Posts Tagged ‘Dialysis’
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Levelling up at RVH
Since my last post, a lot has happened. This past November the Royal Victoria Regional Health Centre
Picture of my grandfather undergoing dialysis. (Photo credit: Wikipedia)
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.
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The secret of why I’m going back to school
English: Royal Roads University (Photo credit: Wikipedia)
It’s official.
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.
I was also inspired by Green Party of Canada leader Elizabeth May who has a law degree, but no post-secondary education other than that.
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.
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A Veteran’s Take on being a Renal Patient: Ten Things I have Learned
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.
Dialysis machines in Barrie, Ontario
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.
6. Relax.
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.
9. Drugs.
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.
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Healthcare industry injustice towards vegetarians & vegans
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.
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Renal services in Barrie – a letter
11 September, 2014
Janice Skot, President & CEO
Royal Victoria Regional Health Centre
201 Georgian Drive
Barrie, Ontario L4M 6M2Dialysis machines in Barrie, Ontario
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!
Respectfully yours,
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.
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The right question
English: St. Michael’s Hospital in Toronto, Ontario, Canada – at night from Queen Street. (Photo credit: Wikipedia)
I’ll agree that there is no such thing as a wrong question. However, I firmly believe that there is such a thing as the right question.
Last week someone asked me something I’ve never in my 30 years as a renal patient ever been asked before: How long have I been on the transplant list?
Of course for those who know me, would respond to that with a question as well: Which time?
Because for those who truly know me, would know that my next transplant won’t be my first, second, or even last, as unfortunately as it is for me to type that. No, it’ll be my fourth. And no, I cannot have an indefinite number of transplants.
Back to the original question though: This time, I have been on the list since 2007. Now to qualify that, when a renal patient goes on the list, they have to have gone on dialysis first. And your place on the list is based on what day you went back on dialysis. So despite the fact that St. Michael’s Hospital didn’t formally put me on the list until 2009, it went back to the day I went back onto dialysis.
And every year I do a series of tests to ensure that I am medically capable of remaining on the list.
A hemodialysis machine, used to physiologically aid or replace the kidneys in renal failure (Photo credit: Wikipedia)
So what does that mean for me?
Well, likely I will be on the list until at least 2017, possibly longer. Because I’ve had so many transplants, I also have every antibody known to man. Thus, matching a donated kidney is difficult at best. A PITA at worst. At least I’m not getting any false calls… except for that one time in 2011 or 2012. Missed a day of work too.
And the reality of it all is – until they can change my DNA to cure the underlying problem that causes the chronic rejection, the prognosis is that I’ll likely keep a transplanted kidney no more than 5 – 7 years… and then I’ll have to lather, rinse, and repeat.
It can be a morbid subject that at one time might have caused some brief depression. Now in my own words to the doctor: “That’s 7 years I have freedom to do anything.”
I have some freedom on dialysis, but it’s not true freedom. I can’t go on vacation in California, because I have no one to foot the medical bills. OHIP pays very little. They’re cheap bastards.
So the question isn’t about how long I have been on the transplant list. The question my friend, is about weather or not I’ll be on it again. Or weather or not I’ll even want to bother with dialysis in the first place. We all assume I will. But until I am there making that decision, in the moment, I have no idea.
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Are the @CanadianGreens as inclusive as they could be?
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.
If you live in Ontario, I encourage you to ensure you’ve signed your organ donor card, by visiting the Barrie Green Party’s campaign page. (If the link doesn’t work, visit beadonor.ca)
Thank you for reading.
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