Transplant Digest newsletter - Spring/Summer 2021 (issue 30) by St. Michael's Hospital

Transplant Digest SPRING/SUMMER 2021 ISSUE NO. 30

COVID-19 Vaccines and the Canadian Landscape Dr. Jeff Zaltzman

At the time of writing, approximately 50% of Canadians received at least one dose of a Health Canada-approved vaccine, and 3% received a second dose. Product monographs for the two mRNA vaccines, Pfizer-BioNTech, and Moderna, recommend a second dose at 21 and 28 days respectively. The recommended second dose for the virus vector vaccine by Astra Zeneca is between 10-12 weeks following the first. The other approved virus vector vaccine by Johnson and Johnson requires only a single dose. What have we done in Canada with respect to vaccine rollouts? Owing to world-wide demand and supply limitations, Canada had a slow and tumultuous vaccine procurement early on. None of the COVID-19 vaccines are manufactured in Canada, Continued on page 2

In this issue... • COVID-19 Vaccines and the Canadian Landscape • Understanding if COVID-19 Vaccines are Effective • Preparing for your Virtual Clinic Visit • Your Lab Requisition • Having a baby after a kidney transplant • How much water should you drink each day? • Iron Deficiency after Transplant • My CPAP Journey • Post Transplant Chat : Knowing your medication • Adjusting Transplant Research Participation to Pandemic Limitations • Writing to your donor family TRANSPLANT DIGEST - PG 1

From the Editor’s Desk Dr. Ramesh Prasad

Welcome to the Spring 2021 issue of Transplant Digest. It is our hope that this publication is a useful source of reliable information that is both interesting and comprehensive. To help reduce our carbon print on the environment, we are now printing fewer issues on paper than ever before. The current issue as well as past issues should be available through the Unity Health website. If you have any difficulty finding them, then please let us know. For now, a few paper copies should always be around in the Transplant Clinic. A special thanks goes out to Astellas Pharma Canada, who provided an unrestricted educational grant to support Transplant Digest. As one might expect, this issue contains substantial COVID-19 related content. We have two (yes, two!) articles on COVID-19 vaccination, a COVID word search, articles on how to prepare for your virtual clinic visit, and research during a pandemic. Non-COVID-19 articles include lab requisitions, pregnancy, iron deficiency, water intake, medications, sleep apnea, writing a letter to your donor, and knowing your medications. Our motto is to provide “something for everyone”. Have a pleasant spring and summer, and before we meet again get yourself vaccinated, and take care.

COVID-19 Vaccines story continued from page 1

so we rely on vaccine importation. So Canada implemented a strategy of trying to administer as many first doses as possible and delay the second dose to 16 weeks for Moderna and PfizerBioNTech. Is this a bad thing? There are some real world data including Canadian data about delaying the second dose, which although not ideal, suggests this strategy will likely save lives overall when there is not enough vaccine. 1. The UK has been using Astra Zeneca and Pfizer-BioNTech. At the time of this writing only a small percentage of the population have received a second dose. The COVID infection rate decreased from 60,000 to less than 3000 per day. The country has opened up. 2. In Israel, where the population majority received 2 doses of Pfizer/BioNTech, infections dropped dramatically even after the first dose. PG 2 - TRANSPLANT DIGEST

Contact Information Dr. Ramesh Prasad – Editor Meriam Jayoma-Austria- Newsletter Coordinator Please send your comments or suggestions of topics for future publication to: Meriam.Jayoma@unityhealth.to St. Michael’s Hospital Kidney Transplant Program (across the hospital) 61 Queen Street East, 9th Floor Toronto, Ontario, M5C 2T2 Phone: 416-865-3665 Disclaimer Note:

Views presented in this newsletter are those of the writers and do not necessarily reflect those of St. Michael’s Hospital or the University of Toronto. Subject matter should not be construed as specific medical advice and may not be relevant. For all questions related to your health please contact your health care provider.

