Archive for the ‘Rants & complaints’ 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.
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.
Back in March I was in an auto collision, with my 2007 Mazda 3 being written off by my insurance company. I was very disappointed, as I’d had that vehicle for 7 years, and loved it!!
Because of that, I was forced to buy a 2010 Ford Focus. It’s a good car, and good quality, but not really the primary subject of today’s blog post. No, today’s subject is a feature that came with the car! SiriusXM radio!! It came with a few months for free, and after that, with a coupon code in hand, I decided to subscribe. I had found a couple of channels I liked, and wanted to hear.
Then recently, SiriusXM Canada decided, in their infinite wisdom, to cancel the only progressive talk channel they had – SiriusXM Progress. But then the Canadian arm decided to take it off of the radio. It’s still available online, at the cost of bandwidth to me, but not on my radio.
Of course I emailed them – twice, and wrote to the President, Mark Redmond, via snail mail, all to no avail. So when someone from Sirius called me today, I finally cancelled, as I had promised in each communication.
I am done with SiriusXM Canada. They apparently aren’t progressive, which means they’re conservative. I won’t pay my hard earned dollars for that.
Bring back my channel, and maybe I’ll re-subscribe. I sorta started listening to Canada Talks, but the programming is all over the place, and none of it on Canadian politics. I’d love a Sirius channel on Canadian politics. But the progress channel was fairly awesome, and I enjoyed it for a few months.
Screw you, Sirius!!
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