Reynolds

Starting January 1, 2020, reimbursements for hemodialysis treatments re ceived outside of Canada are processed through a new system managed by the Ontario Renal Network and funded by the Ministry of Health. Ontario residents with a valid Ontario health card can travel outside of Canada and receive up to $210 CDN for hemodialysis treatments received out of the country.

Upon return to Canada, travelers will submit their application to the On tario Renal Network with their original receipts in English, stating the dates of treatments, the cost of treatments in the currency paid and a letter from the treatment centre indicating that the account is “Paid in Full.”

If you receive a travel loan from The Kidney Foundation, you can designate reimbursement of the loan back to The Kidney Foundation.

Assistance to make travel a reality for individuals requiring hemodialysis

The Kidney Foundation’s Travel Loan program is designed to help make travel more convenient and affordable for Ontarians on dialysis. Individuals who require dialysis cannot ignore their regular dialysis schedule even when trav eling on vacation or business. The Travel Loan program is designed to assist hemodialysis patients with the upfront costs of out-of-country dialysis treat ments. Upon return, the patient must submit all required documentation to Ontario Health/Ontario Renal Network and re-direct the reimbursement (the amount of the loan) back to The Kidney Foundation. The interest-free loans must be repaid upon the patient’s return.

Applications for travel loans are made through renal social workers at com munity units, hospital renal programs or kidney care clinics. Applicants must meet eligibility requirements and the total funds available for this program are limited. Potential applicants can apply to receive a maximum of six hemo dialysis treatments at a maximum of $210 per treatment to help pay for the upfront treatment costs. 

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Peace of Mind

Travel Insurance 101

by Asha Smith

When you are traveling with a chronic health condition like kidney disease, there are extra steps you should keep in mind while planning to have a safe and happy vacation. Understanding travel insurance and the coverage of your policy is a first step. Visit kidney.ca/webinars to watch the September 21, 2022, Travel Insurance Webinar with Rohit Sharma.

1Know the difference between medical travel insurance and health insurance

While you may have health insurance already provided to you through your workplace, if you suffer a medical emergency while you’re on your trip, your health insur ance policy may not cover the cost of the treatment and services you receive. Travel Insurance is a supplemental policy designed to protect you from certain risks and financial losses that can occur when traveling. (Examples include trip cancellation/interruption insurance; luggage loss or medical insurance). Travel medical insurance cov ers many emergencies, but it is not meant to be used for preventative treatment or regular medical care.

2Check if the travel insurance policy is right for you (read the conditions)

When choosing travel insurance, it’s important to review and understand the coverage offered. Not all travel insur ance policies offer the same coverage, so make sure that the policy you are looking at works for you. Read what each travel insurance policy offers you and choose the one that best suits your needs.

3You must disclose your pre-existing condition(s) when purchasing travel insurance

While disclosing your pre-existing conditions may result in denial of certain coverages, or an increase in cost, it is important to disclose this information. Having kidney dis ease is something that must be declared as a pre-existing condition. If you do not disclose it, your coverage may be cancelled, resulting in the need to pay hospital and medi cal expenses out of pocket. There are some companies that may still offer a person with a pre-existing condition a policy, but it might exclude that specific condition, but cover other medical issues and events.

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4Understand your travel insurance policy

Look at the terms and conditions prior to purchasing the insurance policy. It’s important to understand how your insurance functions in case you need to use it. Look for the “stability period” (or time your health and treatment have remained unchanged), the deductibles, and the re imbursement process to ensure that the policy works for you. Make sure you keep your insurance policy contact information handy.

5Recognize that COVID-19 insurance coverage is a separate cost (supplemental coverage)

COVID-19 is still a public health challenge, and you may wish to inquire about supplemental insurance to keep yourself protected. COVID Insurance benefits help in the event that you are unexpectedly required to self-isolate or

quarantine. The coverage will pay for hotel and meals to a certain limit. Family coverage options are available as well.

6Have fun

You’re on vacation! While you do need to take precau tions, the goal is to enjoy your trip. So, whether you are taking a cruise or exploring Europe, enjoy yourself, plan and prepare for the unexpected and of course have fun! 