3. In the USA about 60% have received one dose of vaccine but only ~ 30% the second dose. Infections have decreased from over 200, 000 to 40,000 per day. 4. Canadian data as of May 3, 2021 shows that only 1.3 % of Canadians who received a single dose of vaccine got COVID. Recent BC data shows that this may be even less than 0.5%. What are the concerns with delaying the second dose? We understand that most vaccines that require two doses to give the most protection do need a time interval between doses. The 21 and 28-day interval for the Pfizer-BioNTech and Moderna vaccine was chosen to demonstrate efficacy in as quick a time as possible to get their approval. Astra Zeneca suggests that waiting to 10-12 weeks provides a better immune response compared to sooner. Emerging data overall suggests that waiting longer between vaccine doses may actually confer a better immune response. This was recently reported in a cohort of elderly UK patients. What about transplant recipients? Data for Pfizer-BioNtech and Moderna suggest that transplant patients do not respond as well to a single dose compared to the non-transplant population. The Ontario Government made an exception for solid organ transplant recipients, bone marrow transplant and some other cancer patients on chemotherapy, allowing them to receive the second dose based on product monograph. Of note, most provinces have not made this exception. Do vaccines work in transplant patients? The short answer is yes. However, since the immune response is reduced in transplant patients taking anti-rejection medications, it is likely that the vaccines will be less effective. Some protection is better than no protection at all. That is why it remains a strong recommendation for transplant patients to get vaccinated. Transplant patients may require additional vaccinations to achieve a better response, but this remains to be determined.

Summary 1. We have had a slow Canadian vaccine rollout, which unfortunately could not stop the 3rd COVID wave. However, in recent weeks vaccine supply has increased, and by the end of May 2021, 70% of Canadians can expect to have received at least one dose. 2. We have had to ration vaccine dosing to try and vaccinate as many Canadians as possible with a least one dose. This strategy is of greatest benefit to the population as a whole to reduce infections. However, transplant recipients should not be made to wait. 3. The vaccines work even against variants of concern as shown in the UK and Israel where the majority of infections since November 2020 were these variants. 4. We will need 70-75% of the eligible Canadian population to be fully vaccinated to get the desired herd immunity. 5. What is unknown is how long immunity lasts. Will we require annual booster COVID vaccines to deal with either waning immunity or new virus variants? 6. Finally, a comment about the efficacy and safety of the Astra Zeneca vaccine. This vaccine is very effective at reducing the serious risks of COVID, however the risk of thrombosis (blood clots) is real at ~ 1/60,0000 with the first dose. If you did receive a first dose of Astra Zeneca without any serious issues, then the event rate for clotting with a second dose is much lower at ~ 1/500,000. TRANSPLANT DIGEST - PG 3

Understanding if COVID-19 Vaccines are Effective Dr. Darren Yuen

COVID-19 has had a devastating effect since it emerged in late 2019. Although thankfully most of our kidney transplant patients have remained safe throughout the pandemic, we know that people on anti-rejection drugs are at higher risk for severe COVID-19 infection. Although the rollout of SARS-CoV2 vaccines has begun to lower rates of severe COVID-19 infection, we are still learning how effective these vaccines will be in transplant patients. As Dr. Zaltzman mentions in another article in this issue of Transplant Digest, it is clear that vaccination against COVID-19 is a very important thing for all transplant recipients to get, if possible. The Ontario government has prioritized vaccination of transplant patients, so that all of the individuals followed in our clinic are entitled to book a vaccine right now. Given that transplant patients are at higher risk for severe COVID-19 infection, any protection offered by vaccines is better than nothing. To better understand how effective these vaccines will be in our transplant population, the St. Michael’s Hospital Kidney Transplant Program PG 4 - TRANSPLANT DIGEST

will be tracking who has received their vaccines, and the rates of COVID-19 infection. We will also be monitoring for side effects of the vaccines. Therefore, please contact our office and let us know: 1. When you have received your vaccine doses, and if you have any side effects that you think might be related to the vaccine. 2. If you choose not to get vaccinated, why (so we can understand why and help answer any questions you might have). 3. If and when you have been diagnosed with COVID-19, and if so, if you were hospitalized, needed to be admitted to the ICU, and/or needed to be put on a ventilator. With the third wave upon us, our clinic staff are extremely busy, so we may not be able to answer every call. Please feel free to leave a message with the above details. We will try to answer any questions you might have. As always, if you are experiencing any symptoms possibly due to COVID-19, please get a test. In the event of an emergency, please call 911 or go to your nearest Emergency Department.

