Transplant Digest
FALL 2019/WINTER 2020 ISSUE NO. 27
Rendering of the new Ambulatory Kidney Clinic
The New St. Michael’s Transplant and Kidney Care Clinic Dr. Jeff Zaltzman As we celebrate 50 years of kidney transplantation at Saint Michael’s hospital, we also look forward to the future. It has been a long-term goal to have a revamped, modern and larger space for our transplant program. In the 1970’s the St. Michael’s transplant program was following approximately 300 post-transplant recipients. Today, that number is closer to 1800. We see over 500 new potential kidney transplant candidates annually. The current transplant space on 61 Queen St. 9th floor is shared with nephrologists, urologists, and research personnel. Our pre- transplant and living donor teams are spread out on 2 additional floors in the building. We are very crowded! We have been fortunate to have new space made available for the entire transplant program, including the pre-transplant assessment team, the living donor program, and the post- transplant clinic. In addition, this space will also house our kidney care clinic. This new space will be on 61 Queen 8th floor. Continued on page 2
In this issue... •
The New Transplant and Kidney Care Clinic
•
From the Editor’s Desk
•
Kidney Scarring
•
Measuring Heart Function with BNP
•
Edema
•
St. Michael’s Kidney Transplant Program Celebrates 50th Anniversary
•
Highlight of the 50th Anniversary Celebration
•
Canadian Blood Services and Transplant
•
Post-Transplant Chat: Work after transplantation
•
Another Successful Year for the High School Outreach Initiative
•
Academic Transplant Nursing at St. Michael’s
TRANSPLANT DIGEST - PG 1
From the Editor’s Desk
St. Michael’s Hospital Renal Transplant Program
Dr. Ramesh Prasad Days come and days go. Months and years come and go by as well, scarcely noticed due to life’s ever-increasing speed. I have a magnet on my filing cabinet, a quote by Mahatma Gandhi. “There is more to life than increasing its speed”. Sometimes, we need to just sit back, take stock of our situation, re-examine our priorities, and look back with pride at our achievements. Since the last issue of Transplant Digest, our Kidney Transplant Program did just that. We celebrated our 50th Anniversary along with our staff, referring centres, senior hospital executives, and patients along with their families. The current issue is dedicated to this momentous event. Now back to regular business. This issue contains articles on academic transplant nursing, our high school initiative, kidney paired donation and the highly sensitized patient program, our new clinic space, going back to work after transplantation, edema and heart function, and kidney scarring. A transplant word search will hopefully entertain you in the waiting area. I hope you share my excitement about this and future issues of Transplant Digest as we enter the third decade of the new millennium.
(across the hospital) 61 Queen Street 9th Floor Toronto, Ontario, M5C 2T2 Phone: (416) 867-3665 Please send your comments or suggestions of topics for future publication to: Meriam.Jayoma@unityhealth.to 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.
The new clinic story continued from page 1 The transplant research team will be moving to 61 Queen 2nd floor. This state-of-the-art facility will be equipped with right sized exam rooms, a modern reception and patient waiting area, a procedure room, and patient meeting rooms for private patient consultations. In addition, there will be a patient area with access to computers and other workspace for patients. At St. Michael’s we carry out clinical research with a goal of enhancing the lives and outcomes of kidney transplant recipients. You, the transplant patients are at
the forefront of this research. Throughout the years, the St. Michael’s kidney transplant research program has made discoveries in varied areas such as: immunosuppressive medication, understanding cardiac issues after transplant, vaccinations and infection-related problems to name a few. We are looking at better, non-invasive ways of diagnosing kidney transplant scarring, with hopes of preventing this issue in the future. The new transplant clinic will allow us to continue addressing transplant issues through research in an enhanced environment. The architectural plans have been submitted, and renderings have been approved. We are in the middle of a capital campaign through the St. Michael’s Hospital Foundation to raise $5 million to build this long-awaited, important clinic. Our goal is to provide the state-of-theart care for our transplant patients in a modern facility to match. As you read this article, please consider a donation to the St. Michael’s Foundation. This new clinic is for you, our valued transplant patients.
