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Transplant Digest Spring/Summer 2017, Issue No. 22 Continued on page 2 Transplant Digest Spring/Summer 2017, Issue No. 22 In This Issue... St. Michael’s Scientist “Mind” Their Own Business From the Editor’s Desk Contact Information The Importance of High Blood Pressure Xenotransplantation Caputo Family Fundraising Event for St. Michael’s Hospital Kidney Transplant Program Transplant Team Goes for a Field Trip to the Histocompatibility Lab What are Allo-Antibodies ? Post Transplant Chat: Anemia after Transplantation Home Care after Transplantation Information on Lifelabs for St. Michael’s Post Kidney Transplant Recipient A Thank You A Patient Experience as a Patient Family Advisor Become A Patient and Family Advisor at St. Michael’s St. Michael’s Scientists ‘Mind’ Their Own Business By Geoff Koehler, St. Michael’s Communications & Public Affairs Dr. Darren Yuen, a transplant nephrologist and Dr. Richard Gilbert, head of the Division of Endocrinology and Metabolism for St. Michael’s Hospital, work together on cases where diabetes and kidney disease intersect. Both of them are also scientists with the Keenan Research Centre for Biomedical Science. On top of stethoscopes and microscopes, the pair has added business scope to their frequent discussions—with the launch of a company called Fibrocor. Drs. Gilbert and Yuen are two of the three scientific co-founders of Fibrocor, who will work to identify targets and develop therapies to prevent, slow and ultimately reverse organ scarring. “Scarring, or fibrosis, can help people in the short-term—such as healing after a cut or Dr. Darren Yuen holds a slide with samples of scarred kidney tissue. He and sealing off an infection Dr. Richard Gilbert are two-thirds of the co-founders of a new company called so that it does not Fibrocor. (Photo by Katie Cooper, Medical Media Centre) spread—but when an injury is chronic, such as with diabetes, the amount of scar tissue formed can cause organ malfunction,” said Dr. Gilbert, who also holds the Canada Research Chair in Diabetes Complications. The researchers and fellow co-founder Dr. Jeff Wrana, a professor in the University of Toronto’s Department of Molecular Genetics and senior investigator at Mount Sinai Hospital’s Lunenfeld- Tanenbaum Research Institute, will test biopsy samples of scarred human tissue. They will measure which genes the body activates when scarring begins. “Once we know what pathways are involved in activating the body’s scarring response, we’re well on our way to understanding how to block it,” said Dr. Yuen. “And because we’ll identify these pathways using human tissue samples, we think they’ll have a much better chance of being effective in future clinical trials.” Although scarring underlies the development of liver failure, heart failure and certain type of lung disease, the company’s initial focus will be on kidney disease—reflecting Dr. Gilbert’s and Dr. Yuen’s clinical backgrounds and the tremendous unmet need.
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Transplant Digest - Spring/Summer 2017 · vigorously. Xenotransplantation is presently far from being a solution to the organ shortage. Some studies report limited success in transplanting

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Page 1: Transplant Digest - Spring/Summer 2017 · vigorously. Xenotransplantation is presently far from being a solution to the organ shortage. Some studies report limited success in transplanting

1

Transplant DigestSpring/Summer 2017, Issue No. 22

Continued on page 2

Transplant Digest

Spring/Summer 2017, Issue No. 22

In This Issue...St. Michael’s Scientist “Mind” Their Own Business

From the Editor’s Desk

Contact Information

The Importance of High Blood Pressure

Xenotransplantation

Caputo Family Fundraising Event for St. Michael’s Hospital Kidney Transplant Program

Transplant Team Goes for a Field Trip to the Histocompatibility Lab

What are Allo-Antibodies ?

Post Transplant Chat: Anemia after Transplantation

Home Care after Transplantation

Information on Lifelabs for St. Michael’s

Post Kidney Transplant Recipient

A Thank You

A Patient Experience as a Patient Family Advisor

Become A Patient and Family Advisor at St. Michael’s

St. Michael’s Scientists ‘Mind’ Their Own BusinessBy Geoff Koehler, St. Michael’s Communications & Public Affairs

Dr. Darren Yuen, a transplant nephrologist and Dr. Richard Gilbert, head of the Division of Endocrinology and Metabolism for St. Michael’s Hospital, work together on cases where diabetes and kidney disease intersect. Both of them are also scientists with the Keenan Research Centre for Biomedical Science.

