Friday, September 4, 2015

GI appointment

I've know something  was wrong with me, (well something else, what isn't already wrong with me?) I've know for a while. I've had a hard time swallowing chicken for a while now. After a while, I'd become nauseated for no apparent reason. Suddenly my appetite shrunk, and eventually I couldn't eat certain foods without getting sharp stomach pains. I occasionally mentioned my stomach pains but my primary care doctors didn't think much of it.

When drs don't think much of what I tell them, I tend not to worry about it. I try my best to ignore it. I cut out what hurt to eat and got on with life. Fast forward about 2 years and I had my first meeting with the liver team. (Did you know it cost over 900$ to talk with a liver transplant dr!?) My fontan (the open heart surgery I had when I was 1 1/2 and then again at 19) is well known for causing liver issues. My team has been watching my liver numbers for a while now and they have slowly been getting worse. They weren't to concerned and said we would continue to watch them. I sat on the advice for about 1 day and decided, "no, not gonna happen." I didn't want to just sit around waiting for it to get worse. So I called them and told them I wanted them to recommend me to the liver team. Thankfully, even though they didn't think it was worth it, and that nothing can be done, they referred me anyways. 

Have I mentioned how much I love my cardio team? They listen to my concerns and even if they don't think its that big of a deal, they do what is needed to help me feel comfortable. 
So I went to the liver clinic, they drew a lot of blood, to checked for diseases that could cause liver damage 

Thankfully all the blood work came back negative. So more testing was order. We did yet another abdominal ultrasound. 
We know for sure my liver is fibrosis, but we are believing I'm in the beginning of cardiac cirrhosis. My heart isn't sending enough blood to my liver. So we decided it was time for an upper endoscopy. Josh came with me because I needed someone to drive me home.

 How cute is he sitting there holding my bag!!!! This was his first time going to an appointment with me.
Scopes aren't to bad. They put the bite block in my mouth and then injected the meds that would put me to sleep. I remember my body got really warm and I mumbled "wow these meds are strong" and the I was out. These are the pictures they gave me.

Most of the pictures were normal. 
Except this one. It showed what my doctor thought was a bezoar. Undigested food and/or foreign objects that was stuck in my stomach. I was sent home within an hour of the scope. The Monday after the nurse called to check in on me. I told her I was nauseated. She began asking questions and I ended up telling her about my nausea and stomach pain issues. She referred me to GI to see if we could get it all figured out. Two days ago I met with the GI team. The dr told me what they saw on the scope was not actually a bezoar, but undigested food. They proceeded to tell me that they thought I had what the call delayed gastric emptying. Also known as gastroparesis. My heart dropped. Gastroparesis scares me. I've worried for a  while that it might be gastroparesis. I've watch friends go through it. A lot of them have needed feeding tubes. That scares the shit out of me!

So we set up the procedure the will confirm whether or not I have it. 
I pray I don't but it would explain a lot.

1 comment:

  1. I think it's great that you have someone that supports you. Keep eating foods that don't bother you and perhaps you won't ever need a tube