IN-CENTRE HEMODIALYSIS PROGRAM NEWSLETTER For our patients, families, and caregivers SUMMER 2018 Edition
From the Medical Director s Desk: Dr. Lok A few newsletters ago, I introduced Dr. Lok s Top 10 Tips to help you stay well on dialysis. I indicated that with each new newsletter, I would add a little blurb to better explain a new tip. Here s a bit on Tip #3: Dr. Lok s TOP 10 tips to help you stay well as a dialysis patient 1. Stay positive and go with the flow Smile it will help keep you and others warm! 2. Be around supportive family and friends keep in contact 3. Don t miss your dialysis treatments and stay for the prescribed length of time Admit it. You have probably thought about it yes, about missing dialysis today. How many times have you said to yourself, "I am so tired, I don t want to go to dialysis today." or "I feel too sick or I just need to take a day off. Even if you think about it, please don t do it. You may get away with skipping a few sessions, or even shortening them, for a while, but your body will catch up with you. When you skip or shorten your dialysis time, you end up getting inadequate dialysis or lowered delivered dialysis dose. This has been found to increase morbidity (e.g., higher blood pressure) and mortality. Skipping one or more dialysis sessions per month has been associated with 25% - 30% higher risk of death! Did you know that shortening dialysis for more than 10 minutes, 3 or more times per month has been associated with an increase risk of death? It may not seem like a big deal to skip a few minutes here or there, but it all adds up and can be very dangerous for you. Why do people miss dialysis? A study of >180,000 dialysis patients in the USA found the following common reasons: Special occasions (e.g., birthday, Valentine s day, graduation etc.). Weather conditions (e.g., Heavy snowfall on day of dialysis) Symptoms and/or psychosocial emotional factors - GI upset including nausea, vomiting and diarrhea were the most common, followed by drug and alcohol use, depression and chronic pain. Transportation to/from dialysis (e.g., public transport, driving). Obligations (work, child care, appointments) 1
Not seeing dialysis as a priority Not understanding the consequences of missing or shortening dialysis treatments. What can you do? Educate and get support from your family, friends and supporters around special occasions so they can work around your dialysis schedule or have the healthcare team reschedule your dialysis time. Weather conditions are tough to get around, but we all understand everyone is in the same situation so the dialysis unit will help make modifications to the schedule as necessary. When you are feeling unwell and have symptoms that is when you really should come for your treatment your nurse can call your doctor or the doctor on call to come see you to see if we can help you feel better. Obligations and transportation are often logistically difficult to negotiate let us know and we can see if our social worker has insights or suggestions to help. Please know that dialysis IS a priority dialysis cleans your body s toxins, helps get rid of excess fluids, helps you stay well - and alive! Here are the other tips that we ll talk about in future newsletters: 4. Be mindful of what you eat and stay properly nourished Especially avoid foods high in potassium 5. Be mindful of what you drink The less weight gained between dialysis usually means the less extra fluid you need removed and that s better for you and your heart 6. Get regular physical exercise and stay fit It s good for your heart, muscles and bones 7. Be involved in your care know your blood pressure and your bloodwork 8. Take care of your vascular access It s your lifeline 9. Regularly re-evaluate your goals This includes your personal, professional and dialysis goals 10. Get to know the healthcare team and other people on dialysis We re your dialysis family. The healthcare team is here to support you. Until next time, Happy Summer! Dr. Lok 2
Patient Family & Supporter Advisory Committee (PFSAC) The Patient, Family and Supporter Advisory Committee (PFSAC) continue to meet on the third Wednesdays and Thursdays every other month. We want to say a BIG thank you to those who completed the patient survey. Two (2) patients and one (1) family member met with the team to analyze the surveys. The suggestions were divided into two categories, namely (a) Treatment and (b) Equipment. We are now in the process of asking patients to select one priority item from each category after which, we will work in subcommittee to create strategies. Our next PFSAC meeting will be held on July 18 th & 19 th 2018 between 12:00-1pm. We invite you to join us and share your ideas. If you have any questions or would like to share your comments, you can contact Alicia Jones (Patient Care Coordinator) at alicia.jones@uhn.ca or 416-340-4800 ext. 8502 or Melissa Rubin (Social Worker) at melissa.rubin@uhn.ca or 416-340-4800 ext. 6047. Pharmacy Update: What Do I Do For My Itch? Itch, sometimes called pruritus in medical-speak, is common in patients undergoing hemodialysis. It can be related to limited fluid intake, a buildup of phosphorous, and inflammation. Some people on hemodialysis may feel itchy only in one area, while others may feel itchy all over. Some useful tips include keeping your skin clean and moist, avoiding things that can irritate your skin, and using creams and lotions that hydrate your skin. See below for some suggestions on creams and lotions that you can buy at your local pharmacy. Specific recommendations include: - Using a gentle soap/cleanser, such as Spectro Jel or Cetaphil - Avoid using excessive laundry detergent - Using a fan at night - Using a humidifier - Avoid hot water while bathing (lukewarm water is better) - Avoid bathing too often or for too long - Wear light clothing to keep cool - Try not to wear wool or other irritating fabrics 3