Preparing for your Virtual Clinic Visit Dr. Ramesh Prasad

In this COVID-19 era, many patient visits are taking place virtually because of hospital restrictions and in the interest of overall safety. Virtual visits are quite different from in-person visits. Many virtual visits are conducted by telephone, but some also occur through the internet using platforms like Zoom. At the moment, about 80% of post-transplant clinic visits are being conducted virtually. Here are some tips to enable you to get the most out of your virtual clinic visit. 1. Be ready: Remember that the virtual clinic visit is still a formal clinic visit. The visit takes place during regular clinic hours, and is scheduled in advance like a regular visit. There are no virtual walk-ins. Know your time and block off this time in your schedule. Give us the best number to reach you, and at least one alternate. It is not appropriate to be driving, operating machinery, or otherwise actively engaged in work activity during the clinic visit. 2. Gather your information: These include your list of medications, those for which you need prescriptions, vaccination history, weight, blood pressure and pulse rate. Note down any symptoms you would like to discuss. Keep some paper and a pen handy. Keep your weight scale and BP monitor nearby for repeat measurements if needed. Do your bloodwork in advance, and if you can, look up or print out the test results. Know how you can focus the discussion by keeping your questions handy. 3. Be patient: Virtual clinics are busy. We will do our best to speak to you at the designated time, but there may be unavoidable delays. Check your voicemail to see if you missed our call so you can free up your line. Most likely we will try to call at least once more.

4. Be available for two phone calls, one from the nurse and one from the doctor. If you are on a speaker phone, please let us know. Even if much of the conversation is with a caregiver, we must speak to the patient also because this is a clinic visit! 5. After the visit: Be prepared for an in-person visit later, if we are unable to assess you properly over the telephone. Remember, you can’t be examined, so the information we have is limited. If your condition is serious, you may even be asked to go to the emergency room. We may decide to consult another specialist, so remember to follow-up on that appointment. 6. Follow-up: Your lab requisitions will typically be sent by email or snail mail, so make sure your addresses are correct. We may send your prescriptions directly to the pharmacy, so make sure that information is kept upto-date as well. If you have changed family doctors, let us know so we send a letter to the correct person. 7. As always, please call us if you have any questions. Together, we will survive the pandemic, and hopefully the way we provide your health care will return to normal once again. TRANSPLANT DIGEST - PG 5

Your Lab Requisition, an Important Document! Your laboratory requisition is a very important document. A laboratory will not perform any blood or urine tests for you without this document. The requisition also has to be current (i.e., not expired). It is your responsibility to ensure that you have a current requisition to take with you to the lab. The requisition will have the name and address of the ordering doctor, names of doctors who should receive result copies, and any special instructions like fax numbers. The test names will usually be checked off through boxes, but sometimes the names of special tests are typed or written as well. Requisitions can either be picked up from the Transplant Clinic front desk, or they can be mailed or emailed to you with permission. It is important to remember that you may be carrying multiple requisitions, either from the Transplant Clinic or from other clinics or doctors. Some requisitions carry the whole set of routine tests, while others may be for just a few special tests. Please do not mix them up, but feel free to combine requisitions from one or more clinics to take to the lab if the timing works out. Finally, it is particularly important to keep track of which calcineurin-inhibitor, cyclosporine (Neoral®) or tacrolimus (Advagraf®, Prograf®, Envarsus®) you are taking, or if you are taking sirolimus (Rapamune®). Please ensure that the correct generic (not brand) drug name is listed on your requisition.

Having a baby after a kidney transplant Galo Meliton, RN, C Neph (C) Senior Chief News Correspondent

It is possible for a woman to conceive after she has had a successful kidney transplant. In fact, we have had several women in our postkidney transplant program who have had several healthy children. There are generally no restrictions for men to father children after a kidney transplant. In truth, their ability to father children would be much better due to better kidney function versus if they were on dialysis. Please discuss with us in clinic if you are considering in vitro fertilization (IVF), so we can refer you to the right personnel. Children born after a successful kidney transplant are generally bigger and thrive better versus those born while mother is on dialysis. There are however, some important things to consider before one plans to conceive. PG 6 - TRANSPLANT DIGEST

Please inform the transplant clinic if you are planning to start a family. We generally say that women should wait one year after the transplant Jenna Milnes, kidney transplant before getting recipient, and her baby bonding pregnant. We at home may need to switch some of your medications to others as some medications you’re on may not be good for the baby. We would also want to refer you to an obstetrician who specializes in high- risk pregnancies. Be prepared to be seen more frequently during the pregnancy as we need to monitor your drug levels, blood pressure, and other important issues. Most importantly, once the baby is born, ENJOY EVERY MOMENT as they grow up very fast!!!