Active Living for Life

Active Living for Life is generously supported by the Kazman Foundation in partnership with William Osler Health, Sheridan College and The Kidney Foundation.

Traveling on Dialysis

Pack these tips when planning to travel while on hemodialysis

It is possible to travel while on dialysis, but it does take a lot of planning and preparation. Give yourself at least three months of planning to en sure that your medical team has enough time to prepare and that you have enough time to plan in case you require updated medical information.

STEP 1. If you are on hemodialysis, search for dialysis centres at your travel destination

If you are traveling in Canada or the United States but are not sure where to start looking for dialysis centres, you can search online. Traveling in Canada? Look to the Canadian Institute for Health Information (CIHI) for a directory of Canadian dialysis centres accepting patients. If you are looking to travel in the United States, visit dialysisfinder.com. If you are traveling to any other destina tion, you can do an internet search, but you must contact the clinic to verify that they are still accepting dialysis patients.

STEP 2. Contact the centre(s)

Once you have found a dialysis centre at your travel destination, you and your family are responsible to contact the centre(s). Ask the centre(s) these ques tions:

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• Can you provide hemodialysis treatments on the dates I wish to travel?

• What is the cost per treatment?

• Do you have a medical package to provide to my hospital?

• Are you responsible to pay for the costs per treatment up front?

STEP 3. Confirm your selection with the dialysis centre at your destination and your care team at home.

Confirm with the accepting dialysis centre you have chosen, that you agree to their terms, conditions and cost per each dialysis treatment. Once you have confirmed this, contact your own dialysis centre to tell them the name of the accepting dialysis unit and the dates you plan to travel at least three months in advance.

STEP 4. Complete your medical exams

After you give your dialysis centre the information on your travel destination and the name of the accepting dialysis centre, your renal team will advise you if there are any medical tests that need to be completed prior to your departure.

STEP 5.

Buy your plane ticket

If your nephrologist and renal team confirm that you are medically stable to travel, your nephrologist team will give you your Medical Confirmation. You are now ready to buy your plane ticket.

STEP 6. Update all of your prescriptions

The week before your departure, ensure that all your prescriptions are up to date. If you plan to take any injectable medicines such as EPO/Aranesp or insulin, on the plane, you may be required to bring with you a medical letter to board the airplane and clear through customs.

Your hospital or centre may provide you with a medical package, usually on your last dialysis treatment date before your departure. If you are given this, you should take the package with you to the visiting dialysis centre while on vacation. Your nephrology team may have already sent it on your behalf. This is a “just in case” measure for additional support.

For individuals on peritoneal dialysis, you will still want to speak to your renal team to ensure that you are clear to travel. Your medical team will be able to advise if there are any shipping costs and delivery options to have your supplies sent to your travel destination. Happy travels! 

Stay connected

Our e-newsletters help you stay connected with what is happen ing in the kidney community. Receive expert insights and health information, plus discover new ways to get involved by learning what is being done to raise awareness and help reduce the burden of kidney disease.

Sign up today at https://kidney.ca/Newsletters or email ontario@kidney.ca.

The Kidney Foundation of Canada, Ontario Branch 2022 - 2023 Board of Directors

Dr. Norman Muirhead, President

Richard Bernreiter

Mauro Burri

Charles Cook

Chris Costanza

Elizabeth Giacinti

Joanne Hagger-Perritt

Alan Hui

Craig Kerr, Past President

Sarangan Lingham

Roger Ma

Marlene Rees-Newton

Teresa Roberts Mary-Pat Shaw Marlene Smith

Executive Director Anthony Tirone Ontario Branch

1599 Hurontario St. Suite 201 Mississauga, ON L5G 4S1 1-800-387-4474 905-278-3003

A Family Affair

Life doesn’t stop because of dialysis

by Trish Reynolds

Shortly after the birth of her second child, June began feeling run down. As her physician and other specialists searched for clues, it was through one of the many tests and a visit to a nephrologist that she learned that she had a form of kidney disease called IgA Nephropathy. The diagnosis came out of the blue.

