Transplant Digest

Fall/Winter 2015/2016, Issue No. 19

In this issue ...Why Do Women Donate Kidneys More than Men?

From the Editor’s Desk

Contact Information

Vitamins and Transplantation

Weight Changes after Transplant

Removing Dialysis Catheters after a Kidney Transplant

Post Transplant Chat - Hyperparathyroidism after Kidney Transplantation

Introducing “Explore Transplant Ontario” – An Education Project

St. Mike’s Becomes Hollywood North for the Filming of Transplant Companions

Inaugural Transplant Champions Workshop a Resounding Success!

Letter to the Editor

A Mother’s Story

Be a Transplant Champion

TRANSPLANT DIGESTFALL/WINTER 2015/2016, Issue No.19

to receive a transplant, and those that do reach ESRD are healthier than women who reach ESRD. Men also have poorer kidney function relative

to their initial function after donation, and so may be turned down from donating as a result. They are also not “sensitized” with antibodies in the way that women can become sensitized after pregnancy, and so their women partners are able to give them their kidneys more easily. These “medical” explanations are what many people believe to be why fewer men donate kidneys.

However, all these reasons can be challenged. Relatively few people in the population have ESRD or a partner with ESRD. There is still a huge general population pool from which men and women can donate equally. There are also more men among deceased donors (about 56%). Men have more kidney function to give when they die, are more likely to die from trauma, and may therefore be more readily accepted as donors by transplant physicians. Yet more women sign up to be donors, and women live longer than men and therefore have longer to live with one kidney afterwards. Women should actually be turned down as living donors because they have less kidney function, but more women are still donors.

Why Do Women Donate Kidneys More than Men? Dr. Ramesh Prasad

Most people who donate a kidney are simply put, good people. Yet it is commonly observed

that women are more likely to donate a kidney than men (about 60:40).

This is true regardless of whether the intended recipient is a man or woman. Why this is has not been subjected to any kind of detailed investigation in recent years. If this issue has interested you before, then you may be able to identify what you think is the main reason

in the next few paragraphs.

Men experience kidney disease more often than women. It is well known

that men outnumber women in end-stage renal disease (ESRD), a requirement

for transplantation, by about 2:1. This may mean that there are less available male live

donors. Men may also have ESRD causes that are more amenable to transplantation. If more men die before reaching ESRD, then there are fewer men who have reached ESRD who are too sick

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Could women have more empathy than men? This is a hot button topic. Social science researchers believe that women and men have equal empathy, but women are better at recognizing emotional cues and are able to express their empathy more. They may also be more impulsive when faced with empathy, or feel somehow “responsible” when their child develops ESRD. Women may also accept body changes that result from donation more than men, because of previous events such as pregnancy, menarche, and menopause. This is all of course speculative, but many people (maybe even you!) think these reasons outweigh the “medical” reasons.

Of course, the reasons for more women may all be social and economic. Men may earn more money than women, and the family unit therefore will be less willing to “allow” the man to take time off from work to donate. Unfortunately, this may translate into a lower position for women on the social scale and in turn compel them to be the donor when the situation arises.

The reasons for why women donate more than men are obviously complex and there may be more than one reason operating. What further research into this issue is needed? What kind of research can be done? We need better data about why potential donors are turned down, or refuse to donate. We also need to study our wonderful altruistic donors more to learn why they became donors, and how they feel afterwards. All donors will need long-term, serial assessments. Donors who are accepted despite having had a possible reason to be turned down (such as “borderline” hypertension or diabetes) are also an interesting group to study. A study of economic reimbursement of donors based not on a fixed amount, but by an amount proportional to their pre-donation income would help address any reasons of economic disparity. Finally, neuropsychological testing with MRI scans and other brain scans of both donors and non-donors will help us find out why some people become donors and others don’t. These kinds of studies require dedicated investigators and lots of research funding, but they also need willing research volunteers.

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St. Michael’s HospitalRenal Transplant Program(across the hospital)61 Queen Street 9th Floor Toronto, Ontario, M5C 2T2 Phone: (416) 867-3665

Please send your comments or sugges-tions of topics for future publication to:jayomam@smh.ca

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 to individual patient circumstances. For all questions related to your own health please contact your health care provider.