How much water should you drink each day? Dr. Ramesh Prasad

How much water should I drink every day? This is one of the most common questions asked in the Transplant Clinic. Unfortunately, there is no simple, straightforward answer. Remember that patients with kidney disease have difficulty regulating their water balance, and so the answer can quickly become complicated. About 50 to 70% of our body is water. Clean, fresh water is essential for our survival. Water allows us to maintain our body temperature by producing sweat, and to get rid of waste products through the urine. We need to produce at least 800-1000 ml urine daily to eliminate our waste. Blood flows through our body to deliver oxygen and nutrition because of its water content. A lack of water can make a person very sick, very quickly. This is called dehydration. Lack of water can lead to dehydration — a condition that occurs when you don't have enough water in your body to carry out normal functions. Even mild dehydration can drain your energy and make you tired. One common recommendation is that an adequate daily fluid intake is about 15.5 cups (3.7 liters) of fluids a day for men and about 11.5 cups (2.7 liters) of fluids a day for women, including fluids from water, other beverages and food. About 20% of daily fluid intake usually comes from food and the rest comes from drinks. Common drinks like tea and coffee, and pop drinks have a lot of water in them. Some fruits and vegetables are almost entirely water. Our body also produces some “metabolic” water as a byproduct from food combustion. People often say that we should drink eight glasses of water a day. That number is easy to remember, and should be okay if your kidney transplant is working normally. It could be more or less than that, however. Most people are guided simply by their thirst. If you are exercising vigorously, you should drink more than usual before, during, and after a workout. Same thing

on an especially hot day. If you have a fever, vomiting or diarrhea, consult with your doctor about your fluid intake, and what type of fluid you should be drinking, because water needs to be balanced with salt. More fluid is needed typically when there is an infection, or if you are pregnant or breastfeeding. You are probably drinking enough water if you rarely feel thirsty, and your urine is colorless or light yellow in color. The Transplant Clinic can sometimes suspect you are dehydrated or overhydrated from your blood tests, especially the serum sodium level. Remember, if you have leg swelling it does NOT mean you have extra water in your body, but extra salt. Drinking more water will not increase your swelling if you can limit your salt intake. Your doctor or dietitian can help you determine the amount of water that's right for you every day. TRANSPLANT DIGEST - PG 7

Iron Deficiency after Transplant Francine Kwee BScH, BScPhm, ACPR

Why is iron important? Iron is a mineral needed to make blood cells. If the body does not have enough iron, it will lead to anemia. Anemia is a condition where you do not have enough red blood cells and as a result, your blood cannot carry enough oxygen throughout your body.

How common is iron deficiency after transplant? Iron deficiency is common after kidney transplant. This may be due to a number of factors such as blood loss after surgery, medications, inflammation, and frequent blood sampling. Iron usage is also increased due to a renewed ability of the kidney to make a hormone important for making red blood cells, called erythropoietin (EPO). Females of reproductive age often also have a return of their menstrual cycle, which is another cause of blood loss.

How do I know if I have iron deficiency? You need enough iron to keep a healthy hemoglobin level. Hemoglobin is the protein that carries oxygen around in your body. We can measure your hemoglobin levels with your blood work. Two other important blood tests to tell if you have enough iron are transferrin saturation (TSAT) and ferritin. If these test results are low, you may need extra iron.

How will I feel if my iron level is low? Mild iron deficiency often is not noticeable. When it gets more severe, it can cause: • • • • • •

Tiredness Shortness of breath during activity Chest pain Dizziness or light-headness Numbness or coldness in your hands and feet An increased heart rate

Where can I get iron and how much do I need? Iron is found in a wide variety of foods. You can also get iron from supplements taken by mouth or by an injection. Foods that contain iron include red meat, beans and green vegetables. We commonly prescribe an iron supplement after transplant called ferrous fumarate (Palafer ®, Eurofer ®) that is taken by mouth. There are many forms of iron supplements that have varying amounts of iron content. Although more expensive forms of iron supplements are available, they are generally not thought to be much better for treating low iron levels. In severe cases of iron deficiency, or when oral iron is not tolerated, iron may be given by an injection.