June was shocked to learn that dialysis would become her real ity, sooner rather than later. As the need for dialysis became imminent, she reached out to her local Kidney Foundation with a request to be connected to people on dialysis or living with a transplant. Her goal was to learn as much as possible about the po tential treatment options. Those conversations were critical in June’s decision to do peritoneal dialysis. “I remember one of the volunteers who was so honest and would answer anything I asked,” said June. She vowed that if a formal peer support program ever started in her area, she would be that same source of support to others; willing to be honest and answer any questions, no matter how difficult.

The support of June’s family has been pivotal and has helped her stay grounded throughout her 33-year journey with kidney disease. “When I was first diagnosed, I had young kids and my husband did a lot of traveling as he climbed the corporate ladder. I did my treatments

and just continued to live my life. I realized that I couldn’t stop my life because of dialysis.” Kidney disease is a part of June’s life, but she does her best not to keep it at the forefront. “Things happen, there are bumps along the way all the time, and you just learn to deal with them. We’re [people living with kidney disease] pretty resilient.”

Six months after starting dialysis, June received the call for a kidney transplant. The new kidney made it possible for the family to travel, watch their children grow, and move south of the border for a period of time. “People have this misconcep tion that if you have a transplant, life goes back to normal. You are not doing dialysis, but you’re on some heavy-duty medications that come with their own side effects.”

In 2013, June’s kidney began to fail. She returned to peritoneal dialysis for almost eight years and she is now on home hemodialysis. June has spent almost a decade back on the wait list for a new kidney.

June joined her local PFAC (Patient and Family Advisory Council) and became involved with The Kidney Foundation’s peer support program. While she is thankful for her amazing support system: husband, children, grandchildren, and numerous sib lings, she has realized through her connections with others, that not everyone is so lucky. “I really recom mend peer support for people who are feeling alone, and don’t have anyone to talk to. Starting dialysis isn’t easy and it’s natural for people to worry, but I really try to tell the people that I talk to, to take it all in stride, because you can handle it.”

Being a peer support volunteer has helped June gain a new perspec tive and become more empathetic. “It has really opened my eyes to see that a lot of patients are alone, and many are struggling.”

Kidney disease has no doubt had a lasting impact on June and her family,

but the Jones family endeavours to now make a positive impact on the future of kidney disease research.

The Jones Family Foundation re cently made a transformative gift to support The Ottawa Hospital, with $5 million of that gift earmarked for kidney research. Research has the potential to change lives through early detection, better treatment options and ultimately a cure. “We

are hopeful that this gift will make a difference in the lives of people living with kidney disease. We may never see the full impact of the research, but it is our hope that our children and grandchildren will.” 

• FREE! Facilitated by volunteers who have lived experience with kidney disease.

• Group support meetings are held virtually; join the one that fits your schedule.

• Patients, family members and caregivers are welcome.

• One-on-one

Mirror, Mirror...

Body image, self-esteem, and chronic kidney disease

by Jose Medeiros, edited by Erika Muscat

This year, The Kidney Foundation held three webinars on the topic of body image, self-esteem and chronic kidney disease. Renal Social Worker, Jose Medeiros moderated one of the sessions on men’s health. After the event, he sat down with us for a Q&A to discuss ways to break down barriers and encourage conversation about body image and self-esteem. You can access the webinar recordings on demand at kidney.ca/webinars.

Why does body image matter?

Body image matters because it is connected to an individual’s self-perception and self-esteem. If a person has a negative view of themselves and their body, it means that potentially all aspects of their life can be negatively affected. A positive body image and self-esteem is critical to maintaining a person’s physical, psychological, emotional, sexual, social, physical and spiritual health.

What do CKD patients face differently than others?