Contact InformationDr. Ramesh Prasad – EditorMeriam Jayoma-Austria, RN, BScN,CNeph(C) – Newsletter Coordinator

We hope you were able to enjoy the excellent summer that just went by in Toronto. From my own perspective, the summer of 2015 easily outshone the past two or three summers, with its perfect combination of sunshine, just the right amount of rain, and warm-but-not-too-hot temperatures. Indeed, when our healthiest patients come in for their annual visit, many of them remark that the year just flew by for them. Time seems to pass so much faster when you are having fun, which in this case means having a healthy kidney transplant where everything comes together just right: the transplant’s function, the amount and type of immunosuppression, and the control or avoidance of medical conditions that affect both the transplant and overall health. Analogies like these can be a wonderful tool in understanding health-related issues.

In this issue of Transplant Digest, we tackle such diverse topics as the gender disparity in living kidney donation, weight changes after transplantation, the use of vitamins, hyperparathyroidism, and dialysis catheter removal. News items focus on Transplant Champions. We have items written by a transplant recipient and the mother of a donor. We are excitedly headed towards preparing our Tenth Anniversary Issue of the twice yearly Transplant Digest next spring, at which time we hope to begin a new cycle of topics targeted to a new generation of readers. Until then, enjoy reading this issue no. 19.

Dr. Ramesh Prasad, Editor

From the Editor’s Desk

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Vitamins and TransplantationOne of the most common questions we get asked in the Transplant Clinic is: should I take a multivitamin? This question is often driven by a concern about general health maintenance, but may also be due to the fact that dialysis patients are often prescribed vitamins. Sometimes blood vitamin levels are also tested. Before answering this question, let us discuss a few facts.

The vitamin list is a fairly short one. There are vitamins A, B, C, D, E, and K. Vitamin B in turn consists of a “family” including thiamine, riboflavin, niacin, biotin, folic acid, and B12, among others. While vitamins B and C are “water soluble”, the rest are “fat soluble”. Toxicity from too much vitamin results mainly from the fat soluble vitamins because they can be stored in the body. It is generally quite rare to see toxicity from fat soluble vitamins, but this always remains possible.

Blood tests are commonly available for folic acid, B12, and vitamin D, but not the others. Folic acid and B12 are usually tested when certain kinds of anemia (called “megaloblastic anemia”) are suspected.

On the other hand, we routinely test for a form of vitamin D called “25-hydroxy vitamin D”. This is because derangements in vitamin D metabolism and diet can carry over from dialysis to the post-transplant period. Maintaining a normal vitamin D level will help with maintaining bone health, but there may also be other benefits. There is no known direct relation between vitamins and your transplant’s performance.

Taking a multivitamin after transplant is usually not necessary, but you may be advised to do so in the Transplant Clinic depending on your specific situation. You may instead be asked to take a specific vitamin which will be prescribed to you, based on your blood test results. Some vitamins (e.g. vitamin K) vary markedly in content among the foods you eat, and this in turn could affect how some medications (like blood thinners, warfarin or Coumadin) work. So you may also receive vitamin-related diet advice. Feel free to discuss any

concerns you may have about vitamins in the Transplant

Clinic. It is better not to take any

vitamins on your own.

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Weight Changes after TransplantDr. Ramesh Prasad

All post-transplant patients know that their weight is checked at each visit. This may seem like a nuisance or an embarrassment. Why do we take this so seriously?

Weight change may be either weight gain or weight loss. Between the two, weight gain is much more common. Patients typically gain weight in the first few months after the transplant. This may be because they are feeling better and therefore eat more, while at the same time not increasing their exercise proportionately, or they may just be eating the wrong kinds of food. In any case, this weight can be extremely hard to take off afterwards. It is true that some anti-rejection drugs can stimulate the appetite. Insulin taken for diabetes can also cause weight gain. Checking the weight at each visit will allow us to counsel patients early on in the process of weight gain so that suitable steps can be taken to ensure that no further weight is gained, or a return to the original weight is possible. Since weight gain can also be the result of salt and water retention, reporting the weight to us in kilograms, not pounds,

is important because one litre of water weighs one kilogram and so we can monitor

how much water you have gained or lost with medications or other therapies as well. It is rare, however, to change medications because of weight gain when this is due to fat, not water, because it

could be really dangerous for the transplant. At all times,

following a proper diet and a structured exercise routine that is

appropriately supervised is very important in maintaining a healthy weight. Too much

weight gain can cause heart problems, diabetes and hypertension, worsen arthritis,

put extra strain on your transplant, and cause deep vein thrombosis.