What are common side effects from iron supplements? Common side effects include: • • • • •

Constipation Dark stools Stomach pain Nausea Diarrhea

All good oral iron preparations will cause stools to appear black. This is normal and does not mean there is blood loss.

Can I take my iron supplement with food and other medications? Iron is best taken on an empty stomach. If it causes stomach pain, it may be taken with food. Keep in mind that taking it with food can reduce how well the body can absorb the iron and it may take longer to increase your iron levels. Milk, calcium, tea, or coffee can also affect the absorption of iron. Iron supplements can affect or be affected by other medicines you may be taking. This can include calcium, antacids and certain antibiotics. Your pharmacist can help determine if you should space the iron supplement from the other medications you are taking. If you are unsure, space the iron supplement from all other medications by at least 2 hours.

My CPAP Journey-From Restless to Restful By Kevin Bradley, RN

I also had a demanding job with shift work so I attributed my constant fatigue to this. A few years later I was being woken up at night by my sleep partner because of my loud snoring. I was eventually sent to the spare room where the loud and erratic snore could still be heard from down the hall.

Sleep is an important part of your daily routine – you spend about one third of your time doing it. Quality sleep and getting enough of it at the right times is as essential to survival as food and water. People think that when we sleep our bodies shut down but we are actually going into a repair mode. Sleep affects every type of tissue and system in the body from the brain, heart, liver kidneys and lungs to metabolism, immune function, mood, and disease resistance. Research continues to show that chronic lack of sleep or getting poor quality sleep increases the risk of developing high blood pressure, cardiovascular disease, diabetes, depression and obesity. When I look back I now realize that having obstructive sleep apnea (OSA) was evident a few years prior to seeking out a solution. There were the nights when I would be conscious of the fact that I didn’t just toss and turn. I actually threw myself up off the bed and on to the other side. You know, like a whale surfacing out of the ocean and plunging back down! There were also a few times I woke up suddenly and thought I was having a panic attack. As someone in my early forties I thought that being tired all the time was now my new normal state.

The ‘wake up’ call came after we went on a road trip. Along our journey we would find some nice B&B and decide to stop there for the night. It was not only challenging adjusting to a queen size bed when we were used to a king, but the constant tossing and turning and of course the snoring was becoming unbearable for my sleep partner. After a few nights of very little sleep I woke up to find my partner had made a bed for themselves in the bath tub! When we got home I promised to go and talk to my family doctor who got me booked in quite quickly for a sleep study. In the meantime I was researching the consequences of sleep apnea and the harmful effects it has on one’s health and wellbeing. This also prepared me much better for the night of my sleep study as I was all ready for getting this problem addressed. About two weeks later I met with a Respirologist who confirmed that I had mild obstructive sleep apnea (OSA). He discussed some treatment options which included what sounded like a painful surgical procedure. When I declined the surgical procedure he offered me a machine and mask which delivers continuous positive airway pressure (CPAP). And I would use this every night. Not only would this provide me with more restful sleep, cut down on developing some of the diseases associated with OSA, but it just may also save my relationship. Although I was excited to finally find a solution to my problem, I approached the idea of requiring Continued on page 14 TRANSPLANT DIGEST - PG 9

Post-Transplant Chat Knowing your Medications Ellenica Hicks, RN, Rachel Tong, RN, Galo Meliton, RN, Jennie Huckle, RN, Kathryn Salvatore, RN, Kevin Bradley, RN

1. How should I keep track of all the medicines I am taking? It is your responsibility to know all your medications. You may keep a list of your medications on paper or as a note on your smart phone. Pharmacies can also give you a small printout that you can keep in your purse or wallet. A family member also can be very helpful to help keep track of your medications.

2. Why do you use two names for each medication?

Most medications have a generic name and a trade name. The trade name or brand name refers to the name given by the company that produces the medication, while the

PG 10 - TRANSPLANT DIGEST

generic name drug refers to the name of the active ingredient. In many cases the trade name is easier to say or pronounce, and so may be used interchangeably but cautiously, but in rare instances knowing the specific brand name is important. Pharmacies will automatically substitute a trade name written in a prescription with the generic name on the bottle label.

3. How many transplant medications do I normally take? Most transplant patients are typically on three types of anti-rejection medications, but some transplant patients may be on just two anti-rejection medications.

