Sunday, April 13, 2014

The Liver Chronicles...A Jazz Critics Look At Life, Love and Music...

I've been overwhelmed the past few weeks. Procedures are on, then off, then on again...I feel like the proverbial yo-yo. I've lost most everything since getting sick both tangible things like an automobile and intangible things like my dignity to a lesser extent. Most of you know of someone either in your family or perhaps a close friend that has or may be going through their own on going medical crisis. To start, here are some helpful hints to keep in mind:

1.) Don't compare what they might be going through to someone else you know. It demeans us as people. When you have a chronic illness that can go terminal you become slightly self absorbed, human nature. We need to vent and we need you to listen. That is all.

2.) "Feel Better!" Not up to us...We wish it were that easy. We do however know that it is because of your sincere concern that due to the uncomfortable nature of what everyone is dealing with it is simply a fall back phrase, we get that. Try to avoid it. It reminds us that we are sick, we don't need reminding.

3.) I'm praying for you! Works for some and I totally respect that. Some people in my situation simply have a hard time wrapping our head around the notion that a deity will grant life or death based on an arbitrary attempt at communication. It may make you feel good to say it but if you are doing it to make yourself feel good then you may be doing it for the wrong reasons.

Just listen...These are just some reminders.


My "good news" was that my ultra sound showed my blood flow to my major organs was in fact "good" all things considered. While my health has declined as much as 20%, the fact that my portal veins are working as well as they are is somewhat encouraging.

My "bad news" is that while the liver by pass is 'for now" off the table as it could make my condition far worse, I'll be taking blood thinners to work on my inoperable blood clot. The danger being that if my bleeding issues kick off again then I run the risk of bleeding out before the ambulance can get me to the hospital. I inject these blood thinners into my stomach, twice a week for three weeks. I could literally be killing myself each time I do this...If I said I don't think about this and it doesn't scare the hell out of me at times I would be a liar.

I'll be taking that three weeks off. Dates are being finalized for all of this. One step forward has meant two steps back on some hospital visits. If the clot moves and if I react "o.k." to the blood thinners then a liver transplant "could" be back on the table...Meanwhile they check my blood work every week looking for liver cancer.

Try keeping up with this first hand, writing, fighting the billing office, fighting the Federal Government for disability and a hearing in June wonder why I get a tad fussy at times?

Be Well,