Weight loss can also be serious. If someone starts to lose a lot of weight when the weight had been stable for a long time, it is important to think of serious underlying conditions. Depression, high thyroid hormone, and cancer are only a few of the possibilities. It is therefore important for you to check your weight regularly, and report your weight to your family doctor right away if you are concerned and your transplant clinic visit is still far away.

Finally, we measure the waist and hip circumference in the transplant clinic at least once or twice a year. This may provide some extra motivation for you if the overall weight in kilograms does not mean much. Weight distribution around the body can also be unequal. For example, more weight gain around the waist has a bigger correlation to heart disease and diabetes than does weight gain around the hips. Weight gain around the waist is never due to building muscle.

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There is nothing more exciting than getting a kidney transplant and the transplant working well. This means that dialysis, whether it is hemodialysis (HD) or peritoneal dialysis (PD), is no longer needed. Often, this comes after many years of dialysis. It is a great relief to patients to get these catheters taken out, once and for all!

HD catheters (also called Uldall-Cook or “UC” lines) can be taken out while you are still in the hospital, provided the transplant is working well and HD is clearly no longer needed. Sometimes it is better to go home with the catheter if HD may be needed, for a few weeks. Once transplant function is fully established, HD catheter removal can be arranged at St. Michael’s as an outpatient in the Radiology Department. Unlike HD catheters, PD catheters can be removed at the time of the operation in the case of living donor transplants if they show good function in the operating room. If not, or in the case of deceased donor transplants, PD catheters will need to be removed as an outpatient, but this can be more complicated than HD catheter removal because it requires an operating room. Again, once it is established that the transplant is working well, it may be much quicker in this situation to have the PD catheter taken out at your dialysis hospital rather than St. Michael’s.

Removing Dialysis Catheters after a Kidney Transplant

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Post Transplant Chat - Hyperparathyroidism after Kidney TransplantationFernanda Shamy RN; Jennie Huckle RN; Sarah Mattok RN; Kevin Bradley RN; Michelle Gabriel RN

1. I have been told I have a high “PTH”. What is PTH? Should the PTH be normal after transplant?

PTH stands for Parathyroid Hormone. PTH controls calcium and phosphorus levels in the blood. PTH is made by the parathyroid glands , which are four pea-sized glands that lie behind the thyroid gland in your neck. The parathyroid glands produce parathyroid hormone, which helps maintain an appropriate balance of calcium in the bloodstream and in tissues that depend on calcium for proper functioning. The normal range for PTH is 1.6 – 6.9pmol/L.

Many people with kidney disease have “secondary hyperparathyroidism”. High levels of phosphorus in the blood can cause the parathyroid gland to grow bigger and produce more PTH. Even if a transplanted kidney is working well, your parathyroid gland may still be working in overdrive and producing high levels of PTH.

2. The PTH is just a number. I feel fine. Why should I be concerned?

PTH levels that are too high or too low can cause problems with the kidneys and bones and cause changes in calcium and vitamin D levels. These changes can contribute to kidney stones, bone disease, hardening of the arteries, heart disease and potentially cause stress to your transplanted kidney. Very high or very low calcium levels can be life-threatening.

3. Will high PTH hurt the transplant?

If the blood calcium level is too low, the parathyroid glands release more PTH. This causes the bones to release more calcium into the blood and reduces the amount of calcium released by the kidneys into the urine. Calcium can deposit in the transplanted kidney or squeeze the blood vessels and cause stress to your transplant, causing your creatinine to increase.

A high PTH level along with a high calcium level can cause problems such as osteoporosis, kidney stones, high blood pressure, kidney failure, peptic ulcer disease, cognitive changes, and problems with the balance of water in the body.