4. Do you need me to list all the medicines in a particular order?

can get accurate information when they check your medication list with a pharmacy for a variety of reasons. It is inappropriate and dangerous to change medication doses on your own without informing anyone.

No, as long as all your medications are current and up to date. It may be helpful for you however to group as those you get in the Transplant Clinic and those you get 9. Can I get a prescription for nonelsewhere. prescription (over the counter)

5. Are some medications more important than others? I think you believe the anti-rejection medications are the most important.

All medications are important! They each have a purpose or a role to maintain your health. It is dangerous to think this way.

medications?

Typically, a prescription is not needed for OTC medications. Depending on your drug coverage, some companies will cover over the counter medications.

10. Do you need to know about vaccinations as well? New allergies?

6. Do you need the doses of all my medications? I can’t keep track of all of them.

Our clinic recommends the yearly flu shot, relevant pneumonia vaccines and any nonlive vaccines. These can be done with your family doctor. We strongly recommend It is important to know the current doses the COVID-19 vaccine, so please inform the of each medication you are taking. If any transplant clinic when you received your 1st medication dose adjustment is needed, it will and 2nd dose, the brand of COVID-19 vaccine be based on the current dose. If the current and if you had any adverse reactions. dose is incorrect, it could lead to potential error and cause an unwanted effect to your Please inform the transplant office if you have body or even your transplanted kidney. Ask any allergies, especially medication allergies. If you develop any new allergies, please inform us your pharmacist for help if needed. so your records can be updated.

7. Do you need to be informed of any new medication prescribed between visits?

Yes, please inform the transplant team if there are any dose changes or new additions to your medications from another doctor’s office. We need to check if the new medication could interact with your transplant medications, and also need this information to make future adjustments if necessary.

8. I don’t need more tablets/capsules but the dose has changed. Does the pharmacy still need to know? Yes, the pharmacy needs to be updated so

when you refill your prescription it will be at the correct dose. Also, the transplant clinic

TRANSPLANT DIGEST - PG 11

Adjusting Transplant Research Participation to Pandemic Limitations Lindita Rapi, Transplant Research Coordinator

A year ago, no one would have imagined completing a doctor’s visit over the phone. With patient’s safety in mind, and whenever possible, our Transplant Program adjusted in-person clinic visits to remote visits. The Kidney Research Program, following guidance from the Unity Health Toronto Research Ethics Board, also adapted to remote visits striving to continue essential research while protecting our patients. Many of you have participated or are currently participating in research. Before the pandemic, most likely, you would have heard about research while in transplant clinic and have met with our research team to discuss a particular study and your participation. You would have been given a printed consent package to read at home. If you agreed to participate, your written signature was always required on the consent form confirming your agreement.

questions. This process will give both you and the team another opportunity to clarify key information. For some studies, another member of the research team may be required to be on the call as a witness. This is called giving verbal consent to participate in a research study.

The face-to-face consent process is now being Our Kidney Research Program continues to be largely involved in research studies and projects done remotely, either by phone or email. despite limitations due to the pandemic. If you are eligible for a specific research study, you will receive a phone call from the Transplant In order for our program to be able to contact Clinic asking if you would be interested to speak a patient with the purpose of informing them to the research team or you may have already about a research study, we first need their provided this permission. If your answer is approval. For this reason, you may be asked by yes, then a member of the research team will either your nurse or a clerical assistant, whether contact you and introduce the study in detail. you agree to being approached about research The consent discussion will be done either over at any time. This does not mean that you are the phone or by electronic communication, as consenting to a specific study. It means that, per your preference. Most often, you will have when and if there is a study that may be of the option to receive a copy of the consent form interest to you, the Kidney Research Team, has either by mail or electronically. Some studies your permission to contact you directly and may allow the consent form to be read to you discuss the study. Research is always voluntary over the phone. You will have enough time to and you are free to choose to hear more about think about the study or discuss it with family it or decline. and friends. If you decide to participate, a If you would like to be added to the Research written signature on the consent form may not Contact list or have any questions, please call always be required. Instead and depending on Michelle Nash at 416-867-3692 or Lindita Rapi at the study, you may be asked to answer a few 416-867-7460 ext. 48024. PG 12 - TRANSPLANT DIGEST