On top of stethoscopes and microscopes, the pair has added business scope to their frequent discussions—with the launch of a company called Fibrocor.

Drs. Gilbert and Yuen are two of the three scientific co-founders of Fibrocor, who will work to identify targets and develop therapies to prevent, slow and ultimately reverse organscarring.

“Scarring, or fibrosis, can help people in the short-term—such as healing after a cut or Dr. Darren Yuen holds a slide with samples of scarred kidney tissue. He and sealing off an infection Dr. Richard Gilbert are two-thirds of the co-founders of a new company called

so that it does not Fibrocor. (Photo by Katie Cooper, Medical Media Centre)

spread—but when an injury is chronic, such as with diabetes, the amount of scar tissue formed can cause organ malfunction,” said Dr. Gilbert, who also holds the Canada Research Chair in Diabetes Complications.

The researchers and fellow co-founder Dr. Jeff Wrana, a professor in the University of Toronto’s Department of Molecular Genetics and senior investigator at Mount Sinai Hospital’s Lunenfeld-Tanenbaum Research Institute, will test biopsy samples of scarred human tissue. They will measure which genes the body activates when scarring begins.

“Once we know what pathways are involved in activating the body’s scarring response, we’re well on our way to understanding how to block it,” said Dr. Yuen. “And because we’ll identify these pathways using human tissue samples, we think they’ll have a much better chance of being effective in future clinical trials.”

Although scarring underlies the development of liver failure, heart failure and certain type of lung disease, the company’s initial focus will be on kidney disease—reflecting Dr. Gilbert’s and Dr. Yuen’s clinical backgrounds and the tremendous unmet need.

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By 2018, Fibrocor expects to have developed a new anti-scarring drug that will be ready for testing, not only in kidney disease but also in other diseases that involve fibrosis, the doctors said. The world-class academic team is complemented by management and business development from MaRS Innovation and drug discovery and development services from Evotec AG.

“Because drug development is incredibly expensive and most granting agencies don’t fund this sort of activity, forming the company was a necessity,” said Dr. Yuen. “With Fibrocor, we’ll be part of the developmental strategy, taking our knowledge from the clinic, to the lab, to the boardroom and, hopefully, all the way back.

From the Editor’s DeskWelcome to the Spring/Summer 2017 edition of Transplant Digest! As the old saying goes, change is the essence of life. There is nothing more life-changing than an organ transplant. An organ transplant is a gift of life. This change also brings about an awareness of new medications, procedures, and tests; the need to learn new ways of doing things, and getting to know new people. Through Transplant Digest, we strive to help patients and their caregivers as much as possible in making the transition from life on dialysis or pre-dialysis to life with a transplant, and to hopefully live successfully for many years with the transplant. Information is power. Another saying goes like this: one is only as good as one’s information.

We have hopefully some interesting reading for you in this issue. There are articles on antibody testing, hypertension, and anemia after transplantation. For those interested in the future of transplantation, there is an article on transplants from animals. Far more down-to-earth than transplants from animals are features on home care after transplantation, getting your blood work done in our new model, and our patient advisor program. We encourage you to read through each issue as best as you can. The next issue is six months away, but past issues are available on the internet. In between each issue, staff in the transplant clinic is always available St. Michael’s Hospital

Renal Transplant Program(across the hospital)61 Queen Street 9th FloorToronto, Ontario, M5C 2T2Phone: (416) 867-3665

Please send your comments or suggestions of topics for future publication to: [email protected]

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 own health please contact your health care provider.

to answer questions about these and any other topics.

Dr. Ramesh Prasad, Editor

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

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The Importance of High Blood PressureDr. Darren Yuen

Hypertension, otherwise known as high blood pressure, is common post-transplant, with more than 50% of patients having a blood pressure > 140/90. The high frequency of hypertension is, in part, because high blood pressure is common pre-transplant. This risk is further increased by some of the anti-rejection medications that we use.

Why should we care about high blood pressure? Blood pressure is the pressure with which blood is pumped throughout the body. When elevated, blood pressure will damage the arteries, leading to injury of many important organs, including the kidney, heart, brain, and eyes.

What can we do to lower blood pressure? We generally have two major options: (1) lifestyle modifications, and (2) anti-hypertensive medications.