I would say that different chronic diseases can impact individuals in similar ways, in terms of weight, appetite and energy fluctuations, diet restrictions, as well as visible body changes due to surgical scars. Specifically, CKD patients must cope with body changes pre-dialysis, on dialysis and post-transplant. During pre-dialysis, they deal with uremic symptoms (changes in how they produce urine) that can result in changes to their skin colour/texture, weight gain/loss, and a metallic taste/breath smell like ammonia. On dialysis, some of these symptoms do improve, although weight and appetite can continue to fluctuate. Following a renal diet is an ongoing challenge that patients need support with throughout each phase of care. In addition, hemodialysis patients

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must adjust to body changes resulting from the creation of vascular access (a fistula, graft or a temporary central venous catheter (CVC line) to start hemodialysis). CVC lines are clearly visible on a person’s neck and require special care to prevent infection. A fistula is easier to care for, but in terms of body image, it can lead to a person feeling self-conscious. The fistula can appear bumpy or enlarged. Transplant recipients may experience side effects related to anti-rejection medications, such as “a moon face” or appetite and weight gain due to medications, such as prednisone.

Are there different concerns that men and women face and if so, what are they?

The body image concerns are more similar than they are different, al though there can be gender-based differences. In addition to those changes already mentioned, kidney failure can also affect sexual desire and performance for both men and women. Chronic kidney disease and its treatments can also have an impact on the menstrual cycle of women. Menstruation can become irregular for some, or even stop altogether for others. Women of child-bearing age need support ad dressing their family planning goals and making an informed decision about having children or not. Both genders can experience unwanted hair growth due to medications posttransplant.

What is the most common body image-related worry you hear from patients, and what type of support or resources do you direct them to?

It tends to depend on the patient’s age, relationship status, treatment choices, health status and other chronic health problems. I find that younger single patients, or patients who are in relatively new romantic relationships, or are separated/di vorced and interested in dating, seem

to focus on physical appearance is sues, or on their fear of rejection due to weight gain/loss. They may also have concerns about how others will react to their PD (Peritoneal Dialysis) catheter, bumpy fistula or CVC line. Older patients are also concerned about these issues, but they seem to focus more on appetite and en ergy fluctuations. The middle-aged and older adults on dialysis often express that they may physically and functionally appear older than their peers, suddenly requiring mobility aids to get around, or become less able to go out into the community alone. Some may need assistance with personal care or day-to-day support. I am thrilled that The Kidney Foundation is producing the body image and self-esteem webinars for men and women. I hope these types of webinars continue to be held go ing forward at regular intervals and that new ones are developed target ing specific age groups with unique needs.

What can people do to help themselves cope?

It is common for people living with a chronic illness to initially withdraw from their family, friends or spouses/ partners when they start experienc ing body image issues related to chronic kidney disease. It is impor tant for patients to give themselves permission to grieve their real or perceived losses. It is hard to move forward without first emotionally and spiritually acknowledging what is happening to you and the ripple effect that CKD is having on a person’s life. It is equally important to also give yourself permission to reach out and ask for assistance/support in dealing with body image issues. I strongly recommend The Kidney Foundation webinars on this issue and its Peer Support program. Connecting with someone who has a shared lived ex perience and understands what you are going through can be very help ful. I encourage patients to consider

individual/couples counselling if they have the means. Their care team can assist them in searching online for ap propriate counselling services with a sliding scale for payment. Moreover, if a patient has a family physician, I suggest that the patient consult them about it and request a psychiatric referral, as lack of body positivity can have a negative impact on mood.

As a caregiver/friend/family member, what should you say/ not say to loved ones who are struggling with their body image because of their kidney disease?

It is not productive to comment on a person’s obvious weight gain/loss. This issue is already raised every time the person attends kidney clinic appointments or dialysis. It is more helpful to wait for the person to com ment on their concerns. It is helpful to ask open ended, non-judgmental questions, such as, “do you think talking to your dietitian might help?

If you want, I would be happy to be present to support you.” It is not easy, but active listening and simply being emotionally present is very important to patients; it enables them to feel safe and comfortable sharing their concerns with friends, family and professionals alike.

As a caregiver/friend/family member, what can you do to help a loved one cope with their kidney disease and the issues they face?

Patients often comment on how much they appreciate a ride to a clinic/dialysis and to have a support person attend clinics with them to act as a sounding board afterwards. The support person can also help to raise issues that the patient wanted to address but forgot or find difficult to ask. Having a support person attend a clinic is helpful for patients to feel that their family member and close friends understand what is going on without having to explain how their chronic disease is progressing.