Rendering of the new DCCP exam room
PG 2 -TRANSPLANT DIGEST
St. Michael’s Hospital Foundation 416-864-5000 Website: Onefocus.ca or st.michaelsfoundation.com
Kidney Scarring Dr. Darren Yuen
Scarring is a major cause of kidney failure, unfortunately affecting your native kidneys (the ones you are born with), as well as the transplant that you receive. The only clinical evidence we have that scarring is happening in the kidney is a slow, steady rise in your serum creatinine that reflects decline in kidney function. Only a biopsy can prove scarring at the present time, although ultrasound and other imaging techniques (such as MRI) can provide important clues that scarring is present. Even then, the scarring is usually patchy, not present equally throughout the kidney. This makes scarring difficult to manage, because we often don’t know how much there is and where. Many cell signals are activated inside the kidney to cause scarring, from causes such as rejection, infection, high blood pressure, or the kidney working too hard (such as from being too small relative to body size). Unfortunately, currently no safe and effective anti-scarring treatments exist, even if we can prove there is scarring present. All that
we can do is manage the risk factors for scarring, not the process itself. Work being done at St. Michael’s Hospital is leading the way in trying to figure out a way to prevent scarring from damaging your kidney. St. Michael’s Hospital researchers (Dr. Darren Yuen and Dr. Richard Gilbert) are looking at stored kidney biopsies to understand the genes that cause scarring in the kidney. Drs. Yuen and Gilbert are working with a group of researchers across Canada who are using biopsies that have already been collected over the years to see what genes cause scarring and loss of kidney function. We hope to use this information to produce new anti-scarring drugs that can prevent kidney scarring. Our ultimate goal is to prevent kidney scarring from developing, to prevent kidneys from failing. This work is funded by a multi-million dollar grant from the Canadian government, and has started this year. Stay tuned!
TRANSPLANT DIGEST - PG 3
Measuring Heart Function with BNP Dr. Ramesh Prasad You may have noticed a new blood test on your lab requisition when doing routine blood testing at St. Michael’s. This test is called NT-proBNP, or BNP for short (there is a subtle difference between the two that is not important clinically). BNP stands for B-type natriuretic peptide (BNP). BNP is a hormone produced by your heart.
diuretics do not help that situation. Monitoring the BNP level along with the creatinine will allow your team to help keep both the heart and the kidney happy, because this heart-kidney balance can be difficult to achieve especially early posttransplant.
BNP is released into your bloodstream in response to changes in pressure inside the heart. These changes can be related to heart failure and other cardiac problems. The blood level of BNP rises when heart failure develops or gets worse, and levels goes down when heart failure improves. In most cases, BNP is higher in patients with heart failure than in those with normal heart function. Therefore, if you develop shortness of breath and have too much salt and water in your body, the BNP level will be higher. The BNP can be used to guide the use of diuretics to help remove the excess salt and water. Other conditions like pneumonia that also cause shortness of breath do not cause as much of a rise in BNP, and
Importantly, the cost of BNP test is not covered by outside labs. If you have any questions about getting a BNP test done or understanding your BNP result, please contact the Transplant Clinic.
Edema Dr. Ramesh Prasad Edema, also called water retention or swelling, happens when fluid collects in spaces around tissues and organs, called the interstitial space. Swelling is most noticeable in the lower legs, especially later in the day, due to gravity. However, swelling can also be seen in the hands, abdomen, and chest. The skin might look stretched and shiny, the legs might hurt, and there might even be stomach fullness or difficulty breathing. Not only is swelling uncomfortable, it can be a sign of a serious underlying medical condition. It can rarely even be life-threatening. Generally speaking, there has to be at least 3 or 4 litres of extra water in your body for swelling to become visible. Edema can be caused by poor circulation in the legs, when blood cannot be efficiently pumped back to the heart; blood clots that obstruct the leg veins; pregnancy and around the time of menstrual periods; and after long flights. In kidney transplant patients, common causes include the extra fluid you are given right after the transplant to help the new kidney to work, certain blood pressure medications, poor kidney function in which salt removal is reduced or protein is lost in the urine, and poor heart function.