Key lifestyle changes include:

1. Reduction in salt intake: Hypertension Canada recommends reducing salt intake toward 5 g of salt per day (2 g of sodium).

2. Exercise: 30 – 60 minutes of moderate intensity aerobic exercise (such as walking, jogging, cycling, or swimming)/day for 4 – 7 days/ week

3. Weight loss

It is important to remember that each of these lifestyle changes is individually as effective as a medication.

We have at our disposal many medications to lower blood pressure. The specific medication that we suggest for you will depend primarily on the other medical conditions that you have, as well as how long you have had your transplant. We will have a discussion with you about each choice. It is important to remember that some blood pressure medications need to be temporarily held when you are sick with nausea, vomiting, or diarrhea, including: diuretics, ACE inhibitors, and angiotensin receptor blockers. Other medications (eg. diltiazem) can raise your cyclosporine and tacrolimus levels, or reversibly increase your blood creatinine levels (eg. diuretics, ACE inhibitors, and angiotensin receptor blockers). Talk to your nurse and/or doctor if you would like more information.

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XenotransplantationDr. Ramesh Prasad

Xenotransplantation is the transplantation of organs across species. Although transplants between human beings are quite successful, we always strive to do better. We already transplant tissues such as heart valves from pigs into human beings. The long-term results from implanted heart valves are excellent. Yet it is still impossible to perform organ transplants from another species into human beings. Organ transplants from animals reject immediately and vigorously. Xenotransplantation is presently far from being a solution to the organ shortage.

Some studies report limited success in transplanting organs from one animal species to another. One might think that it will be possible to transplant the corresponding organ from an animal, if it is of the right size and shape, and appropriately processed to ensure it transmits no infections. There is a larger supply of organs from certain animal species other than humans and fewer ethical concerns with which to contend. Xenotransplantation was attempted for a short while in human beings, with disastrous results. There is currently an international moratorium on human xenotransplantation. Xenotransplantation remains a major obstacle to transplantation science.

Clinicians have transplanted non-human organs only from baboons so far, because baboons are primates, and have a closer shared ancestry than other available animals of comparable size. Clinicians selected baboons over chimpanzees as donors for the initial xenotransplantation procedures because baboons have tails while chimpanzees do not, and so it was felt that using baboons was less likely to raise ethical objections to xenotransplantation. Pigs are the only other animals seriously considered as a candidate for a supply of organs, because they are more readily available than baboons, and are of comparable size. Genetic engineering on pigs minimizes the impact of their organs on immunity. However, there are insurmountable limits to technological advances imposed by the differences in species physiology. It will always be impossible to transplant organs from reptiles and fish because they are just too different.

We do not have specimens of Homo neanderthalis or other Homo species, closely related to human beings, for us to study xenotransplantation. It is not known if all the barriers to xenotransplantation resulted from evolutionary divergence. Evolution anticipated xenotransplantation even less than regular transplantation. It is, after all, in a species’ best interest to be poisonous to other species (for example, various plants and frogs are quite poisonous if consumed). Species incompatibility serves as protection to one species against another species. A failure of human xenotransplantation will greatly benefit pigs.

Another major concern regarding xenotransplantation is the transmission of infection. Concerns about infection from xenotransplantation have quickly overtaken concerns about rejection. It is possible to breed pigs without bacteria, fungi, and parasites that can cause disease in human individuals. But porcine endogenous retroviruses (PERV) live in almost all pig cells, and are present in highest concentrations in solid organs such as kidneys. PERV is capable of infecting human cells. The consequences resulting from the transmission of PERV to humans through transplantation are unknown. The viruses by themselves can induce immunosuppression. Eliminating galactose-α 1,3 galactose in pigs to eliminate rejection of the transplant can make PERV even more infectious. Unwanted immunosuppression can be very harmful, since it may promote secondary infections and cancer. Furthermore, viruses that are harmless in one species can be quite harmful in other species. Simian retroviruses crossing over from chimpanzees into humans may have slowly adapted into becoming the group of human immunodeficiency viruses, causing AIDS.

Even though it is impossible right now, the transplant clinic would be pleased to answer any questions you may have about transplants from animals.

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Caputo Family Fundraising Event for St. Michael’s Hospital Kidney Transplant ProgramGalo Meliton, RN, C Neph (C), Senior News Correspondent

For a second year in a row, Angelo and Maria Gwen Caputo and family held a fundraising dinner and dance event on Saturday, April 1, 2017 in Woodbridge, Ontario toward the Kidney Transplant Program at St. Michael's Hospital. The event was attended by a bigger crowd than last year's event. The Caputo family graciously donated the funds raised at the event that exceeded last year’s donation.

