Posts Tagged ‘Accountability’
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.
In Canada, we are generally considered to be a democracy. In Ontario, it is municipal election time in every municipality.
We get to vote for the Mayor, City Council, School Board, Hob Goblin, Batman, etc.
Ok, we don’t really get to vote for Batman.
Recently I was telling a few people why I would not be voting for Barrie’s current Mayor Jeff Lehman. A few people told me I was not voting for him for the wrong reasons. However, at the end of the day, those reasons are my own, and we still live in a democracy. I could be totally lying, since it’s a secret ballot, and still vote for him. (Won’t happen, but theoretically it could.)
I think dialogue is a wonderful thing, but we shouldn’t discourage people from voting for someone – because they’re voting!! I would rather have someone vote for the “WRONG PERSON”, than not vote at all.
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.
Then it was recently announced that Sony was getting out of the e-Reader business, and that my library would be transferred over to Kobo.
Oh did I ever rejoice.
It was a very happy day, now I can sync those books with the iPad app, and the android app. I was ecstatic.
Then I got the link. The lovely link to transfer over my books. Should have been easy.
About half of my library was moved over, the rest weren’t under the explanation that Kobo didn’t sell them, and thus couldn’t put them in my library. Ok, no big deal. I already have them on my hard drive, I’ll live.
Then I uncovered the lie – some of those books were available in the Kobo library. So I submitted a ticket. In the end they can’t put those books in my library for free because… they’re the wrong format. PDF vs ePub. So because of it being PDF, I get screwed out of it being in my library, and thus have to manually load it onto my Kobo.
If the company makes a promise, they should keep it. This is just another epic fail that is making me reconsider this company.
The other factor – Kobo is challenging a Competition Bureau deal worked out with 4 publishers to end the ban on coupon codes when you buy their books. I’ve long hated that I can’t use coupon codes on Kobo, and I’m on the border… of switching to a Kindle.
So Kobo, get your act together, or you’ll lose my business, and I will stop recommending you to everyone who will listen. In fact, I’ll specially tell them to never buy or shop from Kobo.
We need your help!
Last evening, Barrie Green Party President & CEO Peter Tretter, launched a petition. He is asking the Royal Victoria Regional Health Centre (RVH) to do something extraordinary.
He wants RVH to stop buying styrofoam cups. Why? Well RVH doesn’t recycle them, and there are signs all over RVH stating the fact.
So Peter is petitioning them to switch to paper cups, which can be recycled.
But Peter needs 100 signatures by Monday morning to get the attention of Hospital CEO Janice Skot, and RVH.
What do you need to do?
1. Sign the petition!
2. Share the petition on Facebook, Twitter, Google+
3. Tell your friends and family about the petition!
Together we can end styrofoam cups at RVH!
Source: Barrie Green Party News.
The good news is I passed the Investment Funds in Canada exam!!
The bad news is I had a terrible experience after writing the exam at Barrie’s Georgian College.
So after writing the exam, I was feeling pretty good. Proud of myself. I got in my car to leave, and stopped at the gate to pay my $5. The gate didn’t open. It didn’t like any of my coins. In fact there were other coins in the coin return. I tired all of them, then I pressed the button for the parking guy.
First thing out of the guy’s mouth (over the intercom) is to try to accuse me of stealing. He did let me and my car go, and the money was left behind, but if the College had bothered to keep it’s equipment in top condition and/or up-to-date, none of this would have happened.
But that’s not why I think Georgian College should be held accountable. Yes it was a shitty experience, so I wrote a letter to the Manager at the Parking Office. After a week I had no reply, so I sent a copy to the College’s Public Relations department, and after another week, still no reply.
The Ontario Ombudsman has been lobbying the provincial government to gain authority to investigate the “MUSH” sector, which is colleges, universities and hospitals. Ontario is the only Canadian province where their Ombudsman CANNOT investigate this sector.
It’s about time this changed, and about time the College replied to my letter.
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