Thursday, May 24, 2018

Still waiting to start waiting

I suppose at some point it would make sense to give a thorough background of my condition(s) and all of the things that brought me to this point. That's probably a little ambitious today. Let me begin with what I posted to my facebook wall a couple of weeks ago.

"This is probably going to be a depressing post, unfortunately. As most of you know, I was diagnosed with heart failure a couple of years ago, and there have been complications along the way. It seems that my condition has developed into acute heart failure, and it's unclear how much longer it can be managed with medication. Today I started the process of being evaluated for a heart transplant. There's no plan or timeline, just more tests before any kind of decision can be made. It could be a couple of months or it could be a couple of years. In the meantime, my symptoms have made it more and more difficult for me to function in the day-to-day.
I'm writing this for a few reasons, not the least of which is to try and minimize future awkward conversations. My other equally selfish reason is that I have come to the point where I can no longer do everything that needs to be done on my own. I'm going to need to ask for help, even more than I have been. I have relied heavy on a few people - [I probably ought to keep these names private in this space], among others. I don't think it would be fair to them, as generous as they've been, to keep asking them to help shoulder my burden because I'm too proud to put this out to the rest of the world. Well, here it is: I'm going to need some help in the coming months to get through all of this.
There will probably be some very specific posts, emails, or texts going out as things come up that I can't handle. I am going to ask, but I don't expect anyone to do more than they are comfortable with. I have no idea why I've been blessed with such good friends for most of my life, I certainly don't feel like I deserve them. But right now, I need them. Thanks."

Since that was posted, I've visited the doctors on my transplant team several times, and gone through a number of tests. Tomorrow is a big day as I'm undergoing the last test on my schedule, and hopefully will get some real news. As things stand right now, I've been told that I have a 50% chance of making it through the next six months without surgical intervention. That would most likely mean getting an LVAD while I wait for a heart.

Finally, I should point out that when I made that facebook post, my symptoms (chest pain, nausea, shortness of breath, weakness, and fatigue) where probably worse than they have ever been in the last few years I've been dealing with this. In the days that followed, some changes to my medications have made some drastic improvements to how I feel. Today has been a reasonably good day.

Weight: 208.6, Symptoms: Usual shortness of breath, mild chest discomfort, mild nausea

1 comment:

  1. This is very good information and i appreciate you doing this blog very much.
    ~jef~

    ReplyDelete