- Use cotton bed sheets - Trim your fingernails There are also a number of creams and lotions that can help relieve your itch. It is important to apply these products after bathing, and can be used up to 6 times per day. Creams are generally better for very dry skin. Lotions are better for itchy skin that is not as dry. INCREASING COST Product name: Cost: Vaseline (great for very dry $5-$10 skin) Udderly Smooth Cream $5-$10 Complex 15 Lotion $5-$10 Aveeno Cream or Lotion $10-$15 Glaxal Base Cream or Lotion $10-$15 Curel Lotion $10-$15 Eucerin Lotion $10-$15 Dermal Therapy Lotion $10-$15 Lac Hydrin Lotion $10-$15 Dormer 211 Cream or Lotion $15+ CeraVe Cream or Lotion $15+ If you find that these options are not helping with your itch then please talk to your pharmacist and doctor about prescription cream options. TRAVELING ON DIALYSIS With the summer quickly approaching, many patients are interested in going on vacation. Traveling while on dialysis is possible, all it takes is a little research on your part to find the best dialysis centre for you! If you are interested in traveling and have access to the internet, you can search for dialysis centres available throughout the world on www.globaldialysis.com. If you need help finding a dialysis centre, be sure to speak to your social worker. Once you find the dialysis centre where you want to receive treatment, you will need to contact this unit to make sure they have space available for when you want to travel. OHIP will reimburse you a maximum of $210 per treatment, so it is important to find out how much the dialysis centre charges for dialysis, since you may have to pay out of 4
pocket for some of the treatment. The dialysis centre will then send a checklist of all the documents they need from your chart in preparation for your treatments. It is your responsibility to get this information back to the dialysis centre before you go on vacation. When you are getting your dialysis treatments at another centre, it is important to get receipts for each treatment and if possible, have all of the information you get be in English, so you do not have to get it translated. When you return from your vacation, you need to fill out the OHIP Claim Form in order to be reimbursed for a maximum of $210 per treatment. You will send in all of your original dialysis receipts with this claim form. It may be possible to be reimbursed for other treatments you receive while on vacation, so be sure to keep all of your receipts. If you need financial assistance to cover the cost of your dialysis treatments while you are travelling out of the country, you can apply to The Kidney Foundation of Canada s Travel Loan program, which assists hemodialysis patients with the cost of arranging out of country dialysis treatments. Patients can apply for a maximum loan of $ 210 per treatment and for up to the cost of 6 treatments. This travel loan is subject to availability and approval, and needs to be repaid to The Kidney Foundation. An application package should be sent to The Kidney Foundation at least five weeks prior to the departure. Be sure to speak to your social worker about traveling while on dialysis to get help throughout the whole process. TIPS FOR STAYING HYDRATED WHILE CONTROLLING FLUID INTAKE AND THIRST The weather is warming up with the arrival of spring and summer around the corner! As the temperatures rise, so can your thirst. It is important to know how to quench your thirst and stay hydrated without overloading on fluid. Overloading on fluid can lead to breathing problems, high blood pressure, extra work for the heart, and swelling (edema). Fluids are anything that is liquid at room temperature. This includes water, juice, milk, coffee, tea, soup, ice cubes, ice cream, Boost or Ensure ). Here are some simple tips to stay hydrated while controlling your fluid intake and thirst: 5
Controlling thirst 1. Use less salt and avoid salty and/or processed foods. 2. Brush your teeth often. 3. Rinse your mouth with mouthwash or cold water. Do not swallow! 4. Moisten your mouth with: a. A lemon wedge b. Hard sour candies c. Chewing gum d. Breath mints or breath spray 5. Eat frozen fruit such as grapes or strawberries. Controlling fluid intake 1. Slowly sip fluids from small glasses or cups. 2. Plan ahead! Plan your fluids intake for the whole day. 3. Drink your fluids very cold or very hot. 4. Suck on ice cubes: 1 cup of ice = ½ cup water and it lasts longer. 5. Swallow medications with meals or soft food like applesauce, if able. Having trouble? Ask your renal dietitian for more tips on managing your thirst! ADVANCE CARE PLANNING Our staff will be speaking to you about advanced care planning in the hemodialysis program as it is now mandated by Ontario Renal Network that every patient have advance care planning and goals of care documented in their charts. Advance Care Planning (ACP) is the process of a capable patient taking steps to ensure that their wishes guide their treatment and care in the event that they become incapable and/or unable to communicate these preferences in the future. It focuses on expressing your values and wishes, thinking about what s right for you, learning about end of life care options and deciding who will make healthcare decisions on your behalf if you are unable to do so. More education will circulate in the unit for your information. 6
PROGRAM PRACTICES Please remember that you must bring your Health Cards with you every time you come for dialysis treatment. This is mandatory instruction from the Ministry of Health. After you show your Health card to the ward clerk, a bracelet with your name will be placed on your wrist and you will wait in the lobby until you are asked to enter the unit. Please remember this is done for your safety. The number 1, 2 or 3 will be placed on your bracelet to tell you what order the nurses will call the patients in the unit (this applies only to the first shift patients). For safety reasons, please do not draw the curtain around your station or cover your head while you are receiving your treatment. If the nurses are unable to see you, they will not be able to help you should you need it. It is acceptable to draw the curtains when you are going on and off the machines. If you need to see the doctor while you are having your treatment, please tell your nurse and the reason you want to see the doctor. This will improve communication and ensure you receive the care you might need. HAND HYGIENE We urge all of you to wash your hands before entering and leaving the dialysis units. Hand hygiene is a general term referring to any action of hand cleaning. A good hand hygiene program includes hand washing to kill germs from the hands while keeping the good skin integrity. Even with healthcare workers washing their hands, the spreading of germs continues to be a problem. This is why we need you ALL to help by washing your hands as you enter and leave the dialysis units. 7