A Historic Day For Me

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.

Needles, Pills, & Blood Tests. OH MY!

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.

Start Of A New Week

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.

So What Happened On Friday?

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.

Long Day

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

Maybe tomorrow

More Fun Awaits Me

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 Is SO Frustrating

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.

Nothing New To Say

Everything’s the same, but I’m getting better

On The Road To Recovery

So last night, the Nurse came over to give me a shot of Blood Thinner. She put it in my stomach, which hurt like hell. My Wife had to leave the room when I was getting it done.

That’s my girl.

Anyways, I get another one tonight and for about the next two weeks.

Fantastic!

Recap Of My Second Trip To The ER

Late Friday night, I started getting Chest Pain. At first, they weren’t bad, so I figured that I’d try to sleep it off. As the night went on, the pain got worse and I didn’t sleep at all. By the time Saturday rolled around, I was in extreme pain. It honestly felt like I was being stabbed everytime I breathed.

My Wife & I got to the ER around Noon and waited about 45 minutes for them to admit me. I laid down on the ER bed for at least 30 minutes before anyone really saw me.

They tried 3 times in a row to get blood from me, but no luck, so they stopped for awhile. A little while later, they sent me for X-Rays, which was really painful because they had to sit me up, and put a metal board behind my back.

At this point, things got worse. For those unaware, I use a Ventilator 24/7 to breahe. One sits on the back of my chair as I go about my life. Normally, it runs on an External Battery, which can last 9-10 hours on a good day. I’m also able to plug it into the wall at any point to save Battery Power. When you plug it in, the light goes to “AC Power” to tell you that it’s plugged in the wall and everything’s working properly. It wasn’t switching over. At one point, it started going haywire when I was on my way to get my Chest X-Ray. Luckily, it started working a few minutes later.

So, we kinda had another problem on our hands. I needed to get another Ventilator asap. In between the other tests/procedures that I got, they hooked me up to another Ventilator.

Speaking of tests/procedures, I got Blood taken afterall, an IV, & , an ECG (Electro Cardio Gram), and a CT Scan. A CT Scan is when you go through this machine, while it spins arounds you, and it takes X-Ray images of you.

So after all that, they discovered a Blood Clot on the left side of my Chest. Luckily, they gave Pain Meds, so I could feel comfortable.

So because of the Blood Clot, I now require a daily shot of a Blood Thinner for the next few days. I have a Nurse coming later tonight to give me my 2nd shot. Let me tell you something, I have 5 tattoos, and have been injured many times, but this needle is freakin painful.

As for the Ventilator, a Nurse had to come on my ride home cause they gave me a loaner, so I could get home.

Right now, I’m using the one that I usually use when I’m sleeping. Obviously, tomorrow I’ll have to make some calls, so I can get another one.

As for me, the pain keeps coming and going, but it’s not as bad as yesterday. I’m hoping that things will start getting better now.

They also gave me the same Antibiotics for another 10 days, but nobody seems to know if I should take them while I’m getting my shot.

Sorry for the long post, but that’s the way it happened.

Thanks for reading.

Second Hospital Visit

I suddely got Chest Pains late Friday Night. I decided to return to the Hospital on Saturday.

Long story short, I now have a Blood Clot on my left Lung.

I’ll try to write more on Sunday.