Posts Tagged ‘Transplant list’
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The internal activist
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?
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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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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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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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