PG 4 -TRANSPLANT DIGEST
The Transplant Clinic takes edema seriously, especially if it is new or won’t go away. You may undergo extra blood and urine tests, get a chest x-ray or abdominal ultrasound, or may even get a kidney biopsy. The underlying cause may be treated with added anti-rejection medications, your blood pressure medications might be changed, and you may be given specific dietary advice, such as to reduce your salt intake further. You might be prescribed diuretics, commonly called “water pills”, which are actually “salt removal pills” if dietary salt restriction is not enough. Other measures might include compression stockings, special exercises involving raising your legs, or taking anti-clotting medications if you have a blood clot. Remember though, that all edema does not need to be treated. You can help to prevent edema during long travel by standing up and walking every 1-2 hours, avoiding smoking before a flight, drinking plenty of fluids while avoiding alcohol, wearing loose clothing, and not taking sleeping medicines that prevent walking around in a plane. Point and flex your feet, and bend your knees as often as possible.
We can reflect back on 2019 as a year filled with a number of special occasions to celebrate our 50th Transplant Anniversary. We had a Living Donor Recognition Event to honour our living donors from the past three years. The Patient and Family Advisory Council advised health professionals on care issues that matter to them and how to integrate their recommendations into practice. We had a special event for patients and families that highlighted some of our talented transplant recipients who are living life large with their renewed health. There was singing, flamenco dancing and speeches to name a few. We had a team social event for staff to celebrate our successes and the collaboration/collegiality that makes our team so special. With exceptional assistance from our communications department, we embraced social media to share #Txanniversary on our hospital social media pages. We showcased heartwarming stories from staff, living donors and transplant recipients. And lastly we had a dinner with our team and external partners to acknowledge and celebrate our program successes. Dr. Ramesh Prasad and Dr. Jeff Zaltzman both spoke about our program successes past, present and future. The event gave us an opportunity to thank our external partners for their contributions to our success and for
CONGRATULATIONS!!!
Michelle Gabriel, RN, BScN, MSc MSED, CNeph(c) is now the interim Clinical Leader Manager for Home Dialysis & Multi Care Kidney Clinic
KID
Maureen Connelly, RN
T AN
St. Michael's Transplant Program TRANSPL Y Celebrates 50th Anniversary NE
Years
1969-2019
rsary e v i n An making such a difference in the lives of our patients. Our external partners included representatives from Trillium Gift of Life Network, the Kidney Foundation and from dialysis centers and kidney care clinics. We had posters highlighting staff and patients stories. We also launched a green ribbon quilt to acknowledge organ donation. The quilt was generously made and donated to us by a transplant recipient from the University Health Network- Susan Kuentzel. It was truly wonderful evening to consider where we have been and what opportunities lay ahead in the future. Our motto of “People Transplanting People” and vision“Best Options, Best Outcomes and Best Experience” was evident and we all came away inspired to be part of future successes. We would like to acknowledge and thank Astellas for their generous support for this event.
SAVE THE DATE! June 12, 2020
Sarah Mattok, RN, MN, CNeph(C) has accepted the Care and Transition Facilitator role for Kidney Transplant and Diabetes Clinic
WELCOME TO THE FOLLOWING NURSES!! Ellenica Hicks is the new post-transplant nurse Michelle Ensgon is the new coordinator for recipient with living donors.
Stay tuned for more details!!! TRANSPLANT DIGEST - PG 5
Y TRANSPL E N
T AN
KID
St. Michael’s Kidney Transplant Pro
Years
1969-2019
rsary Annive
PG 6 -TRANSPLANT DIGEST
gram Celebrates 50th Anniversary
TRANSPLANT DIGEST - PG 7
Canadian Blood Services and Transplant Michelle Gabriel, RN
What role does Canadian Blood Services play in Organ Donation?