Angelo and Maria started the evening describing their journey in kidney transplantation thru the National Kidney Paired Donation Program. I was privileged to have been the guest speaker on behalf of the St. Michael's Hospital Kidney Transplant program for a second year in a row.

I had the opportunity to highlight the milestones the St. Michael's Hospital Kidney Transplant program has achieved to date, and that in less than 2 years, we will be celebrating our 50th Anniversary!!!

We would like to thank the Caputo family and all who attended this wonderful event.

Transplant Team Goes for a Field Trip to the Histocompatibility Lab Galo Meliton, RN C Neph (C), Senior News Correspondent

In ensuring that the staff in the kidney transplant clinic at St. Michael’s Hospital is kept up to date with the current state of the art in the science and technology involved in kidney transplantation, the team recently went on a field trip to the Histocompatibility lab.

Two groups went in turn, with the staff at the laboratory graciously hosting the educational sessions. The Histocompatibility laboratory is a key part of the risk assessment involved in transplantation. Not only do they do the genetic testing on the potential kidney recipient and donor, but they also identify if the potential kidney recipient has pre-formed antibody against their potential kidney donor; they stratify the potential immunological risk (risk of transplant SMH Pre Transplant Assessment Team with staff from HLA lab Alice

rejection) prior to the kidney transplant occurring. Van Oosterwijk (2nd from left) and David Kramer (3rd from the right)

The team went on a similar trip in the past, but since several new staff members have recently come on board, the team felt it fitting to go back and learn from the experts. “With the technology and science evolving so fast in front of our eyes, it is imperative that we keep up with times, regardless of how long we have worked in this clinic”, said Dr. Ramesh Prasad, Medical Director of the Kidney Transplant Program at St. Michael’s Hospital.

The transplant team is grateful to the staff at the Histocompatibility laboratory for their time and sharing their knowledge despite their busy schedule.

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What are allo-antibodies?Dr. Jeff Zaltzman

Patients awaiting a kidney transplant undergo testing at the time of listing and every 3 months while on the wait-list, for something known as “PRA testing”. Patients who have a living donor, or those on the national Kidney paired donor registry undergo a similar test at the time of listing. What is PRA, and why is it important? PRA stands for Panel Reactive Antibodies and the current terminology is cPRA, or calculated Panel Reactive Antibodies. Our immune system defends us against a number of internal and external insults including: infections, malignancies, wounds. Occasionally the immune system can attack the host as in the case of autoimmune disorders. The immune system is always primed to attack and reject the transplanted kidney.

One of the components of the immune system is a type of white blood cell known as B-lymphocyte. It is this cells that makes antibodies. Antibodies are an important component of the immune system as they are primarily involved in helping us fight off infections. As an example, when we get vaccinated, our immune system recognizes the altered (safe) virus or bacteria, and in response, our B-lymphocytes make antibodies and develop a memory response against the infecting agent. If we are then exposed to the actual infection, our antibody production increases substantially to help fight off the infection.

In solid organ transplantation, we need to try and control many different aspects of the immune response in order to prevent rejection of the kidney. The most important first step is to recognise the immune risk before transplant. Some of us have antibodies which are directed against other human beings. These are referred to as allo-antibodies. Allo-antibodies most often develop in a person who has been exposed to other human cells or tissues. Most commonly this can occur following blood transfusions, previous organ transplant and pregnancies (women have more allo-antibodies than men). The cPRA test measures the amount of allo-antibodies and is expressed as a percentage from 0-100%. Since these antibodies are directed against other human tissue known as HLA antigens, they could therefore be directed against a donor kidney.

