Waiting and Organizing

It was brought to my attention recently that I had not posted in awhile. I wish I had some grand excuse, but I must admit that I just kind of sunk into the day to day of being at home all the time. Seems like I should have time to blog all the time now. But, I tend to get lazy.... At any rate, here I am again.

One thing I've been doing is organizing this benefit on October 9th. I finally have the band slots almost full, so I'll be going to the printer to make posters and tickets soon. I'm excited, a lot of people have already RSVP'd and it looks like it will be a pretty big event. I just have this nagging feeling that I won't be there for it. I keep thinking they're going to call me on October 8th to come in for the transplant. Dammit I hate to miss a party! :)

But it'll be great either way. I have got some great people who are just lining up to help out. It really is an awesome feeling to find out how many people are there for you when you really need them. I don't think I can ever repay the outpouring of support we're getting as a family. It is truly amazing.

As far as what's up on the health front, I am on my I.V. drip of dobutamine which, by way of simple explanation, is a drug that assists the lower chambers of my heart with pumping fully. It has really made a big difference in how I get by day to day. Having an I.V. 24-7 and carrying a pump everywhere I go is kind of a pain in the ass, I'll admit. But it has been well worth the aggravation to feel better.

I started my cardiac rehab sessions this week as well. So far we've just been testing, but next week we'll start the actual working out. I'm looking forward to being able to do some work. I really want to get into better shape before surgery so my recovery is easier. I am SO ready to hit the ground running post-op. The sooner the better.

Well, that's it for now. I'll keep ya'll up to date on the benefit and let you know as soon as tickets are available. Have an echo tomorrow and an appointment with the doc next week. Any changes, I'll let you know.
Big Love!

Mindsets are funny things.

Sitting here watching my new favorite golfer Erik Compton. Found out about him in a story on HBO Real Sports. He's a double heart transplant recipient and he's out on the PGA tour. I've been needing those kinds of stories lately. Things have been getting a little tougher overall. Been having trouble sleeping, which is probably the reason I'm up at 2 am writing a blog! It's also been getting harder and harder to control the water weight. I think I'm getting closer to getting the PICC line IV and the stronger drugs. The upside to that is at least I'd move up in status on the list. But the obvious downside is running around with an IV in my arm all the damn time. Fun fun.
It's just generally been harder for me to not let my natural tendency to sink into my little woe-is-me-slumpiness. That's why it's nice to see stuff about people like Erick, who are on the other side of it and doing well. To use a wellworn cliche, I'm pretty damn tired of being so damn sick and tired. Seems like laying around in bed watching TV all the time would be GREAT! But I am rapidly approaching my fill.
One thing that is taking my time is planning the benefit. It's Oct 9 and we are getting some great ideas together. It's going to be a great day and hopefully we'll be able to raise some good money from it. I'll blog all the details when everything is nailed down and I'll let ya'll know how to get tickets.
Alright. Big love to all. Think I may go see if I can actually sleep. Until next time America....

Don't read this. No, really. Don't.

I know I haven't posted in awhile. I wish I could say that it was because I was so busy with fun activities with the family or something great like that. Even better, that I hadn't been posting because I was in the hospital with the surgery already. But no. It's just that I've been feeling pretty crappy lately.
I hope this doesn't end up coming off like some kind of whine fest (free tastes at every whinery!!). As much as I started this blog to keep everyone informed, it's also a bit therapeutic. Even though there are only a couple of people listening; hi Ashley; somehow yelling into the abyss of cyberspace feels good. Ok, disclaimer over.
I have been having issues with keeping the wonderfully delicate balance of fluid intake/output regulated correctly. We recently had to add an even stronger diuretic into my medicinal mix. Fun, fun.
I love that such a large part of my life now centers on how much I can pee in a day. Things have been reduced to a measurement of what-goes-in vs. what-comes-out. It's all starting to get depressing in the utter monotony. Sometimes I feel like I'm going a little crazy with it all.
It's hard being sick, for everyone. The kids want to do things and go places and I never seem to feel like it. Even when I do, I always peter out way too fast. I feel like they're getting screwed out of their summer.
Khristina doesn't have it any easier. She's the one who ends up having to take care of the entertainment and getting things done. I'm no good for giving her any kind of break lately. She's taking up all the slack, literally and in the end all she's left with is a husband who either wants to sleep or...... well sleep.
I feel like I could stay in bed 95% of the time. I've always liked to sleep late, but lately I just want to sleep all the time. Of course, when I do lay down it starts to get uncomfortable (see the earlier part of this about the fluid retention). Kinda screwed either way.
Told ya this was gonna be pitiful. Sorry. Maybe next time I should wait for a slightly better day.....

