Archive for March, 2009

I haven’t felt like posting for the past few days because I’m tired of talking about my health issues. I’m happy to report though that I’m off the needle though and today was my last day for my Antibiotics. So, that means that as of now, I have only one drug to deal with. It happens to be the Rat Poison Pills, which taste really really bad.

Last night, my Wife & I were finally gonna have a night out and go see The Wrestler.Just before we left, I started having Stomach issues. Once they subsided, we rented WALL-E, which I recommend you check out if you haven’t already.

By now, you’re probably wondering why is this a historic day for me.

On March 16th, 1994, I left the Childrens Hospital Of Eastern Ontario after living there for 19 years. The main reason that I stayed there for so long is because there wasn’t anywhere else to put me.

My years included 6 years in ICU, followed by 9 years on a ward full of school aged kids, followed by 2 years on a ward full of babies and other kids that needed long term care. From there, they sent me back with the school aged kids.

My “happiest* time was being with the school aged kids. I was able to make TONS of friends. We got to hang out, play video games, or we’d just talk and I’d try to cheer them up during their stay. Whenever there was a new kid or family, I’d usually show them around the ward and answer any questions they had. The downside was that ALOT of my friends passed away due to various diseases & illnesses.

When I was about 14, I got asked if I wanted to live in a Group Home or in a Long Term Care Hospital. My response was that I wanted to live in my own place. At the time, a person requiring 24/7 care wanting to live on their own was simply unheard of, at least here in Canada.

My Mom & I quickly started a letter writing campaign to see if it was at all possible. We hit many roadblocks as expected, but in the end, we prevailed.

On March 16th, 1994, I woke up for the last time at CHEO. The Hospital threw me a big party, the Nurses & other Staff came to say goodbye,  and the Media was out in full force. I was the first guy in Canada to attempt this.

It definitely hasn’t been easy, but it still feels amazing.

Just 4 years ago, they tried to kick me out of my home, simply because it was too expensive to keep me here. This time around, my Wife & I successfully won that arguement and I’m still here.

15 years later

My goal is to surpass 19 years and at least be able to say that I survived longer on my own than I did in the Hospital.

As the song goes, “Nothing is better than freedom”.

Thanks for reading.

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So my day today was filled with two Medical appointments at two different Hospitals at opposite ends of the City.

I started at The Civic Hospital for my (almost daily) Blood test. Much to my surprise, they got it in again on the first try. So far, they’re 2 for 2, which is a damn good thing at this point in time. My next test is on Friday, and here’s hoping they go 3 for 3.

From there, I headed to The Rehabilitation Centre to see my Respirologist. We went over everything that’s happened to me in the past month. Just once, I’d love to have a Doctor look at me and say, how the fuck are you still alive? I’ve seen MANY Doctors in the past 34 years and I can assure you that many of them were thinking that.

Anyways, the Respirologist changed a setting on my Ventilator and it seems to be helping me breathe better. He also said for me to be patient and to keep doing what I’m doing.

From there, I waited an hour for my ride home. I think the waiting was the hardest part.

As for tomorrow, I plan on relaxing after making some calls.

The fun never ends.

I went for Blood Work today, and to my surprise, they got it on the first try.

After that, I headed to the Thrombosis Clinic to ask a few questions and to get a refill on my Needles.

Yup, I’m a Druggie.

Good news is that tonight I get a break from taking Pills, which is quite literally Rat Poison.

On Wednesday, I get to have another Blood Test, and then from there, I have to go to another Hospital to see my Respirologist.

Needless to say, Wednesday will be a crazy day probably.

Friday was my appointment at the Thrombosis Clinic, which specializes in Blood Clots.

As you probably guessed, I had a shitload of questions, like who am I and what am I doing here? (Sorry, Simpsons reference)

I was pretty stressed out already just for being there. It didn’t help matters when the Doctors and Nurses kept changing their minds about how to deal with this.

In the end, they decided on two more weeks of daily shots, pills every day for the next three months at least, blood tests at least once or twice a week. Good news is that if I get tired of the Blood tests, I can switch back to the shots instead of pills.

Still with me?

On top of all that, I’m back on the original Antibiotics that I was taking for Pneumonia two weeks ago. That will be for another ten days.

Don’t worry, I’ll be publishing Cole notes, so you can be ready for a test on this.

As if that’s not enough, my Smoke Detector kept going off while I slept last night/this morning. Apparently, I’m getting a new one tomorrow.

So how are you people doing out there?

I hope you’re doing better than me and not feeling like a VooDoo Doll.

I’ve had a very long, stressful day.
I don’t feel like discussing it right now.

Maybe tomorrow

On Friday, I’m getting up at 8 AM to go to a Thrombosis Accessment Clinic.

Here’s a brief description of what it is:

This is an urgent care clinic investigating and treating patients with suspected and confirmed deep vein thrombosis (clot in the leg) and pulmonary embolism (clot in the lung). The clinic also provides consultation services for patients with suspected or confirmed thrombophilia (tendencies to develop blood clots).

The clinic provides a perioperative anticoagulation (blood-thinner) service for patients on long-term anticoagulants and manages all aspects of care for patients on long-term anticoagulants (monitoring dose adjustments / risk management).

Long story short, they’re gonna see how I’m doing as far as the Blood Clot goes. They’ll probably take some Blood work, which is always fun due to the fact that it’s hard to find a vein on me. From there, they’ll probably tell me what I can and can’t do, plus tell me what my future holds as far as having to take drugs for the rest of my life.

I can’t think of a better way to spend a Friday, can you?

At least, my Wife will be with me.

This whole month long illness is taking its toll on me. When I think about how fast my life has changed, it kinda depresses me. The idea of me possibly having to take Blood Thinners Pills for the rest of my life is still a shock to me.

I feel odd saying all this because I spent nineteen years of my life while losing friends to far worse illness or diseases than I have.

I will always be grateful for the fact that I managed to get out of there alive, got my own place, and eventually got a life partner that I love as much as she loves me.

It’s just hard for me to fully understand and perhaps accept the fact that I now possibly face a new health issue in my life.

I’m happy to be alive and I know that one day that I’ll be 100% again or damn near it. It’s just that the time that it’s taking to get there seems really really long and far away.

Sorry if I seem down, but that’s what’s on my mind.

Thanks for reading.