Archive for the ‘Health’ Category
Since my last post, a lot has happened. This past November the Royal Victoria Regional Health Centre
opened their first in-centre dialysis chair. With the one chair they have given dialysis to up to 12 patients per week. With one chair! WOW!
I joined the Renal Patient & Family Advisory Committee, which saw me invited to today’s Clinical Operations Re-Design Group meeting.
Now the temporary unit is set to open at the beginning of April with two in-patient chairs, and four chairs for out-patients who need extra in-centre care.
I was fortunate to have a tour earlier today. Located near the Atrium entrance will make getting to dialysis easy for the out-patients. The unit is small. Might be tight once equipment and chairs move in, but it’ll be comfortable. Gone are the curtains you may be used to, replaced with screens for infection control.
In addition the unit has an isolation room for any patients that require it, and three sinks to ensure handwashing is priority #1. They’re not fooling around with infection.
As well there will be a washroom which is easily accessible for patients. Patients who can’t sit in a chair and require a bed will also be accommodated.
Overall the temporary unit looks very promising, and earns an A+. Great job all.
I’ve quit my job. My last day is May 29th. I’m almost done a pre-requisite course on Academic Writing.
Ladies and gentlemen, I am going back to school.
Mid-June, I will be starting in the Master of Arts in Leadership program at Royal Roads University.
Now you may be wondering why someone who doesn’t even hold a bachelor’s degree would want to do a Master’s degree for? After years at my current job, I knew it was time for a change. And for years I have been applying for various jobs internally, and externally. But what finally made me consider going back to school was the fact that I felt I needed education to back up my experience, and it was a great reason to renew my sanity.
What will I do with this degree? I don’t honestly know. I applied at the end of 2014, and got my offer in February. I really like how the staff at Royal Roads University worked with me to ensure I had all the documents required for my application. They even extended the deadline for an errant transcript. (I have done some undergraduate course work.)
I’ve always believe if you don’t like your current situation, you should change it. Thankfully there is usually more than one way to change a situation. Since everyone and their dog is going the second career route these days, why can’t I?
I do have some challenges facing me. I have a learning disability, I’m on dialysis – which alone makes it hard to travel to Victoria, BC for the twice I have to go – two weeks each. As well I’m busy with volunteer commitments, some of which I am giving up, or already have. I am prioritizing. Because volunteering doesn’t pay the bills.
Still at the end of the day, I know I will be better for having gone back to school.
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?
So this article is a response/extension of an article I read earlier today.
A Rookie’s Take on Dialysis: Ten Things I Have Learned So Far.
I have been a renal patient since 1985. I have been on peritoneal dialysis twice, and hemodialysis once. In addition, I have had three renal transplants.
1. You’ll wait on the transplant list for what seems like forever.
It takes a good year just to get on the transplant list due to all the testing, and vetting the doctor’s and hospital’s like to do.
WARNING: Once you’re on the list, don’t change transplant centre’s or you’ll have to start over from scratch!
In 2008 I moved from Ottawa, to Barrie. I got set up with St. Michael’s Hospital in Toronto. It took me 2 years to get on the transplant list with St. Mike’s.
2. The medical staff is not your friend.
Yes it may seem like it is one big happy family. Our unit has an annual Christmas party. It’s fun (if you choose to attend,) and probably worth attending once or twice. But you have to remember the staff aren’t your friend. They are there to get paid. So if you think something is wrong, or needs investigating, etc. it’s on YOU to inform the staff. And stick to your guns. It beats having to go to the ER when something does happen.
The staff like you to believe you can live a normal life. So believe it, and follow through on it. If you need a shift change, demand it. I’ve missed dialysis a few times over the years because a change wasn’t possible. Call their bluff. Now I know what I have to do to get that change.
3. Dialysis > Death
That is such bullshit! Ok, so I’m alive.
That isn’t always better to how you feel while a dialysis patient. With the amount of dialysis we get, you don’t feel like you did when you had fully functioning kidneys.
Back to #2 – You have a right to live your life, otherwise why are you on dialysis in the first place?
4. Warm blankets are one of the best things in the world.
Warm blankets are better than hot, fresh pizza! But you should always bring a blanket just in case your unit runs out of warm blankets, or even worse, doesn’t have any to begin with. (Like at Soldier’s Memorial Hospital in Orillia.)
5. Stand up for yourself.
This definitely goes back to some of what I’ve already written here.
When you’re admitted to the hospital for whatever reason (line insertion, transplant, fistula, line infection, clot, etc.) stand up for yourself. The last time I was admitted, I didn’t get my admission papers until the day before I was released. So demand them.
Don’t like the food? Demand better.
Write a letter/email to the CEO. Talk to the nurse or patient rep. (Many hospitals now have patient rep’s to see to your care and needs. Talk to them!) Or what I did; I knocked on the unit manager’s door, and let myself in. I got what I needed in a New York minute.