Writing to Your Donor Family Galo Meliton, RN and Ellenica Hicks, RN

Having a kidney transplant can be a positive, life changing experience for most. If you had a living kidney donor, one can imagine several ways where you can show your gratitude towards their selfless act. If you had a deceased kidney donor, when you are emotionally ready, we strongly encourage you to write to your donor family a note or letter of thanks in regard to the gift you have received from their loved one: the Gift of Life. Here are a few do’s and don’ts when writing the letter. First and foremost, the letter must be anonymous, meaning it should not have any of your personal information. You can talk about yourself in general terms, your kidney disease diagnosis, how your life was

on dialysis, and how the kidney transplant has changed your life. You may or may not hear from the donor family. Some families have said that writing about their loved one has helped them in the grieving process. Some families prefer to keep things private and may decide not to respond. It may not be easy putting your thoughts and how you feel on paper. You are welcome to speak to one of us in the clinic or even someone who’s had a kidney transplant in the past. One thing’s for sure, it would come easy as long as it comes from the heart. Please give the letter or card to a staff member in the post-transplant clinic. We would be happy to forward it to the Trillium Gift of Life Network (TGLN, the government body responsible for allocating solid organs and tissues in Ontario).

A heart warming letter of the recipient's grand daughter to the donor family. TRANSPLANT DIGEST - PG 13

My CPAP Journey story continued from page 9

a mask with some trepidation. Memories came back to me of times when I took care of patients in the ICU that required a CPAP machine, I used to look at them and wonder how they ever slept with a noisy machine, tight fitting mask and the continuous flow of pressurized airflow. The day I got my CPAP machine I was pleasantly surprised to hear how quiet it was. Since I was a nose breather, I also qualified for the nasal pillows. I was advised to try my machine first whilst I sat and read or watched TV. The ease in which I adapted to the machine was amazing. That first night gave me the most restful sleep that I had in a long time. I woke up feeling refreshed and energized. It PG 14 - TRANSPLANT DIGEST

is now five years since getting the help that I was desperate in need of and know that seeking out that help was one of my best decisions. I could not imagine having a night’s sleep without using my CPAP machine. I wake up rested and more stimulated to tackle the day. Of course I still have periods when I get tired. Some late nights out and watching TV into the night and long work weeks will still have an effect on you. If any of these sound familiar to you or you have been told by your sleep partner that you snore heavily, please ask your family doctor to schedule a sleep study.

Word Search Find the words from the list and assemble the remaining letters for your SECRET MESSAGE! P

WORD LIST animal ICU mutation protein spread vaccine check immunization nurse quarantine strain variant coronavirus isolate oxygen sanitizer telemedicine ventilator doctor lung pandemic save temperature wash economy mask policy screening touch wave hospital mRNA PPE spike travel WHO treatment world health

TRANSPLANT DIGEST - PG 15

Kidney Connect Support Group

St. Michael’s Toronto

Kidney Connect Support Group Schedule - St. Michael’s This support group is an opportunity for you to talk with others who have “been there” too.

Sometimes it helps to talk with someone who understands.

Kidney Connect Peer Support meetings are held via telephone or video conference.

kidney.ca/supportmeetings 1 866 390 7337

Pre-register for the meeting by: Phone: 1 866 390 7337 Email: ontario.programs@kidney.ca After registering, call in details will be provided to join the meeting.

JOIN US EACH MONTH!

We’ve been there too.

Thurs. July 29, 2021 3:00 pm - 4:30 pm

Thurs. Aug. 26, 2021 3:00 pm - 4:30 pm

Thurs. Sept. 30, 2021 3:00 pm - 4:30 pm

Thurs. Oct. 28, 2021 3:00 pm - 4:30 pm

Thurs. Nov. 25, 2021 3:00 pm - 4:30 pm

Thurs. Dec. 16, 2021 3:00 pm - 4:30 pm

All people living with chronic kidney disease are welcome to come to our meetings, including those who are: • pre-dialysis • on dialysis • transplant recipient or donor • family member or caregiver

Meetings take place virtually throughout the year join as many meetings as you like. month, Web: kidney.ca/supportmeetings @KidneyOntario | kidney.ca

Kidney Transplant Program Peopletransplantingpeople

THIS NEWSLETTER IS SPONSORED THROUGH UNRESTRICTED EDUCATIONAL GRANT FROM ASTELLAS CANADA.