Is Canadian Blood Services involved with wait list/deceased donor allocation?
Canadian Blood Services works with the organ and tissue donation & transplantation community to improve access to organ transplantation. They assist with the development of leading practices, professional education, public awareness and data analysis and reporting. They also manage clinical programs that support interprovincial sharing of organs.
The Highly Sensitized Patient (HSP) Program was established by Canadian Blood Services in 2013. Canadian Blood Services in collaboration with provincial and territorial governments, and organ donation and transplantation programs around the country, created the HSP program to increase transplant opportunities for patients needing very specific matches from deceased kidney donors.
What is kidney paired donation (KPD)? Kidney paired donation is a program that matches transplant candidates with suitable living donors. It gives people the chance to become a living kidney donor while ensuring that someone they want to help receives a needed kidney, even if they are not a direct match. Canada’s Kidney Paired Donation program is run by Canadian Blood Services, working with the living kidney donation and kidney transplant programs across the country.
How many transplants have been completed through the KPD program?
Through the HSP Program, this group of patients now has access to a larger national donor pool, increasing the chance of a match. Prior to HSP, kidneys from deceased donors stayed within the province of origin – now, when a deceased donor anywhere in Canada has two eligible kidneys, one kidney is provided to the HSP program for matching to potential recipients across the country. Kidneys are shared between provinces using the Canadian Transplant Registry (CTR), which tracks all HSP matches, offers and transplants.
KPD Sucess...to November 1, 2019 67
From Paired Exchanges
217
From N-Way Exchanges
432
From Domino Exchanges
221 Chains
34 Paired Exchanges 55 N-Way 132 Domino
PG 8 -TRANSPLANT DIGEST
Post-Transplant Chat - Work after transplantation Sarah Mattok RN, , Galo Meliton RN, Jennie Huckle RN and Sharon Lee MSW
Is it necessary to take time off work after transplantation? Yes. You will need time to rest, heal, and allow your body to adjust to life with a kidney transplant. You will also be coming to St. Michael’s at least twice per week for the first month to do blood tests and for appointments.
What is the maximum time I am allowed to take time off work? Most people can go back to work three months after the transplant. If there are special circumstances and you think you need more time than this, please speak to your doctor at your clinic visit. If the reason you need more than three months off is NOT related to your kidney transplant, you should speak to your family doctor about this.
What is the minimum time I should take off work? This is different for everybody. Depending on the type of work you do, you may be able to go back to work once you feel well enough to do so. Some people are also able to modify their work or work hours to go back to their usual routine slowly.
consider applying for Employment Insurance Sickness Benefits. Employment Insurance Sickness benefits will cover you up to 15 weeks if you are temporarily not able to work because of illness. Service Canada cannot tell you how much you could receive until they process your application For most people, the basic rate for calculating EI benefits is 55% of your average insurable weekly earnings, up to a maximum amount This means that one can receive a maximum amount of $562 per week EI sickness benefits can be paid for a maximum of 15 weeks. Long term disability plans may be available to you through your employer if you are unable to work for an extended period of time Canada Labour Code does not require employers to have a LTD plan in place for their employees. Please check with your HR department.
Should I do my paperwork for time off before or after the transplant?
For the first three months after transplant, you should not lift anything more than 10 pounds. For most people, there are no restrictions on what they can do after the first three months post-transplant. If you have specific concerns, please talk to your doctor at your clinic visit.
If you have paperwork to be filled out for your employer, please talk to your doctor or social worker about filling this out. If you have a living donor, and you know the date you will be off work, we may be able to fill it out ahead of your surgery. If you are waiting for a deceased donor, you will not know when you will need to be off work. In this case, bring your paperwork to your visit in post-transplant clinic.
My work involves travel. When can I travel again?