As described earlier, the cPRA is tested every 3 months while potential recipients are on the waiting list for a deceased donor kidney, and when there is a living donor. In addition to understanding the cPRA, it is important to know the antibody specificities. This means identifying the exact antibody types that go into calculating the cPRA. Each transplant

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program is aided by a very special laboratory known as the HLA lab. For each recipient, this lab determines the cPRA and the allo-antibody specificities. Why is this important? If you refer back to the vaccine example above, you will note that if the B-cells already have made an antibody to a vaccine, then when the person is exposed to the infection, the immune system is primed and can attack and destroy the infecting virus or bacteria very quickly. If a potential transplant recipient already has an antibody in their system specific to the transplanted kidney, then if that kidney is transplanted, it can be rejected very quickly and even with the best anti-rejection medications, and the kidney may be lost. Therefore the first rule of transplant is NOT TO TRANSPLANT A KIDNEY TO WHICH THERE ARE DONOR SPECIFIC ANTIBODIES. The cPRA provides an estimate of the likelihood of finding a transplantable kidney for any potential recipient. If the cPRA is 0%, then in theory, all blood group compatible kidneys (100%) should be transplantable. If the cPRA is 25%, then approximately 75% of kidneys in the population would be available. If the cPRA is 75%, then only 25% of kidneys are transplantable. If the cPRA is 100%, it becomes very difficult to find an acceptable kidney for that recipient. Knowing the specific antibodies, allows us to transplant a kidney that is safe. This means a donor kidney that does not have the antigens that are recognised by the recipients’ antibodies. This is how we match kidneys. At the time of transplant, or earlier in the case of a living donor, the HLA lab also does a test known as a “cross-match” that also helps to determine if the recipient has any pre-formed allo-antibodies against their donor’s kidney.

Following transplant, all patients must take anti-rejection drugs, as it is important to deal with ameliorating all aspects of the immune response, not just the antibody portion. If, however patients skip medications, then they are at risk for rejection. Some but not all rejections, involve the B-lymphocytes and their antibodies. These latter are the most difficult to treat, and unfortunately pose the greatest risk to the transplanted kidney.

About 20% of transplant patients may develop allo-antibodies against the transplant at any time. While this can happen in anybody, patients who skip their ant-rejection medications, or adjust the dosing without instruction from the clinic, are at greatest risk. The single biggest reasons that kidney transplants fail is because of allo-antibodies which develop after transplant and lead to a slower but none the less progressive rejection for which there are no good therapeutic options. Therefore adherence to the prescribed transplant medications is currently the best available option for keeping your kidney for as long as possible.

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Post-Transplant Chat: Anemia after Transplantation Sarah Mattok, RN, Fernanda Shamy, RN, Jennie Huckle RN, Galo Meliton, RN, Kevin Bradley, RN

1) I’m told I’m anemic. What is anemia?Anemia is when people have a low hemoglobin level in their blood (less than 120g/L for women and 135g/L in men). Most patients with chronic kidney disease have anemia. The hormone called erythropoietin is made by the kidneys. It tells the bone marrow to make blood, and it may no longer be made by the sick kidneys.

2) Is anemia common after transplantation?Yes, anemia is common after transplant. There is some bleeding during surgery and many people already have anemia before the surgery because of kidney failure. After the transplant, the new kidney may not yet be making enough of a hormone called erythropoietin. The new kidney usually starts making enough erythropoietin after a few months, and the anemia goes away.

3) What are the symptoms and signs of anemia?Hemoglobin is the part of the blood that carries oxygen around the body. If you don’t have enough hemoglobin, you may feel weak, tired, and your heart may beat faster to try to deliver more oxygen to the body. Feeling cold and or breathless may also be symptoms of anemia. You may look pale to others. Your tongue, conjunctiva, and fingernails may look pale.

4) What are the common causes of anemia?There are many causes of anemia. In general terms, anemia can be cause by losing blood, breaking down too much blood, or not making enough blood. Some of the common causes are kidney disease, low iron or vitamin B12 levels in the blood, malnutrition, or medicines. It can also be caused by losing blood during surgery, heavy menstruation, or bleeding in your bowels or stomach. Chronic infections and too much parathyroid hormone also make your body resistant to erythropoietin, causing anemia. A mild anemia is common and normal during pregnancy. In some parts of the world, intestinal worm infestations are the most common cause of anemia.

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5) Are there other conditions to worry about when I have anemia?Anemia can cause your heart to work harder. If you already have a heart condition, it may make it worse. Sometimes anemia is a sign of other problems. Special tests may be needed to find out what the cause is. Keeping your health preventative tests (for example, stool tests for blood) up to date will

help your physician narrow down the possible causes for your anemia more efficiently.

6) How is anemia investigated?Blood tests, stool tests, x-rays, or ultrasounds are commonly done to find the

cause of anemia. You may also need to see a blood specialist, or hematologist. Some tests are repeated to look for trends in the hemoglobin and other tests.

