Posts Tagged ‘Nephrotic Syndrome’
11 September, 2014
Janice Skot, President & CEO
Royal Victoria Regional Health Centre
201 Georgian Drive
Barrie, Ontario L4M 6M2
RE: Renal services at RVH
Dear Ms. Skot,
Have you ever had to undergo long-term treatment for an ailment like cancer, or dialysis for failing kidneys?
I have been a renal patient for approximately 30 years. I have been to a number of renal clinics, from the Hospital for Sick Children, to The Ottawa Hospital, to yours; and seen the various models, and services. What RVH currently offers is, in my opinion, both a blessing and a curse.
The other day I had to visit RVH to have a blood transfusion in the medical treatment clinic. It was a very nice clinic, with three nice nurses. At any other hospital, I could simply have had that transfusion during my dialysis treatment. I already spend upwards if 12 hours a week at medical treatment, I don’t really enjoy spending extra time on top of that, when a volunteer could simply have gotten into a cab, and brought it over to the dialysis unit. Or RVH could do this new, and novel approach many hospitals are practicing – by putting the dialysis unit in the main hospital.
Why is this not a priority?
In many ways, I love that the dialysis unit is separate. You’re saving me a ton of money on parking. But then you go and try to gouge me by paying to watch your TV. I haven’t spent a dime on it. (I choose not to watch it.) As far as I am aware, RVH is the only hospital in Ontario to charge its dialysis patients to watch TV. We have no choice but to be there three times a week, and you want to nickel and dime us?
Ultimately, however, Barrie as a city has approximately 135,711 residents, according to the 2011 census. Kingston, Ontario as a city has approximately 123,363. Kingston General Hospital has a renal transplant program. Why does RVH not have one? And don’t use us not having a University as an excuse. RVH could easily partner with the University of Toronto like you already have for the family medicine program.
As a result of this situation, I would like you and RVH to make renal services a priority. Start now to bring a transplant program to RVH in the next 5 – 10 years. At the end of the day, Ms. Skot, it’s go time!
Peter V. Tretter
P.S. Could you please do something about all those styrofoam cups that end up in the landfill? Perhaps by replacing them with paper cups that can be recycled? Thank you.
I have been a renal patient since the age of 6. I had chicken pox, and that lead my already diseased kidney’s
to not work. So I went on peritoneal dialysis. Every night while I slept, I had dialysis at home. I was doing ok but I wasn’t doing great. When you’re that age, you don’t want to take your tums (yuck!), or eat if you don’t feel like it.
So at the age of 8 I had my first transplant at the Children’s Hospital of Eastern Ontario (via the Ottawa General Hospital.) It was a great solution, I started eating more, and gaining weight. Unfortunately, I only had that transplant for five years. Fortunately, at the time you didn’t need to go back on dialysis to go on the transplant list, so a few months after I was placed on the list…
I got my second transplant. That was very fortunate, as I was in grade 6 at the time. Two years later I had to have a follow up surgery to repair the connection between my kidney and bladder. That kidney, thankfully, lasted 7 years. At this point my doctor’s started asking questions, mainly about why my kidney isn’t lasting the 10 – 20 years they expect.
I was born with Nephrotic Syndrome. You can click the link for more detail, but the laymen’s version is scarring on my kidney. The current theory is that this syndrome will continue to attack future kidney’s, meaning it’s possible I may only keep a kidney 5 – 10 years.
In 2002, I had my third transplant which also lasted 5 years. I am on the transplant list, to be one of a handful of people worldwide to have a fourth transplant, but so far I have been on the list for 7 years. I may have a long wait. Why? Due to the number of blood products (transfusions, transplants, etc) I have pretty much every antibody there is. So they are very careful which kidney they will match to me, to ensure it is a success.
This is why a living donor kidney would be most beneficial to me.
Living kidney donation has revolutionized kidney transplantation and many studies have confirmed the longer survival times for kidneys from a living donor. There are many other benefits of having a transplant from a living donor: (Source for this part.)
• Living donation eliminates the recipient’s need to wait for a transplant on the
• Short and long term survival rates are significantly better and provide a better outcome
than transplants from deceased donors. (On average approximately 20 years for a
kidney from a living donor, compared to 13 years for a kidney from a deceased donor).
• You know the donor, his/her lifestyle choices and history
• The kidneys almost always start functioning immediately, deceased donor kidneys can
take from a few days up to a few weeks to start functioning. (Recipient needs to return
• Shortens the waiting time for others on the waiting list
• An individuals health deteriorates the longer you are on dialysis
• A living kidney transplant doubles the life expectancy of the patient, compared to being
• Kidney dialysis is very expensive. The payback for the initial cost for a transplant is one year, even after taking into effect the ongoing cost of anti-rejection drugs.
• You have time to plan for the transplant
• Waiting for a deceased donor can be very stressful.
• The surgery can be scheduled at a mutually-agreed upon time rather than performed as
an emergency operation.
• Perhaps the most important aspect of living donation is the psychological benefit. The
recipient can experience positive feelings knowing that the gift came from a loved one
or someone who cares for you. The donor experiences the satisfaction of knowing that
he or she has contributed to the improved health of the recipient.
If you would like to know more, and/or be tested, you can contact Maureen Connelly, the Living Donor Coordinator, at St. Michael’s Hospital (Toronto’s urban Angel) at 416-867-3676. And if you’re not yet registered to be a donor after parting life, I encourage you to visit beadonor.ca
Thank you for taking the time to read this blog post.
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