Posts Tagged ‘Health’
The list for a donor organ in Belgium is 1,248 patients long. Many will wait more than three years to receive a kidney. Roel Marien, 39 and the father of two young girls, says he does not have the time to sit and wait. So he took matters into his own hands and began to search for a donor among his Facebook friends.
His move sparked a discussion among doctors and patients in Europe about the current system, which is based on strict laws and anonymity. Is it fair if people search for organ donors online to avoid endless waiting lists? Might social media give certain patients an advantage, if they can present their stories well online? Should Patients Be Able to Find Organ Donors on Facebook? (2015) by Benjamin Duerr as published in The Atlantic.
I am an activist. But I am not a normal activist as you might think. I am an activist for one person – me, myself, and I.
This may seem like a selfish position, but in the day of online slacktivism, I think we are all activists for ourselves. You have the people who use GoFundMe to ask for money for school/health, or to ask for a kidney.
My activism may be a bit more broad – I care about the Green Party and the Environment, my health, and other causes close to my heart. But try and talk to me about something outside of that, and I’ll be with the rest of the world watching Pop Star.
And isn’t it sad that we can’t move out of our bubbles, our comfort zones, to consider what others are being activists for? What is close to their hearts?
I heard it said once that liberal-types unfriend more people on Facebook than conservative-types, because conservative types are supposively more open minded. I don’t know if that’s true or not, but I do have a hard time reaching other activists in my sphere about my non-profit Journey to Diversity Workplaces.
Does that mean they don’t care? I don’t know. It means that they don’t care enough to look deeper into what I’m presenting.
The same can be said with my own kidney search. I haven’t taken to GoFundMe, because I am not out of pocket for any expense money. However, I have been on the transplant waiting list for 8 years. Yet a previous blog post I did on the topic got very few reads.
So what does all this mean? We’re all selfish bastards, and we need to learn to both lighten up, and to support our friends, and neighbours.
Because isn’t that what a good neighbour would do?
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.
For reader’s of my blog, you’ll know I am on dialysis. I have treatments three evenings a week, Monday, Wednesday, and Friday. This is both a blessing, and a curse. A blessing because I am still alive, and a curse because it makes it really hard to travel.
I am the immediate Past President of the Barrie Green Party. I was President for almost 6 years. I have been actively involved with the party since 2005, and this is my 10th year as a member.
Coming up 18 July – 20 July is the Green Party of Canada’s Biennial General Meeting in Fredericton, New Brunswick. I am sure it’s a beautiful city, but it has a huge barrier for me as an attendee. Horizon Health Network operates the Dr. Everett Chalmers Regional Hospital. They have a dialysis unit….
but it’s a satellite of the hospital in Saint John, New Brunswick. And they’re full.
If an attendee was in a wheelchair, we’d ensure there was ramp. If they were deaf, we’d ensure there are American Sign Language interpreters.
Saint John is approximately 1.5 hours away from Fredericton. I’d have to make two trips. One to see the kidney doctor, and another for the actual dialysis treatment. Upon visiting a new dialysis unit for the first time, it’s standard practice to see the kidney doctor. So the party is asking me to make a 6 hour round trip… at my expense. And I’m already a low income member.
Why couldn’t we simply have the convention in Saint John?
I had a similar problem in 2009 when the convention was in Nova Scotia, which unfortunately I couldn’t attend due to getting the flu. But 2010 in Toronto was fine, as was 2012 in Victoria, BC.
This past Sunday at its Annual General Meeting, the Barrie Green Party heard from Sandra Holdsworth from the Trillium Gift of Life Network. She pointed out that those on the waiting list for a heart transplant go around with a backpack that has an artificial heart in it to keep them alive until they get a transplant. I imagine they can’t just travel anywhere. How are we accommodating them?
So I am asking my fellow members to help me find a solution, as I could be on dialysis for a very long time.
Thank you for reading.
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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