7) Do I have to see a blood specialist for anemia?Not usually, but it depends on the cause. Most anemia can be managed by your family doctor with some help from the transplant clinic if needed.

Some people need to see a blood specialist for more tests, such as a bone marrow biopsy.

8) Is there a way to prevent anemia?For many people, a healthy diet and medicines or supplements can help to

prevent anemia. Talk to your doctor about what would work best for you. You may also consult with the dietician and pharmacist in the transplant clinic for additional advice.

9) How is anemia treated?The first step is to identify and treat the cause. For example, if you are

bleeding, then treating the bleeding to stop it will usually fix the anemia. Medicines can also be used. Low iron levels can be treated with iron pills or

rarely, intravenous iron. If your kidney is not making enough erythropoietin, then your doctor may prescribe an injection medicine called Aranesp® or Eprex® to help replace this hormone and treat the anemia. Occasionally one or more of the transplant medications is the cause, in which case the dose will need to be adjusted or the medication itself changed to a different one. Anemia is an important medical issue and your physician and pharmacist are your partners in your treatment plan.

10) My anemia has been treated. Can it happen again?Yes it can happen again, depending on the cause of the anemia. If you had bleeding, anemia may happen again if the bleeding recurs. If you don’t have enough iron or erythropoietin hormone in your body yet and you stop taking the prescribed medicine, anemia may come back. Always follow the recommendations of your doctor.

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Home Care after TransplantationSarah Mattok, RN, MN, CNeph(C)

There may be times after transplant where you need extra health care support in your home or community. Home care may be available to help during this time. Home care is focused on optimizing health and independence, supporting you through a health care transition (such as from hospital to home), or providing care after an illness.

The most common reasons for people to need home care after transplant are to care for wounds or to give special intravenous medicines. Some people can also be assessed to see if

they need other services.

The Community Care Access Centres (CCACs) coordinate home care agencies in the community. CCACs were created in 1996 by the Ontario government to provide a first point of contact for public access to government-funded home care, community services, and long-term care homes. Over the summer of 2017, the CCACs will merge with the Local Health Integration Networks (LHINs). The name will change but the services will remain the same.

If you need health care at home, the transplant doctor or nurse practitioner will fill out a referral to the CCAC. Once the referral

has been received, you will be contacted by a coordinator. Coordinators are regulated health professionals (such

as nurses, social workers, physiotherapists) and this coordinator will be your contact person for your

local CCAC.

Your CCAC coordinator will ask you questions to find out more about your situation. They will

discuss your options and come up with a plan to best meet your needs. Some services are provided in your home, and some are provided at community clinics. For example, if you need

to receive an IV medicine, it may be better for you to receive it at a clinic rather than in your home.

If you think you or someone you care about could benefit from CCAC services, you can

make a referral yourself. Call 310-2222 (no area code required) or go to healthcareathome.ca

to find out more.

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Information on Lifelabs (Blood work for St. Michaels Post Kidney Transplant Recipient)

Regular blood tests are important for monitoring your health after kidney transplant. We’d like you to know of some changes in how you do blood tests.

The post-transplant clinic at St. Michael’s has partnered with LifeLabs. For all blood work done at a LifeLabs location, we can now automatically download the results to our office. We will be able to see your blood test results sooner and in a better format.

This change will impact you in 3 ways:

1. We STRONGLY ENCOURAGE you to do all blood tests ordered by the transplant clinic at a LifeLabs location. You can find the location nearest you at http://locations.lifelabs.com/. This helps us review your results faster and care for you better. You do not need to sign up to have your results downloaded to our office. It will be done automatically. If there is no LifeLabs location near you or you choose to use a different lab, we will continue to receive your results by fax in the old slower method.

2. Please have blood work done 1 WEEK BEFORE all clinic visits. Having up to date results at your visit helps us make informed decisions when adjusting your treatment regimen. You can time your scheduled blood tests to fit with the clinic appointment. For example, if your appointment is August 1 and you do blood work every 3 months in Jan, April, July, Octo-ber, then time your July blood work so it is 1 week before clinic appointment. We encourage you NOT to do blood work on the same day as your clinic visit. We cannot see results from same day blood work at the time of your visit.