4. What are the symptoms of high PTH?

High PTH by itself will not make you feel any differently. If PTH affects your calcium levels, you may have:

• Fragile bones that easily fractured (osteoporosis)• Kidney stones• Excessive urination• Abdominal pain• Tiring easily or weakness• Depression or forgetfulness• Bone and joint pain• Frequent complaints of illness with no apparent cause• Nausea, vomiting or loss of appetite

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5. What other tests are done when the PTH is abnormal? Where can I do these tests?

Each person is different, so different tests will be done depending on your particular case. Talk to your transplant team about what tests are right for you. Some common tests are:

• Blood tests such as calcium, phosphate, and vitamin D will be tested.

• Bone mineral density test (bone densitometry). Looking for weakness of the bones

• Urine tests. A 24-hour collection of urine can provide information on how well your kidneys function and how much calcium is excreted in your urine.

• Imaging tests of kidneys. Your doctor may order X-rays or other imaging tests of your abdomen to determine if you have kidney stones or other kidney abnormalities.

• Sestamibi parathyroid scan (nuclear medicine)

These tests can be completed at St. Michael’s Hospital or at your local lab

6. How often do you check my PTH?

Your PTH is typically checked every 6 months post transplant or more often if necessary.

7. Are there medicines for high PTH?

There is a medicine called cinacalcet, also known as Sensipar. This kind of drug is called a calcimimetic because it mimics calcium circulating in the blood. The drug may trick the parathyroid glands into releasing less parathyroid hormone. This medicine is very costly, and it is not currently covered by government drug plans or some insurance providers.

8. I can’t afford my medicines for high PTH. What can I do?

Talk to your transplant team about your options. Surgical intervention may be required to remove your parathyroid glands.

9. Will I feel better after the PTH is treated?

You may not feel any different right away, but your body will thank you in the long term.

10. Is there anything in my diet that will help make the PTH better?

• Monitor how much calcium and vitamin D you get in your diet.

• Drink plenty of fluids. Drink enough fluids, mostly water, to produce nearly clear urine to lessen the risk of kidney stones.

• Exercise regularly. Regular exercise, including strength training, helps maintain strong bones. Talk to your doctor about what type of exercise program is best for you.

• Don’t smoke. Smoking may increase bone loss as well as increase your risk of a number of serious health problems. Talk to your doctor about the best ways to quit.

• Avoid calcium-raising drugs. Certain medications, including some diuretics and lithium, can raise calcium levels. If you take such drugs, ask your doctor whether another medication may be appropriate for you.

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Most of the public is aware of the word ‘cancer’. Instantly, alarm bells ring as soon as we hear this word. Why is it then that when we say “kidney failure” or “dialysis”

people know little to nothing about it? Many know what diabetes and high blood pressure are. However, much less people know that patients who have

diabetes or high blood pressure can also develop kidney failure.

In 2013 over 23,000 Canadians were treated with dialysis but only about 15% of these patients were wait-listed for kidney transplantation (KT). Compared to deceased donor kidney transplantation, living donor kidney transplantation (LDKT) is the optimal treatment choice for patients with end stage kidney disease (ESKD): the wait time is shorter and the prognosis is better.

Many of the patients on dialysis or approaching ESKD may not fully understand what a transplant is; could that be an option for them or not;

and what the potential risks may be. Often, patients and their families know even less about LDKT. Patients who consider these options might have plenty

of questions and concerns about the process, the procedures involved, the surgery and recovery and how their life would change with a transplant. These questions and

concerns may “double” if a close family member is involved, so both have surgery at the same time. People who might want to donate a kidney also have to learn about the risks and benefits of living donation. According to research 60 percent of all Canadians do not fully understand or retain information well that is given by their health care provider, because of language, health literacy, educational or psychological barriers. As a result, patients often do not know what to do even if they receive information about their treatment options. They may not know where to start, whom to turn to.

To facilitate change in the above, Dr. Istvan Mucsi, nephrologist at the Multi-Organ Transplant Program, Dr. Marta Novak, psychiatrist at the University Health Network and Dr. Amy Waterman, Associate Professor at University of California- Los Angeles have teamed up with 25 professionals (including nephrologists, nurses and patient educators) and also patient representatives from Ontario hospitals, dialysis and transplant centers to adapt a transplant education program called “Explore Transplant”. Dr. Waterman had created the original program that is currently being used by more than 3,000 dialysis units in the US. The adapted version, “Explore Transplant Ontario” will provide video and print educational material about kidney transplant and living donation that is adapted to the Ontario health care environment, for patients with chronic kidney disease, their family and friends, potential living donors, and the public.

