Archive for the ‘Health’ Category
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The gift of life
I have been a renal patient since the age of 6. I had chicken pox, and that lead my already diseased kidney’s
Kidney location after transplantation. Adapted from the original source to enlarge labels, and to fix a labelling error – “artery” and “vein” were transposed. See this discussion on the English Wikipedia. (Photo credit: Wikipedia)
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
waiting list.
• 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
to dialysis.)
• 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
on dialysis.
• 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.
Peter Tretter
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Updating in the ecosystem
Canada (Photo credit: palindrome6996)
So it’s been a while since my last update. My Kobo I mentioned is a really good product. I did have to send it in under warranty to be replaced a few weeks ago, I couldn’t connect the Kobo to my computer. Works great now!
So with the Barrie Green Party, which is the local electoral district association for both the Green Party of Canada and the Green Party of Ontario; for a few years now we’ve played host to a few college co-op students. This term we’ve had our co-op students working on research articles for the newly formed Georgian College Young Greens. The newest is on Alternative Energy Sources. They’ll also be doing one for the Barrie Young Greens.
Health wise I’m still on the transplant list, I potentially have a 5 year wait still. I’ve been on the list for 5 years since it goes back to my “return to dialysis” date.
What else is new? I’m going to BC in August for the Green Party of Canada convention. I’m really looking forward to that!
Oh and I’m also now on Google+! And my main website has been totally changed to a cool new format!
Have a great day!!
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Upates about life
Things are going ok at work so far. I’d like more hours, but that’s something I’ll be discussing with my employment counsellor. Dialysis is the same old really. I’ve been on the transplant list since December, and now we play the waiting game.
Things with my new webhost have improved and are going well. I like them so far. Though I still preferred my old one.
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Lions, and tigers, and bears! Oh my!
So yeah, the migration of Draknet’s clients to A Small Orange is ongoing. Though I’ve heard that A Small Orange owned by the evil Host Gator. so I’m not sure how this is going to affect my service. Ah well.
St. Mike’s is still being slow, but at least the nurse there keeps me updated again, somewhat, even if it seems to be repetitive. I swear they’re slower than a snail. Things were so much faster in Ottawa.
Otherwise not much is new. I bought a new digital camera at Henry’s which cost quite a bit, but has some cool stuff like a great zoom. I can’t wait to use it, I don’t have a lot of stuff to photograph right now.
[Correction: It seems the owner of Host Gator owns A Small Orange, but not Host Gator itself. :-)]
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Updates
So I guess the biggest update is that my favourite webhost Draknet has been bought out by A Small Orange. I’m hoping the quality remains. I’ve been with them for 10 years. (Draknet that is.) They’ve been reliable, and very, very good. I used to recommend them all the time. Now I suppose i’ll haev to take down the referral links.
No news from St. Mike’s. The transplant coordinator who was on mat leave came back, and no news. I shall have to call them when I get some time. Work’s been good. I love my new job which is important, but I do work four days a week now. Better than none really.
And the Green Party is still going strong. We grew dramatically in July winning the membership contest, narrowly putting Elizabeth May’s riding in second.
Go us!
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Some light in the darkness
I spoke with Denise today at St. Michael’s Hospital. She is one of their patient advocates, and sounds like a very nice woman. I talked to her for a good amount of time, and she committed to sending an inquiry to the Manager of the transplant program, and she said she would try to get back to me by the end of the week.
How this came about was I wrote a letter to the Minister of Health and Long-Term Care, who’s lowly clerk replied and gave me Denise’s contact information. Which was surprisingly helpful. I may not need that end of April appointment with my MPP.
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Customer care
So when you use the services of a hospital, shouldn’t you be entitled to good customer care/service?
I find the notion that Ontario hospitals have license to be slow, with long waiting lists, and poor service to be absurd.
I moved to Barrie, Ontario July, 2008. At the time I was on short term disability from my previous employer, but I knew that I would be getting laid off due to events with the company. So a move to my parents basement was a logical, and smart decision.
Shortly after arriving I asked the lovely people at RVH dialysis to refer me to St. Michael’s Hospital in lovely Toronto since transplant services aren’t available in Barrie. It sounds simple enough, right?
Wrong.
After being referred three times, I had an appointment early in 2009, and then another with the surgeon in June, 2009. Nothing since then. And I’m done all the necessary tests.
I’m not even on the list.
They misplaced the CD I had sent them of my CT scan. The surgeons were due to discuss my case fall, 2009 but that was delayed until last week. And as far as I’m aware, they still haven’t discussed it due to their own incompetence of misplacing the CD.
So the hospital here in Barrie sent another CD. Due to the courier company Purolator (whom I am now boycotting,) they didn’t get it until last Monday. The same day I got the bad news. How is it that Toronto hospital’s are given permission to act completely stupid?
Back in 2001, I had surgery at the Toronto General Hospital and there was caked on blood on my hospital bed. My parents had to clean it off, because apparently they couldn’t afford housekeeping staff.
Why aren’t these hospitals taking accountability for themselves? They need to stop blaming the government, and get on with the business of healing people. That’s what they’re being paid to do.
Hopefully my current situation will resolve itself. I’m going on my fourth transplant. So for those of you reading this thinking ‘The list backdates to the date you returned to dialysis’… because it’s my fourth transplant the possibility of me finding a kidney is slim due to having to match my immune system to the kidney. It’s like a needle in a haystack. So I could be waiting three months or thirteen years.
Life happens. And so does St. Mike’s.
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