What if I need to extend my time off work?
We recommend that you do not travel outside of the country for the first year post-transplant. You may be able to do short trips within Canada earlier than this. You should check whether your employer can provide you with travel insurance in case you get sick outside of Canada. Talk to your doctor at your clinic visit about specific trips you wish to take.
If there is a valid transplant-related medical, surgical, or psychosocial reason for needing extra time off work, the transplant clinic can provide you with documentation for this. If the reason(s) are not related to your kidney transplant, you should speak to your family doctor about this.
My work involves a fair amount of physical exertion. What should I tell my employer?
Continued on page 11
Will I receive any payment for the time I take off work? Talk to your Human Resources Department at work. Find out what kind of sick time or short-term disability leave is available to you If short term disability is not offered by your employer, TRANSPLANT DIGEST - PG 9
Another Successful Year for the High School Outreach Initiative Galo Meliton, RN, C Neph (C) Chief News Correspondent The High School Outreach Initiative (HSOI) had another successful year (2018/2019). The HSOI is designed to convey the importance of organ and tissue donation and transplantation to youth (aged 16- 19) in the Greater Toronto Area, predominantly in the Toronto District School Board (TDSB) and the Toronto Catholic District School Board (TCDSB). The overarching goal is to create a culture of organ and tissue donation and increase registration rates in this age group through education and by encouraging the students to speak with their families. Part of what is conveyed to the students at these presentations is that every three days someone in Ontario dies because there is not an organ available, and that it doesn't have to be this way. One organ and tissue donor can save up to eight lives and enhance the lives of 75 others. These presentations provide secondary school students the unique opportunity to hear from world class healthcare professionals about organ and tissue donation and transplantation. In concert with the Trillium Gift of Life Network (TGLN), presentations are delivered by healthcare professionals from the three top tier transplant hospitals in Toronto: SickKids, University Health Network and St. Michael’s Hospital along with a donor family member, a living organ donor, or transplant recipient. Now in its 8th year, this year’s program highlights include a record breaking total of 92 presentations which were given at 42 different high schools across the GTA. A total of 19 new schools participated along with 23 pre-existing
schools in our roster. The 19 new schools represented 1 Dufferin-Peel District Catholic School Board (DPCSB), 4 Peel District School Board (PDSB), 1 Peterborough, Victoria, Northumberland and Clarington Catholic School Board (PVNCCDSB), 7 Toronto Catholic District School Board (TCDSB), 4 Toronto District School Board (TDSB), and 2 York Region District School Board (YRDSB) school. Out of the 92 presentations, assembly presentations totaled 28 consisting of between 50 - 450 students. With the goal of increasing the number of schools who have participated in these presentations, a total of 60% (21 out of 35 schools) of all TCDSB schools and 9% (9 out of 102 schools) of TDSB schools participated this year. This program’s organizing committee from the University of Toronto Transplant Institute in partnership with the Trillium Gift of Life Network would like to thank all the patient volunteers as well as the Health Care Professionals who did presentations this past year.