Rumors of my demise.....

OK, maybe there weren't actually any rumors. But I know I was MIA today. I was back in the hospital getting IV Lasix to pull extra fluid off. Getting to be a habit, I know. This time around I got a script for a new diuretic that I can use when I'm getting a little too much extra water weight. Maybe this way I can start doing this at home instead of having to spend the night(s) in the hospital. That said, the 3rd floor staff at SMC took GREAT care of me and were very nice people. I'll be back there after the transplant, so it's nice to know I'll be in good hands. Hope I'm lucky enough to see Jennifer and Heidi again for that stay.

On the transplant note, my doctor will be presenting my case at 7 a.m. this Wednesday (the 16th). Nobody can see any reason at all why I won't get the green light from the committee and be cleared for listing. Once we get their OK, I'll be on the list by the end of the week. Hopefully we're looking at a surgery inside of a year! We'll see.

All of the prayers, good thoughts and all around good vibes are felt and appreciated. It makes it that much easier to go through this with support and love from so many wonderful people. Thank you doesn't really do it, but it's all I got. From the bottom of my heart (Oh I love irony!!) thank you.

Type A

No, the title does not refer to my personality, although some would beg to differ. No, that is the result of the blood typing we did for the transplant. It's great news. We originally had thought that I may be type O which would have limited my donors to only O. Now I can take both O and A. Since A+ is second only to type O+ in commonality, there are a LOT of possible donors running around. Very happy day.

Saw some people at my mom's retirement party that I hadn't seen in awhile which was nice. One of those was Jill Carey. She's the former minister at the church we used to attend. She is also the same person who married Khristina and I. She is an amazing person to talk to. No matter how dire your situation or wound up you may be, she has just the right thing to say. Especially when that right thing is absolutely nothing and she just grabs ya and give you a hug. These aren't just any hugs, either. These are no-joke-lotsa-love kinda hugs. It's gonna be great that she'll be around for all this and for all of us.

So, with any luck, we are hoping for a date of June 16th for them to be presenting my case. Hopefully I can be on the list by July. So with their 8.5 month average waiting time.....

C'mon, sing it with me! "All I want for Christmas is a brand new heart! A brand new heart! A brand new heart!"

Rough one

I've been saying all along that there are good days and bad days. Gotta say this won't go down as one of the better ones. Physically not the best day. Been feeling pretty run down and having a hard time breathing most of the day. Got a lot of stuff done that I needed to, though. Mentally I think this day may have been one of the worst so far. I've been really snappy and have just had no patience for anything all day. I don't know, maybe it's just that I was feeling tired and bad. Not that it's and excuse. I just mean that may help explain things. Really ready to tee up on tomorrow and take another shot.

On another note, my second appointment with the transplant center is on Thursday. Really ready to get all of this preliminary stuff done and get on the list. Then I can just get to the waiting. Wait, um, ok..... Yeah, maybe I should be thankful that at least there is something to do for now.

One last thing. Thursday my mom retires from teaching after 23 years. 23 years of MIDDLE school, mind you. Congrats mom! Love you!

Direction found

Well. I think I found a direction to take with my blog. Last week it was confirmed that I will be needing to receive a heart transplant. This coming Wednesday is my first appointment with the transplant group to begin the "workup", read: lots of tests, many, MANY forms etc. etc.. It's going to be a crazy ride and I am going to need a place that I can just let the emotions out. A blog seemed like a excellent way to not only share information about what's going on, but also to journal things in a semiconstructive way. If someone stumbles across this who is going through what I am than all the better. If other people are midly entertained by my sometimes knack for something resembling wit, great! If you just enjoy reading about how I may or may not suffer..... Well, you're a sick fuck but whatever. Oh yeah. This may be a good time to point out that I don't plan on editing all too much. If you're offended by my sailor mouth, well, we obviously have never spent any time together! But I promise not to be too gross. Maybe PG-13 with the occasional R.

So now that I have a mission statement, I guess it's time to start the mission.
Earth below us.
Drifting, falling.
Floating weightless.
Calling, calling home.