Although patients have a higher chance to live longer with a transplant compared to staying on dialysis, only about 1,700 of the 11,000 patients that are treated with dialysis in Ontario are on the transplant waiting list. Only 503 transplants happened in 2013 in our province. Cultural factors, language barrier, fears and concerns about transplant, anxiety and depression, and also lack of time for providers to educate are just a few of the obstacles which prevent patients to consider and to get a kidney transplant. Family members of these patients frequently don’t know that they could be living donors to help their family members.

“Explore Transplant Ontario” will help patients think about what might motivate them to pursue transplant, address commonly held concerns about deceased and living donor transplantation, share real-life transplant stories of recipients and living donors and present a series of actions that an interested patient could take to pursue transplant.

“Explore Transplant Ontario” will be pilot tested in a research study lead by Dr. Mucsi and funded by the MSH-UHN AMO Innovation Fund in 2016. The ultimate goal of the adaptation process is to have Explore Transplant Ontario available for all patients, their family members and friends who have advancing kidney failure and also for the health care professionals who treat them and educate them about their treatment options. Family practitioners, kidney disease clinics, dialysis units and transplant centers may all want to use this program. This education program will help ensure that every patient and everyone who cares about them has access to information that they need to decide about getting waitlisted or working towards living donor transplants.

Introducing “Explore Transplant Ontario” – An Education ProjectIstvan Mucsi, Nephrologist, Multi Organ Transplant Program, UHN Associate Professor of Medicine, University of Toronto

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St. Mike’s Becomes Hollywood North for the Filming of Transplant CompanionsIf you noticed a small film crew in our Transplant Unit this September, it wasn’t your imagination. In fact, St. Mike’s Hospital was selected to host the filming of an educational video that will be used to help pre-and post- transplant patients enjoy greater access to information as they consider or recover from renal transplant surgery.

The filming at our hospital was by no means a chance occurrence. St. Mike’s is credited with being one of the pilot centres for a unique renal transplant education program called Transplant Companions funded since 2001 at select transplant centres across Canada through an educational grant from Astellas Pharma Canada. Our involvement over the course of nearly 15 years includes contributing to the curriculum of the program and to several rounds of updates to make sure that the content evolved with advances in medical science and a multi-disciplinary approach. Input has also come from transplant surgeons and nurses, pharmacists, physiotherapists, social workers and patient groups. The Kidney Foundation of Canada has also endorsed the program and provided input.

We have been involved actively in many other ways as well including being featured in newsletters that go to program participants and a beautiful commemorative booklet recognizing the participating centres and lending our knowledge in the Ask the Expert series.

St. Mike’s offers the Transplant Companions program as a compulsory part of the transplant process for individuals contemplating a kidney transplant, often

accompanied by family

members. We have run several hundred workshops since we came on board. Continuity and consistency has been a hallmark of the program due in no small measure to the commitment of the transplant team. Galo Meliton RN, C Neph (C), Renal Transplant Coordinator , is not only one of the most experienced TC facilitators, but one of the original Steering Committee members as well.

T r a n s p l a n t Companions is founded on a

small group learning model in the form of an interactive workshop where individuals

not only learn about how the kidney functions,

preparing for surgery and the life-long medication regimen they will follow, but also have a rare opportunity to hear from a transplant recipient. The patient facilitator, whose own experience provides an honest picture of what to expect throughout the process, is one of the most valued components of the program. In addition to the workshop, participants receive a Workbook that they can refer to, supported by the Transplant Companions website www.transplantcompanions.ca which includes information in Italian and Mandarin as well.

While the workshop typically includes 15-20 participants, a larger number was on hand for the special filming. This video will be used to help inform and educate people who may reside in remote areas of the country and therefore are unable to participate in one of the workshops. In addition to St. Mike’s, Transplant Companions is available in 12

Canadian transplant centres and is compulsory in half of them.

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On June 12, 2015, the St. Michael’s transplant team hosted our first one-day patients’ workshop. The event was held at the Li Ka Shing knowledge institute of St. Michael’s Hospital. This brand new and award-winning building provided the perfect open concept event space for the workshop. Over 50 patients and family members attended the event.