Transplant Word Search V
C
R
E
A
T
I
N
I
N
E
Y
V
B
S
C
I
N
I
L
C
R
N
B
Z
S
E
A
R
O
N
O
D
E
I
T
V
I
T
S
N
P
I
L
L
S
C
N
S
S
E
H
U
E
F
Q
U
E
C
E
I
Y
B
C
K
R
M
M
J
A
A
I
M
L
A
V
M
C
I
I
P
R
V
P
U
A
I
W
S
L
D
V
A
C
B
I
L
I
D
T
O
N
Y
J
K
H
H
C
E
D
E
R
U
X
E
L
P
B
Z
E
C
N
I
O
G
R
A
F
T
Z
X
R
T
S
W
D
R
U
G
L
E
V
E
L
PG 10 -TRANSPLANT DIGEST
WORDS Anemia BK Virus Clinic CMV Creatinine Dialysis Diabetes Donor Drug Level EBV Graft HBV
HCV Pill PLEX Recipient Research Simulect Sirolimus Stent Vaccine VZV Wound
Academic Transplant Nursing at St. Michael’s By Maureen Connelly RN The transplant program emphasizes patient care, teaching, mentorship and research. Many of our physicians are cross appointed as Professors or Assistant Professors at the University of Toronto while others are cross appointed to the Li Ka Shing Research Centre at the hospital. Our Program Director Jonathan Fetros, Clinical Leader Manager Dana Whitham, and Nurse Practitioner Tess Montado-Atin are also cross appointed at the University of Toronto. Transplant Coordinator Michelle Gabriel recently completed a Masters of Science in Health Education and Sarah Mattok completed a Masters in Nursing. The academic emphasis at St. Michael's in being a teaching hospital results in many students from across all health disciplines seeking opportunities to study/ work with us. Our patients are the recipients of patient care that draws on the expertise of well educated staff who believe in and embrace lifelong learning. We are grateful to our patients who have consented to having students participate in or observe their care. With this emphasis on ongoing learning, the clinic setting is one full of “teachable moments”. It creates a cultural norm of curiosity and ongoing learning. We all embrace opportunities to teach others and share our expertise.
One such opportunity came about when I received a call from a nurse in Jamaica who wished to come for an observership to our program. Andrea Mignott was recently appointed as the Organ Transplant Coordinator at The University Hospital of the West Indies. The transplant program is quite new and currently only doing living donor transplants. My colleagues and I gave her an emphatic yes to come visit our program. Andrea obtained her Bachelor of Science in Nursing from Ryerson University and her Masters in Nursing from the University of the West Indies. Andrea arrived in time to participate in our 50th anniversary celebrations, attend a seminar on Living Organ Donor Awareness and observe us with patients in the clinic setting. Andrea was able to meet a kidney donor and new transplant recipient while they were both in hospital. The kidney donor Sheldon and his kidney recipient were originally from Jamaica, They were delighted to see Andrea. It turned out their home towns were very close and they plan to visit the Transplant Program in Jamaica once Marlon is able to travel. It was wonderful to have Andrea visit with us and to share our expertise with her.
The Post-Transplant Chat story continued from page 9
I was on disability before the transplant. Can I continue this after the transplant?
I had my transplant many years ago. Can you help me take time off work again if I need it?
This depends on why you are receiving disability benefits. If the only reason was that you were on dialysis, once you have had a successful kidney transplant the government no longer considers you to be “disabled”. In this case, you may no longer qualify for disability benefits. This can affect your income as well as your drug coverage. Please ask to talk to the transplant social worker if you have questions about this.
If you need to take time off for an issue related specifically to your kidney transplant, it may be possible to provide you with documents about this. If you need time off for reasons that are not related to your transplant, you should talk to your family doctor about this. We can only fill out paperwork that relates directly to your kidney transplant.
Transplant Digest - Contact Information Dr. Ramesh Prasad – Editor Meriam Jayoma-Austria, RN, BScN, CNeph(C) Newsletter Coordinator
Transplant Digest
FALL 2019/WINTER 2020 ISSUE NO. 27
TRANSPLANT DIGEST - PG 11
FOCUS T H E C A M PA I G N F O R S T. M I C H A E L’ S T R A N S P L A N T AND KIDNEY CARE CENTRE
IMAGINE IF THE WORLD-CLASS CARE YOU R E C E I V E AT S T. M I C H A E L’ S H O S P I TA L C O U L D B E M AT C H E D B Y A N E W S TAT E- O F -T H E- A R T FA C I L I T Y.
THAT ’S THE PLAN. We are launching a $7 million fundraising campaign to build a physical space that provides greater comfort to our patients and enables us to invest in research that will stop kidney disease from impacting any more lives. We have the rare opportunity to build a new facility on the eighth floor. With your support, we will create the centre that our patients deserve. Please join us.
416.864.5000 | stmichaelsfoundation.com