What type of support and advice can you share with other renal professionals on how they can address questions or concerns around body image with patients going forward?

Patients are often overwhelmed with managing their chronic kidney disease. Some are self-managing and taking control of CKD. They educate themselves, reach out for peer sup port, read material provided by The Kidney Foundation and establish a partnership with their nephrology team. Others, for a variety of reasons, are not so proactive. As nephrology professionals, we have the duty to identify and assess the needs of our most vulnerable patients. We need to find appropriate strategies/resources

to engage them and their support network, and to ensure that the pa tient does not feel alone. Lack of body positivity and healthy self-esteem can lead to an increased risk of social isolation, fluctuations in mood and the onset of depression.

Renal professionals also need to understand the social context of a patient’s life—what their hopes, dreams and goals are—to know how to support them in their life journey while they also deal with their chronic kidney disease. Personally, just when I think I have a good grasp of body image and the impact on my renal patients, I meet a new patient with a new, unique set of concerns. Learning is an ongoing goal for patients, their families and renal professionals. It

is important for professionals to be transparent with patients regarding their knowledge and comfort level with body image. They can reassure patients that it takes personal cour age to raise these issues and they can reaffirm their professional com mitment through active listening and support. Don’t be afraid to say to a patient, “I don’t know the answer to that question, but I will consult with my team members and get back to you.”

I find that if patients are ap proached without judgment and are provided a private and safe environ ment to talk, they are easily engaged and relieved to have the opportunity to speak up about their body image and self-esteem. 

Radiothon

Raising funds and awareness

by Trish Reynolds

The Kidney Foundation’s Chinese Renal Association held its second Radiothon on Sing Tao A1 Chinese Radio on Thursday, September 15. The all-day event invited listeners to hear personal stories from people who live with and are affected by kidney disease as well as physicians, allied health professionals and volunteers throughout the day while raising funds to support crucial programs and services such as short term financial assistance.

“The radiothon was an important opportunity to share kidney health in formation with our Chinese community,” said Alan Hui, Chair of The Chinese Renal Association. “After months of planning, we were so thrilled to raise over $145,000, surpassing all of our goals,” added Hui.

The Chinese Renal Association is a volunteer-led local Chinese Chapter started by patients and nurses who felt that education, information and sup port needed to be more readily available to Chinese-speaking communities. Their many years of work resulted in the wealth of information and resources to support Chinese Canadians who are affected by kidney disease.

We would like to express our thanks to the many sponsors and donors who helped make this event such a success: AMGEN, Scarborough Nephrology Associates, Canada Ginger Candies, Lebovic Golf Club, Michael LeungRight at Home Realty, Immi Realty Inc. Integrated Network Solutions, York Physiotherapy, iTalkBB, Ontario Print Factory, Café Hollywood, Greenfield Golf and the East Asian Internal Sup port Network – Toronto Police Service. Thank you to the many speakers who shared their expertise and personal journey with kidney disease and to the many volunteers for their time and dedication in organizing the event. 

Drama in real life

by Erika Muscat

Dan was in his early 20s when he learned he had kidney disease, but it wasn’t until 2018 when his side started hurting badly, that he went to a walk-in clinic. His blood pressure was double what it should have been, and he was immediately sent to the hospital for further assessment.

Dan was referred to a nephrologist. He changed his diet drastically and was able to maintain some of his kidney function. Even though Dan was not a big guy to begin with, he lost a lot of weight in the process. After about a year and a half, his kidney function began to decline even more, and he was starting to feel unwell again. He felt weak and didn’t have a lot of energy. It was a challenging time.

As a movie director, Dan was in the midst of filming a major film when his kidney function started to decline. He didn’t want people to know what he was going through. “I didn’t want it [kidney disease] to be a factor in how people treated me,” he said. “I didn’t want to look weak, and I didn’t want to look sick. That was hard.” Yet, Dan did feel very weak and tired. He felt that he wasn’t keeping up with others his age, or even younger. His legs would get swollen and painful. Dan would sometimes feel short of breath, dizzy and have heart palpitations. The challenges weren’t just physical. There was also the mental health side of things. Some days, when he woke up, he didn’t have the confi dence that he would make it through the day.