The day started with a light breakfast served in the lounge café space where patients, families and staff mingled with each other over coffee and fresh fruit. We were thrilled with the great turnout to the event. The classroom was absolutely jam packed. In fact, extra chairs were needed for all the extra audience.

Michelle Gabrielle, RN, presented the first session about healthy living after transplant. She reviewed important points such as cancer screening, vaccines and dental health. Many patients asked questions and showed great interest in how to prevent illnesses. Next, Jennie Huckle, RN, carried on with the same theme with a demonstration on how to gradually incorporate regular walking into daily life. Nutrition was the next topic which was discussed in an informative presentation by our dietician Jenny Accettura. Jenny fielded many questions from the audience about nutrition after transplant during a lively discussion period. The final session of the morning was presented by Lucy Chen, pharmacist, who talked about how patients can advocate for themselves when it comes to medication safety. The audience was both entertained and educated with Dr. Mike Evans’ Youtube whiteboard video about “one simple solution for medication safety”.

Over lunch, patients had more time to connect with each other and chat about their experiences along the transplant journey. St. Michael’s Marketeria catering staff did an excellent job of preparing delicious and healthy Portobello mushroom turkey paninis.

During the afternoon, Nancy Hemrica, a representative from Trillium Gift of Life (TGLN), shared how her organization promotes organ and tissue donation and transplantation across Ontario. Audience members were surprised to learn what organs and tissues can be donated and transplanted and that one individual can help many through donation. Next, Sandra Holdsworth of the Canadian Transplant Association connected with the audience as she shared her own experience of life post-transplant. She continued to build on the day’s theme of staying healthy and active. She invited everyone to participate in the next Canadian Transplant Games being held in Toronto Aug 8-13, 2016. She emphasized the games are open to all ages and abilities. Finally, Sharon Lee, social worker, provided guidance on how to navigate government benefit programs.

Everyone who attended was given a small gift bag of sunscreen, toothbrush, mouthwash, floss, coupons for dental products and postcards to help them get started with living healthily. We are grateful to Dr. Natalie Kos and the St. Michael’s occupational health clinic for donating the gift bags. Many patients stayed after the end of the workshop to talk and connect with their new friends they had met that day.

The day could not have been possible without the generosity of our sponsor Astellas.

We hope you can join us for our next workshop on November 10, 2015! RSVP is required.

Inaugural Transplant Champions Workshop a Resounding Success! Lucy Chen, RPh

Transplant Informed is a brand new resource for patients to get information on various health concerns after transplant. Workshop participants were the first patients in Canada to get a sneak peek!

Sharon Lee, social worker, presenting on how to navigate government benefit programs.

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My name is Arie, I am 37 years old, and I had a living kidney donor transplant at St. Michaels Hospital in 2014; before that I was a home hemodialysis patient in another city. I have been around the nephrology circuit at multiple centers now for over 25 years because my mother has PKD and went into renal failure when I was in high school, she has had 2 failed transplants and is currently a stable dialysis patient who inspires me to live life to the fullest just as she does. Having been though different treatment centers myself and with my mother, I have perspective that other patients may not have on the ways in which our illness is treated.

I’m sure all of your staff at St. Mikes have been thanked in the past by patients for their excellent and professional skills, and they deserve all those thanks - but there is more than professional skill that makes this hospital truly special. I feel it is important to let you know how uniquely compassionate your treatment philosophies are, and to thank the nephrology and urology teams at St. Mikes for the little things that they do that perhaps, other patients may take for granted. Things that do not necessarily happen elsewhere, but have made a lasting impression on me.

What first brought me here was your progressive view on who can

be a living kidney donor. Though the laws are clear that any healthy adult who does not receive compensation, can potentially be a living donor, some centers add additional criteria to refuse or deter potential donors. I was not treated with suspicion by your department for being publically open about my search for a living kidney donor, instead I was supported and encouraged to have potential donors call in and speak with Maureen until a candidate was found.

Furthermore, those potential donors that came forward to speak with this department, were all promptly called back, and those that came in for a consult or progressed on to a workup were made to feel good about what they were doing. They were treated with the highest levels of respect, and regardless of the reasons they either were, or were not suitable candidates for me in the end, they left you feeling good, feeling informed, and feeling confident about their decision which is all I could ever ask for. Thank you for treating my potential donors in this manner.

