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FAQs with answers from the experts

StoryBlocks.com

How do I start the conversation with friends

and family to explain why I need a kidney and how they might help me as a potential donor?

The best way to start the conversation is to be honest about your health situation and tell your story. Start by letting your friends and family know you are living with kidney disease and that your kidneys are failing. Let them know that the best treatment for you to live a healthy life is to receive a living donor kidney transplant. As a potential donor, your friends and family could save your life. Describe to them how living with kidney disease has affected your life, the limitations and struggles you face and how lifechanging a kidney transplant would be for you. Do you want a transplant so that you can watch your grandchildren grow older? Do you want to travel the world? How would a transplant change your life? What are you passionate about that a transplant could give you an opportunity to do? If you have friends and family members who are not eligible to be your donor but would like to help, ask them to be an advocate for you. They could share your story with work colleagues, create a social media campaign, create kidney.ca an awareness campaign with their social clubs and share your story widely to help you find a donor. The Centre for

Living Organ Donation has many resources to help you find a living donor. We host weekly webinars, have first person stories, peer mentors and information on our website livingorgandonation.ca, on our YouTube channel and social media channels. Reach out to us at livingorgandonation@uhn.ca for more information or speak to your transplant coordinator and nephrology team to assist in your journey.

Candice Coghlan

Education & Outreach Coordinator Centre for Living Organ Donation at UHN Ajmera Transplant Centre

Sometimes when I finish dialysis, I feel very weak and lightheaded. Is this normal? What can I do to make dialysis leave me feeling better, not worse?

Post-dialysis fatigue is a common symptom: about one third of patients feel worse in the hours after dialysis. We don’t fully understand why some patients feel weak and fatigued after dialysis, while others do not. We do know, however, that it can be debilitating and associated with depression. Excessive fluid removal may make it worse and physical activity may make it better.

While fatigue is common, lightheadedness (feeling faint or woozy) is not. This could be a sign of low blood pressure or too much fluid removal during your dialysis session. You should mention these symptoms to your nurses and nephrologist. They may want to check your blood pressure during the period of lightheadedness to make sure it’s not dropping. If you have recently gained “good” weight (e.g. fat or muscle), they may increase your target weight. Perhaps the dosing and/or timing of your blood pressure pills needs adjusting. Finally, some patients feel better on more gradual forms of dialysis (e.g. peritoneal Spring 2022 / Kidney Living / 21

[home] dialysis or nocturnal dialysis). Ask your healthcare providers if those are options for you.

You may find that your symptoms are worse on dialysis days when more fluid is removed from your body. If you still make urine, a diuretic may help you eliminate more fluid between dialysis sessions. Minimizing salt intake can help with thirst and keep your fluid gains lower. Your dietician may have other tips to keep fluid gains within target. Dr. Caitlin Hesketh Nephrologist University of Ottawa

I am interested in doing dialysis at home. It would make life so much easier for me and my family. How do I know if I can learn how to do it?

The most important factor is you—your willingness to learn and be involved in your care. It’s important that you are able to hear and see the supplies/dialysis machine. Your dexterity should allow you to button a shirt. There are things to consider for home therapies such as: • Time commitment for training and regular clinic visit.

Frequency of clinic visits are based on each patient.

For stable patients it is every two months. • Responsibility of setting up, monitoring and cleaning

up of equipment/dialysis machine.

• Space for supplies/ dialysis machine/water treatment. Ordering and monitoring dialysis supplies.

Reliable sewer/septic system. • Telephone for emergencies Home teams are available by phone/pager for medical /technical questions during on-call hours.

Training schedules are based on your needs, until you feel confident and comfortable, usually 1-6 weeks, 3-5 days weekly, depending on modality choice. Pam Cerqueira RN, C Neph (C) Home Dialysis Coordinator Grand River Hospital The answer is “not necessarily.” You may have to provide your employer with information if you are applying for EI sick leave or short-term disability payments which require medical documentation about the nature of your disease and treatment. Your employer has the right to information to verify the legitimacy of your absence, understand your prognosis and safely return you to the workplace. Employers, however, are typically not entitled to know your diagnosis or the specifics of your illness. It is recommended that at some point you discuss with your employer the limitations of what you can do based on your disease and treatment.

There is a provision called “Duty to Accommodate” for employers which means that if an employee has or develops a condition that prevents them from doing regular job duties, then the employer must try and modify work conditions as much as they can to ensure that you can keep working safely. Some patients, depending on the type of work they do, must consider options such as a reduction in hours, changes in positions or retirement due to disability. If you are starting a new job and if you are honest about your ability to perform the duties of the job in a safe, effective manner, you do not need to advise them of your medical situation. Employers cannot ask about any disabilities, but they can ask if there is anything that would prevent you from doing the job. It may prove to be to your benefit to advise a new employer at some point that you are on dialysis and may on occasion need to attend to your medical needs. Talk to the renal social worker at your unit about your employment and possible income options if continuing to work becomes difficult or unsafe. Michelle DiNardo MSW BSW RSW Renal Social Worker, Regional Renal Program Windsor Regional Hospital 

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