However, under close supervision and with advice from his medical team, Dan continued to push through. As it turned out, none of his co-workers even noticed the things that he feared were so obvious to everyone.

Fortunately, many of his friends had come forward to be potential kidney donors, and one was a great candidate. Dan was able to evade dialysis and in November 2020, he received a kidney through the paired exchange program. A kidney transplant though, comes with its own set of challenges. Dan was able to gain weight, but it took time to strike the right balance.

Dan’s close friends knew what he was going through. He says, “It’s so im portant to be open with your friends.” Dan also shares how important it is to listen to your body. “Everyone is different, and you need to be patient with your body; understand that there will likely be setbacks along the way.”

Dan found a community of support in The Kidney Foundation’s Peer Support program. He was able to talk to other men his age who had gone through a similar experience. Recently, he participated as a panelist in the Foundation’s Body Image webinar for men. (recording available at www.kidney.ca/webinars).

Post-transplant, Dan is thriving. He feels good and is happy to do what he can to help others navigating this journey, so they do not feel alone. 

Supplied photo

Lily and Kristin

Never give up

by Erika Muscat

Lily was just seven years old when she started to get very sick. For three months, she suffered with migraines, stomach aches, urinary tract infections, random vomiting and more. Eventually, she was so sick that she was barely able to function. Further tests determined that Lily’s kidneys weren’t functioning properly.

The doctors prescribed Lily with a six-week course of steroids. Unfortu nately, there was no change. Next a biopsy was performed and Lily was then diagnosed with a form of kidney disease called Focal segmental glomerulosclerosis (FSGS), which is rare in children.

Lily spent 120 days in the hospital, navigating her way back to health in her kidney disease journey. She has faced many challenges that are not only unique to her, but to any child with a chronic illness. For example, Lily had a catheter inserted in her chest for hemodialysis access. She once had a nasogastric (NG) tube, and now, post-transplant, still has a gastrostomy (G) tube. She has struggled with moon face due to the prednisone, and with weight gain and loss, due to the fluid fluctuations inherent to her disease.

“At the age of seven, Lily asked me what she could do to lose weight,” ex plained Kristin, Lily’s mom. Kristin sat down with her and had to explain there was nothing she could do, and that it was a part of her disease. Luckily, Lily seemed to understand. Kristin has, on more than one occasion, spoken to Lily’s class to explain Lily’s condition and talk about her hemo line.

Now, in Grade 6, Lily is post-transplant, and she controls what she can. She chooses her clothes, does her makeup and dyes her hair. She doesn’t let kidney disease define who she is. Lily has been extremely fortunate to have a core group of friends who have fully supported her along the way. In fact, a group of 25 of them come out every year to support Lily in the Kidney Walk.

Lily was also fortunate enough to attend Camp Kivita this summer—a camp for kids who live with organ transplants and organ failure. “She loved camp,” said Kristin. Even though Lily could only attend camp for three days because she got sick, she went back at the end of the week to say goodbye to her new camp friends.

Kristin now helps lead the Kidney Connect Peer Support group for ‘Paediatric Caregivers.’ She says that the positive outcomes of Lily’s kidney disease are that Lily is very independent, and more importantly, the entire family feels the love and support from their close friends. They’re grateful for the new friendships they’ve made through The Kidney Foundation. Her message to other families going through a similar journey? “Reach out for help. Don’t give up. It can take time to find the right help, but it’s worth it in the end.” 

Photos courtesy Kristin Cuttress

Webinars

The Kidney Foundation con tinues to expand the reach of its support and education resources through online learning opportunities. From virtual symposia and forums to webinars and guest speakers participating in peer sup port meetings, The Kidney Foundation brings experts to the table to discuss issues of importance to patients and their families.