My nephrologists and surgeons (just to name a few), Dr. Prasad, Dr. Zaltzman, Dr. Ordon and Dr. Harel, were all so patient and thorough when consulting with me, in my 2 years in your program I have learned so much more about my condition, simply because

everyone here takes the time to explain things patiently. The level of respect extended to me here by you did not go unnoticed by me. For example, during routine follow-up appointments, Dr. Prasad and Dr. Zaltzman greet me with a handshake and ask me how I feel. By the time I came to your department for treatment I was in my sickest state ever, but you never sought to treat me with any less respect, I was always made to feel less like a sick patient, regardless of what the blood work may have said.

Another unique thing about being here is that at St. Mikes, everyone offers to help you find your way. This not only helps you avoid getting lost, but makes you feel more welcome. Any patient within these walls is here because they need to ask for help, and when you have a chronic illness you are constantly asking for help, many times just to survive.

It was a nice experience to have doctors and nurses approach me in the hallways every time I stopped to look at a map, and offer their assistance to help me find my way. This is just one example of a philosophy I see is prominent at St. Mikes, in that patients are treated with dignity. I never had to ask for everything I needed, sometimes you just offered, and it made an otherwise helpless situation, feel a bit better. Thank you for this.

Letter to the Editor Arie Pekar

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Being a self-employed owner of a company with 10 employees, all of whom relied on my health to determine the outcome of the business, and subsequently their jobs, made dealing with a chronic illness stressful. On the week I started dialyses, my wife had an emergency cesarean section and my son entered the world a little earlier than expected. The stress continued to pile …There were not nearly enough hours in the day for me to stay on top of my health, my family and my business. It was a juggling act at best and what made it possible to manage was that all of you valued my time. Whether it was a request to reschedule an appointment, or a test that I could do in my home town – you made countless efforts to accommodate me which I truly appreciated.

Another accommodation I appreciated, is the use of Email as an acceptable means to coordinate, and communicate with my health care team. Email matches my communication style and allows me to send messages when and how they are most convenient for me. This was of great benefit for me, as I could now be kept in the loop, schedule and reschedule appointments much faster than having to wait weeks for them to come by mail.

When dealing with a process that relies on coordination and communication, I can’t speak any higher of the coordinators I dealt

with at St. Mikes, and specifically Galo, who was my transplant coordinator. The speed, reliability, accuracy, and consistency of communication I experienced with Galo, was exemplary. Galo is one of the most sincere and caring health professionals I have ever met.

With the busy schedule I had to juggle in order to keep my company afloat while on dialysis, the constant exhaustion and sleep that goes along with renal failure, a wife recovering from a surgery of her own, and a new infant to enjoy; having an organized medical team made it possible for me to take care of myself, take care of my family, and save my business.

Thank you for everyone who congratulated me after my successful transplant – the philosophy of transplant being the preferred treatment method for my disease is not universal amongst hospitals. At this hospital, the fact that staff congratulates patients on a transplant tells me that you believe that I am choosing the better treatment, which makes me feel much more confident in my team.

I wanted to thank you for one more seemingly small philosophy in patient care I noticed once I transferred here and that made a big impact in my decision to continue my long term care at

this facility. During clinic visits, rather than be focused on patient compliance, you start each appointment with a nurse, fellow or resident, asking me how I feel and letting me talk first. This makes me feel like you genuinely care about me and my health, over caring that I am merely a compliant patient.

So whether or not it is your standard procedure to establish this at every meeting, you never made it obvious to me because you always let me talk first, never rushed me out of a consult with questions unanswered, and you never made me feel like the genetic disease I inherited was my fault.

This and all the reasons I have just listed, are why following my transplant, I requested to continue on with my long term care here at St. Mikes, even though it is out of town for me. And I am grateful to have been granted the choice.

I trust my medical team here at St. Mikes;

I trust your patient care centered philosophies;

I trust your progressive use of technology;

I trust I won’t ever get lost in your building;

For all of this and so much more, thank you!

