Thursday, April 26, 2012

Day of may causes

You know the sheets of paper you get when you get a prescription filled? Probably that stuff you never read. Especially if you don't get scripts that often or you always get the same thing. Well, you should. you should read every letter. You should ask questions & you should get to know your pharmacist. Just like an old time small town drug store. Know whos giving you drugs. And more importantly KNOW what you're taking. What it may interact with. Especially if you get multiple scripts from different dr's. They may not know the consequences of the cocktail they just prescribed.

Also, have you noticed over the past few years how many class action suits are against drug companies for side effects that kill? You gotta look out for yourself.

And that brings me to the point. And the title of this entry. These are just a few of the things on those sheets of paper I have from my meds. Just stuff I can remember off the top of my head. SO,,,,,,,,,

Pay attention. Follow instructions. And,,,,,

TAKE WITH FOOD!
This May cause,
drowsiness,
sleeplessness,          "make up your mind dude. Is he gonna shit or is he gonna kill us."
stomach upset,
nausea,
vomiting,
ulcers,
 internal bleeding.             And I would know that was happening how exactly?
 Do not drive or operate heavy machinery.
 This may cause,
dizziness,
 fainting,
 blurred vision,
mild hallucinations.             Where do I sign up for these?
diarrhea,
constipation,
black or bloody stools       These 3 are meant to confuse the shit out of you. Literally
shortness of breath,
dry mouth,
loss of appetite,
rapid or irregular heartbeat,    In difference to what I have now or......? What?
low blood pressure,                See above statement
red,blistered or peeling skin.
 ringing of the ears,
hearing loss,
memory loss,
vision loss
muscle cramps,
unusual tiredness or weakness
prolonged and painful erection even when not having sex,   WTF? Really? I'm not taking freakin viagara.
severe mental or mood changes
confusion     Are the following all meant while reading this info or while taking the actual drug?
agitation
aggressiveness
impulsiveness
irritability
hostility
exaggerated feeling of well being,       Bring that shit on.
rash,
hives,
itching,
swelling of face, mouth, lips or tongue
seizures.
Death.


Now, don't take this medicine with that medicine or in conjunction with any of these families of medicines.
Take medicines at the same time everyday. Don't skip a dose but if you do dont double dose just wait for the next dose to get back on track.
Contact Dr immediately if you experience any of these side effects or allergic reactions.
Except maybe the death thing. You're kinda fucked there.

OK I cheated a little. I used my memory & the 3 new drugs I got for reference. Over the past month I have been on, switched from or to over a dozen different meds.

And I gotta remember all this shit to look for. memory loss or not. agitation or not. Tiredness but sleepless or not.

You gotta pay attention.



Wednesday, April 25, 2012

Dr. Day

So I went to my dr's appt today. This is the new guy. The one who is responsible for thew LVAD. He has a team of people I will eventually have to meet but before I get ahead of myself let's try to explain the appt.

I found the offices intimidating. Not quite sure why but I've been a basket case since my appt with my cardiologist so going in I was an emotional wreck. Here's what we did.

Set forth a plan of action that was communicated to me. Yep. That definitely helps to know what step is next & that a plan of progression is in the works.

He changed my meds slightly. Changed 2. Monitoring others. Weening off 2. And some results should be almost immediate. He doesn't believe we have complete control of the fluid build up. The Ascites. I tend to agree so again he earns points with me. He asked questions that only someone with or very familiar with my condition would know. This guy is seriously THE MAN in this city when it comes to this procedure. That makes me feel better. If the drug change works I should see a result by the time I call in on thurs. to his asst & give a check up phone call.

What I don't feel great about are a few things. Nothing has really changed. We're no closer to a fix & there is no guarantee I'm going to be able to have one of these implantable devices. Money & my lack of insurance is going to be a problem. That team I was talking about in the beginning. They have to approve this. So I have to jump thru hoops abit & give the answers they need to hear. Maybe we can set up some fund raisers or bike rides but we're not there yet & I really dont know what overall cost would be. My best guess would be somewhere over 100k for the device, surgery, & hosp recovery time. Thats alot but I dont know. It could be 2-3 times that. We'll find out later.

So I am keeping the most positive outlook on this as possible. thinking negatively can only bring negative things. But reality is while this process may take weeks to months to get squared away. I may only have days to weeks to live in my current condition. Anyone would be concerned & I am.

The new drug I took today definitely hits harder. I can feel it. I also get the same side effects as the other med & they're more intense too.

Now here's something cool. All the little aches & pains. All the other medical problems I have large & small including my emotions & depression. All that is being caused by lack of blood flow. The Lvad will give me back that blood flow & all my other issues will reverse themselves naturally. I found that fascinating at the connection. And hope that I'm not falling into a mental path I didnt want to go down.

He doesnt seem to think I'm gonna die immediately. He thinks we have some time. No one can give any guarantees but his opinion matters & its alot better than what I heard from the last Dr.

That's just positive stuff & makes what life I do have easier. The pains are still here. There is no magic cure. He needs some tests run to determine just how sick I am. He knows I'm bad. He wants to know specific degrees of bad. Fron there he can make somme decisions.

So how do you feel about it? Sounds positive but nothing changed. No difference in condition or feeling yet.

I'm on the fence about the whole thing. I will say I had to walk further today than I have since being out of the hosp. And while it was difficult I did suck it up & push through. Thing is, I;ll keep doing that til I drop. It's a fault. But they say go & I'll go til I collapse.

Speaking of that, I'm dozing as I write this. I nod off for a minute or so & then snap awake only to find I've lost my place & have to start over. But I'm trying And your support and prayers & well wishes are received with much humility. But it makes me happy to know people care about me.

If I do have to work with some sort of fund raising I will need some help. Never done anything like that before. I'm sure some of you have experience with organizing those kinds of things. This is just gonna require alot of money. And I'm proud but not so proud as to let pride take my life. We'll figfure it out.

I'm rambling now. I need to try to sleep. But I can tell thats gonna be tough 2nite. More to follow tomorrow but you deserved some info today.

PEACE
& thank you.

Greg