This seems to contradict everything else I’ve written so far. However, if you don’t relax your blood pressure, and heart rate will go up. You won’t be doing yourself any favours. So when you have time, relax. I try to relax while on dialysis, but seeing as how my blood is passing through me at a fast rate, not always the best time.
7. A transplant doesn’t last forever.
A transplant doesn’t last forever. The current estimate (and I’m not a doctor,) is 20 years for a full life of a transplant, and 10 for a half life. Most recipients will be back on dialysis after about the 10 year mark.
There are many recipients who are exceptions to this.
8. Dialysis is not a mental game.
See #6. If you psych yourself out over going to dialysis, then you’ll just cause your blood pressure to rise, and your heart rate to rise. Think of it as an opportunity to be away from the kids, or co-workers, etc for a few hours. It’s ‘you’ time.
Weather you’re on dialysis, or have a transplant – there are so many fracking drugs! So make sure to discuss them all with your pharmacist. In Ontario, you can go for a MedsCheck review once a year. It’s paid for by OHIP. Go over your meds, check there aren’t any that have been discontinued, that the pharmacy has the right dosages, etc.
Before any transplant, the social worker at your transplant centre will meet with you and ensure you have proper insurance coverage to pay for them. If not, the social worker will help you there too.
Many of the drug companies now have programs that if you loose coverage, they’ll provide your drugs for free. So be sure to ask about that, and to enroll!
10. Everything else.
- Keep an eye on your ‘dialysis adequacy‘. It’s a measure to determine if you’re getting enough dialysis or not. My unit checks mine every month. But they may not tell you what it is. So ask! You might be able to reduce the amount of time you spend there.
- Your creatinine level will never be the same again. Not even with a transplant. It’ll be close once you have a transplant, but will never be what it was when you were perfectly healthy.
- If your unit offers coffee/tea/other drinks, it’s a good idea to bring your own mug! (You save the environment, and get more than fits in a tiny styrofoam cup.)
- Be nice to the staff. They can make your life very difficult. You should stand up for yourself, but do it in a polite way.
Over the last 6 months, a lot has gone on in my life. As my close friends know, I lost my Mom to cancer in July. So I’ve had both a journey visiting Mom in the hospital, to being an outpatient myself.
As an outpatient, it’s no different than not being a patient at all. Most hospitals expect you to purchase (or bring,) your own meals, so vegetarian options are plentiful. Vegan options, depending on the hospital, I found, are more challenging to find. But at least you can bring your own.
A few years ago Mom was advised by her doctor to severely cut down on the amount of meat she eats. So she did. However, at the end of May she was a patient at St. Michael’s Hospital downtown Toronto.
I remember a disturbing conversation between a dietician at the hospital, and Mom. No doctor had countermanded the orders, so the dietician assumed a lot actually trying to convince Mom to eat meat. (Which is all they had sent her up to this point. She had to demand to speak to someone about fixing it.) Because various diets (such as a renal diet) do not necessarily mix with being vegetarian, or vegan because the protein sources could, for example, be high in phosphorous, which is bad for anyone with renal failure.
As an in-patient myself in the past (pre-being vegetarian,) most hospital’s automatically order your area’s “special meal” and forget the vegetarian part until you insist. And if you want this done in the first day, you have to complain real loudly.
I think this is an area St. Michael’s, and locally to Barrie the Royal Victoria Regional Health Centre needs to work on. First being meals patients actually want to eat, but secondly not assuming that we all eat meat.
As a renal patient I’m seen as a bit of an enigma – I haven’t eaten meat in 7 years. Yet my blood work is consistent, and perhaps even a bit better than my fellow patients who do eat meat.
As the dietician from St. Mike’s pointed out – nephrologist’s (kidney doctor) used to recommend patient’s with renal failure should reduce the amount of meat they eat. According to her that advice is now outdated – I don’t agree with her as the science so far, is behind eating less meat, and more vegetables.
Who can argue with a vegetable?
Oh, and I won the argument with the dietician. Team Peter – 4. Team Healthcare – 0.
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.
First off is an amazing YouTube video that if you haven’t seen it, you’ve been living under a rock. It comes to us from Volkswagen. It’s a must watch!
If you’ve been living under the same previously mentioned rock, then you’ll have completely missed that this upcoming Thursday is election day in Ontario. I’m not going to lecture you on whom to vote for, but instead share more YouTube vids!
- My own non-profit, Journey to Diversity Workplaces released its June newsletter today.
- A cancer donation box was stolen. While I don’t support giving drug companies even more money, this seems wrong.
- Postmodern Jukebox released their new video titled No Diggity. Though Like a Prayer is still my fav.
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.
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!
Have a great day!!
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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- The colours of movement
- The realities of cooperative banking
- Levelling up at RVH
- 9 Enticing Volunteer Opportunities you can do NOW!
- The secret of why I’m going back to school