“Working with experts in the field, we have covered a variety of topics. Patients and caregivers have been in strumental in guiding decisions about the subject matter. They ensure that the topics are relevant and timely,”

said Craig Lindsay, Senior Manager, Programs & Public Policy. “We have always been fortunate to have patient partners co-design and execute the sessions to ensure that there is a per sonal and lived experience perspec tive,” he added.

Feedback from participants has been overwhelmingly positive. Deliv ering the sessions online ensures that these opportunities are accessible to everyone and helps reach the largest possible audience. Recordings of the sessions are posted to The Kidney Foundation’s website, kidney.ca, after each event and are available to view on-demand. Some sessions are avail

able in French, and there are also some resources available in Mandarin.

Earlier this year, The Chinese Renal Association hosted sessions on the Cardio-Renal Connection and Healthy Eating.

The topics covered in 2022 ranged from COVID-19: Navigating the New Normal, to Financial Planning, Travel Insurance and a three-part series on Body Image and Self Esteem. Record ings from the National Patient Forum and the Ontario Kidney Month Patient Symposium are also available online.

Occasionally, The Kidney Founda tion’s Peer Support Group meetings, now virtual, include an educational component. Guest speakers join a portion of the meeting to share in formation on a variety of topics of interest to the group. For example, the Paediatric Caregivers group recently invited a pharmacist to their meeting to discuss medications in the paedi atric care setting. The Living with Re duced Kidney Function group invited a nurse to speak about diabetes and kidney disease. These session record ings are not posted online to protect the privacy of the attendees. Stay up to date on future guest speakers and other programs and events at kidney. ca/events.

Access the complete roster of webi nars at kidney.ca/webinars. 

StoryBlocks.com

Let the Good Times Roll

Baking tips tor a healthy and happy holiday season

by Dani Renouf, RD, MSc and Mikaela Kroeker, Student and Jennifer Snyder, Student

The holiday season can often pose a challenge for many of us, given our health goals and needs. Many factors are at play, including difficulty controlling portions at a buffet dinner, lack of availability of healthy foods at parties, and a sense of feeling overwhelmed about how to make healthier substitutions to those beloved family recipes.

The happy news is: yes, you can bake. By following these practical tips, you can ensure that your holiday treats will be a success among family and friends, while feeling confident that the food choices you make are also benefiting your health. It’s a whole new way of looking at holiday treats.

Start with the essentials

Most recipes call for baking powder, which contains sodium and phos phorus. To help limit the use of these ingredients, prepare your own phosphorus-free baking powder by mixing the following ingredients together:

4 Tablespoons cream of tartar

2 Tablespoons baking soda

Mix these ingredients together and use 1 Tablespoon of the mix ture in place of 1 Tablespoon commercial baking powder. Store the remainder in an airtight jar for up to one month.

Although cream of tartar is a source of potassium, it is diluted greatly in a baking recipe, so baking with it will not significantly contribute to potassium intake if used in small quantities, such as a tablespoon.

Unsplash/KariShea

Switch it up

The best part about baking is that you have leeway to make creative substitutions. Try these easy switch-ups for kidney-friendly and delicious treats.

• Instead of… Mashed bananas (high in po tassium), Try…Unsweetened apple sauce

• Instead of …White sugar (raises blood sugar), Try… Cinnamon or pureed pears

• Instead of…Dried fruit (high in sugar and potassium), Try… Chopped pineapple

• Instead of… Salt, Try…Holiday flavours such as rosemary, thyme, nutmeg, cinnamon, cardamom and sage

• Instead of… Butter or hydrogenated veg etable fat, Try… Plain non-fat yogurt and vegetable oil

Freeze

Even though baked goods can be made with nutritious ingredients, they are still a source of added calories. Try baking in smaller batches, freezing leftovers for another special occasion to help manage portions through the festive season a little more effectively.

Try this great recipe for shortbread from Kidney Community Kitchen as part of your holiday baking. 