Sincerely,

Arie Pekar

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There is a knock at the door. Two police officers wait on the porch, hearts in hands as they prepare to deliver the tragic news. It is every parent’s worst nightmare. Peter has been in a terrible car accident. He was airlifted to the nearest trauma centre.

I arrive at the hospital and am taken to see my son immediately. Peter is in the intensive care unit, surrounded by the latest in technological equipment. The trauma team is working frantically to care for Peter. I look at him in disbelief. This isn’t’ true, it can’t be happening. A few short hours ago, he left home for a night out with his friends.

Peter suffered a devastating head injury. There was nothing to be done; no surgery could repair the damage. The trauma team was very worried about Peter. They did not think he would survive. The neurosurgical team would re-assess Peter in the morning. For now, he was in the care of the ICU staff. I sit by the bed and wait; for morning, for better news, for the terrible nightmare to be over.

I sit by Peter’s bed, holding the hand of my 19 year old son who looks like he is sleeping, not slowly dying. Family and close friends have also gathered at the hospital to offer support.

The team meets with us and explains the changes in Peter over the last few hours. The swelling in his brain has worsened. Peter no longer has any brain stem reflexes, he is not responding. The Doctors explain how Peter has lost his ability to think and remember. He has lost his personality and the things that make him special. Peter has also lost his very basic brain stem reflexes, things that we are all doing without conscious thought....blinking, swallowing, coughing and breathing. Peter’s brain has died.

The Doctor introduces us to the Trillium Gift of Life Organ and Tissue Donation Coordinator. She spends time explaining about donation and the opportunity we have to save the lives of possibly eight other people through the gift of organ donation, was this be something that would have been important to Peter? Through my grief I simply smile. Helping and caring for others is who Peter was. I agreed without hesitation. It is exactly what Peter would have wanted. I know without question I am honouring his wishes.

Peter tragically lost his life in the accident but as a result of his kindness, grace and love of humanity his memory will live on as many others now have the chance for a new life filled with health and possibilities.

Peter donated his heart, lungs, liver, pancreas and both kidneys as well as corneas and bone tissue. A terrible tragedy became an opportunity for so much more; a chance for new life and a lasting legacy in honour of a special young man who left this world a better place.

A Mother’s Story

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Come on out this November 10th and be a

TRANSPLANT CHAMPION

When: Tuesday, Nov 10, 2015

Time: 10am to 3pm

Location: Li Ka Shing Learning Institute, 209 Victoria Room 241

Cost: FREE

Connect with Other Patients /

Get Peer Support

Learn about healthy living

strategies

Learn coping strategies from

our Patient Panel

RSVP to Sharon Lee (lees@smh.ca or 416-864-6060 ext 4173)

By Nov 6, 2015

ALL Transplant Patients & their families are welcome !!!

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Please call Sharon at (416)-864-6060 ext 4173 or lees@smh.ca to Register

Program 10:00 am Registration & Opening Remarks Emcee: Michelle Gabriel (RN) 10:30 am “Dr. Google:” Finding Reliable Health Information Online Bridget Morant (Info Specialist -Consumer Health & Education)

11:00 am Patient Panel: Coping Strategies & Self Care Discussion; Questions & Answers Moderated by Sharon Lee SW

!2:00 pm Lunch Provided & Patient Meet and Mingle 1:00 pm Kidney Regeneration and Stem Cell Therapies Dr. Darren Yuen 1:45 pm Transplant Options for a Second Transplant Maureen Connelly (RN, Living Kidney Donor Coordinator) 2:15 pm Break

2:30 pm Open Forum: We’ll take your Questions Jenny Accettura (Dietician), Lucy Chen (Pharmacist), Michelle Gabriel (RN), Sharon Lee (SW)

3:00 pm Wrap up & survey

Optional : 3:30—4:30 Computor Lab Session on Finding Reliable Health Information

FREE Event (Lunch Provided ) Post Transplant Patients /Significant others are welcome

Tuesday, November 10, 2015 10am to 3pm Location: Li Ka Shing Institute, 209 Victoria Street, Room 241

Mini Symposium #2 for Post Transplant Patients

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NOTES

NOTES

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NOTES

Funding for this publication provided by Hoffmann-La Roche Limited

Sa

ve The Date!!! RenalTransplantSymposium

Friday, June 17, 2016

Stay tunedfor details….