3. The BK virus blood test can only be performed at St. Michael’s lab. If you are less than 5 years post-transplant, please continue to come to St. Michael’s at the recommended interval for BK test (see attached schedule). This test cannot be done at an outside lab.

4. We have included a schedule of when routine blood work is needed based on how long you have had your transplant. Please continue to follow this schedule unless otherwise advised by your transplant doctor or nurse.

If you have any questions or concerns about the information in this letter, please do not hesitate to contact us at 416-867-3665 option 2. We would be happy to discuss your individual situation with you.

Sincerely,

Your post-transplant team

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A Personal Experience as a Patient Family Advisor

Written by: Judy Kashfi, member of hemodialysis patient and family advisory councilEdited by: Lucy Chen, case manager; Sharon Lee, social worker

It was a Sunday evening when my husband gasped to me, “call 911, I can’t breathe”. This was the shocking start to a whirlwind journey during which my husband was admitted to the intensive care unit, got diagnosed with kidney failure, and started on dialysis. To this day, we only know that it was a virus that attacked his kidneys. After the initial shock wore off, our new life unfolded with many questions:

• Is there a way for me to better support my husband during dialysis?• Is it possible to get a chef to talk to us about cooking ideas?• Can there be an orientation program to help us adjust?

One day, I was sitting in the hallway and saw a bulletin for the hemodialysis patient advisory council. My husband and I decide to get more involved and join. At the meeting, we meet other patients, the manager, a nursing supervisor, social worker, and sometimes a dialysis nurse. The meetings are structured. There is a platform for discussing and addressing concerns, problems, issues and ideas. The PAC is an avenue to allow your voice to be heard, as well as learn and understand from the hospital’s perspective.

It’s comforting knowing that as patients and caregivers, we collectively share certain needs and concerns. We all come to the table representing different ages, cultural backgrounds, educational levels and healthcare experiences. This synergy allows us to generate new ideas to help improve the care we receive. Our group works on issues that affect the overall patient experience. Lately, one of our many projects is examining the availability, comfort and safety of equipment used in carrying out treatment. In turn, we are provided with updates from those most knowledgeable about the topic and we give our feedback about processes taking place. In this sense the PAC works like a two way street. It is an opportunity for patients and their families to partner with the health care team to improve the patient experience.

Congratulations to Dr. Ramesh Prasad!

Dr. Prasad has been promoted from Associate Professor to Full Professor at the University of

Toronto, effective July 1, 2017.

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A Thank You

To The Team at St. Michael’s Hospital: What’s it like to change lives every day? While we understand some moments are more challenging than others, we hope you know that what you do makes a lasting imprint of the lives of those you care for. We benefited from the gift of your time, support, attention and advice over the last several years.

In 2012, we lucked out when there was a cancellation for an Angiogram. Patient, (James) Bryan Cleveland came in for what he thought would be a routine test, only to discover his left main artery was 100% blocked.

Immediately admitted, Bryan underwent successful Bypass Surgery in 2012. He transitioned onto Dialysis shortly after the surgery when his kidneys failed. You provided years of attention and support as he learned the intricacies of Home Dialysis. And you were there for us again when we suffered a setback in 2014 due to a severe infection. But you helped him get back onto Home HemoDialysis in 2015.

In October 2016, we finally crossed the finish line and underwent a kidney transplant. Bryan’s Daughter Christina was the donor. During our stay in hospital, you treated us like we were your own family. Checking in, attending to our needs, pushing us through recovery and celebrating our progress. It's been a long road for our family, but with your support, we made it through. We wanted to share our thanks with you.

“Angels live among us. Sometimes they hide their wings, but there is no disguising the peace and hope they bring.”

To our St. Michael’s Angels – we are forever grateful to all of you for your kindness and care.

The Cleveland Family

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Become a Patient and Family Advisor at St. Michael’s

You sometimes notice things we don’t. Things like how your care is provided, and how we could be doing better.

Play a valuable role in helping to ensure the best possible patient experience at St. Michael’s.

Become a Patient and Family Advisor. Visit stmichaelshospital.com/patientandfamilyadvisors

for more information.

For more information, please contact [email protected]

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Interested in becoming a patient advisor for Kidney Transplant Clinic?

We are currently seeking patients before or after transplant, caregivers, kidney donors, and community member to join our group.

30 Bond Street, Toronto, ON M5B 1W8 Canada416.864.6060 stmichaelshospital.com