Shortbread Cookie Bars

1 cup butter, room temperature ¾ cup sifted icing sugar 1 teaspoon vanilla extract 2 cups sifted all-purpose flour ½ cup finely chopped dried cranberries

Heat oven to 3250F with the rack in the centre. Combine butter, con fectioners’ sugar, vanilla and flour in a large mixing bowl. Beat with a wooden spoon until combined but not too creamy. Stir in dried cran berries. Pat dough evenly into an 8" or 9" square baking pan. Bake until just beginning to turn golden, about 20 minutes. Place pan on cooling rack until cool enough to touch, about 20 minutes. Run knife around edges, remove shortbread and transfer, right side up, to work surface. Use a sharp paring knife to cut into bars. Optional: Try using 1 tablespoon grated orange zest instead of the vanilla for orange cranberry bars.

Cranberry

Kidney Car: a driving force

Donors now benefit from a minimum $700 tax receipt

Through thick and thin, Kidney Car has weathered the test of time, raising critical funds to support Canadians affected by kidney disease. As year end approaches, now is the perfect time to donate an unwanted vehicle and benefit from a 2022 tax receipt that is now a mini mum of $700.

Donors like Janice laud the program for its ease and simplicity. “It was a fantastic experience, from making the contact to arranging a date and time for pick up to the actual pick up. Everyone I had contact with was so friendly and proud to be associated with the program.”

Kidney Car is widely considered the most trusted name in car donation, having handled hundreds of thou sands of vehicle donations in Canada.

“We aim to make the process as easy as possible” said David Cybulski, Man aging Director of Kidney Car.

Cars can be donated online at kidneycar.ca or by calling toll-free 1.866.788.2277. Kidney Car provides free towing available within 48hrs and donors receive a charitable tax re ceipt for their donation—a minimum value of $700. Newer models, in road worthy condition may qualify for a significantly larger tax receipt.

Canadians donate their vehicles for a variety of reasons. For some, their car no longer runs and is taking up precious space in the driveway. “Some donors have shared that their second vehicle is no longer needed, while others want to bypass the challenge of selling an older vehicle privately or are tired shelling out countless dollars

on repairs,” shared David.

Donated vehicles are either re cycled or sold, and the proceeds are invested back into activities to help provide support to Canadians affected by kidney disease. The funds help power kidney research and provide support to those affected through programs and services to help ease the burden of kidney disease.

“It’s a win-win for The Kidney Foun dation and for the donors,” said David. “Kidney Car takes care of everything, and donors are confident that their car donation’s value has been maximized to support Canadian kidney patients when they need it the most.”

To learn more, call 1.866.788.2277 or contact kidneycar.ca

*Some geographic limitations apply. 

Photos.com

Stronger Together

Ontario Kidney Walk Raises over $715,000

by Trish Reynolds

The kidney community stepped up across Ontario on September 25 for The Kidney Foundation’s signature event—the Kidney Walk. Participants raised more than $715,000 to invest in highcalibre research and crucial support programs to help ease the burden of kidney disease.

“We are truly overwhelmed by the amazing support of our kidney walkers and their many donors,” said Anthony Tirone, Executive Director of The Kidney Foundation’s Ontario Branch. “The walk is the highlight of year for many of us, and while we couldn’t gather in person again this year, we witnessed the strength and resilience of our kidney community. It was truly inspiring to see so many families, friends and partners in renal care show their commitment and support for their loved ones and support the work of the Foundation,” he added.

Walk teams were encouraged to gather in smaller groups and walk in their communities wearing their Kidney Walk T-shirts with pride. One hundred and sixty walkers reached Champion status, each raising over $1,000.

The walks would not be pos sible without the commitment and dedication of our kidney community. Thank you to national partner Otsuka Canada Pharmaceutical Inc., national supporter Horizon, provincial spon sor Janssen Pharmaceuticals, pro vincial supporter Werger Realty Ltd. and provincial media sponsor YESTV as well as the many community spon sors who supported this initiative. 

We’re Here to Help

1.800.387.4474

Programs & Services

• Have questions? We can provide information and resources to help.

• Learn about emergency short-term financial assistance, travel loans, camp support.

• Talk to someone who understands. KIDNEY CONNECT Peer Support is offered by phone, online or at a support group.

Photo Credit: iStock.com/DisobeyArt