Hepatic Encephalopathy - the biggest struggle of my life

My dad was admitted to the hospital on August 13th and I came to town on August 16th with a plan of staying until October 16th...I'm struggling with it.

This is an email I sent my family. The only thing on the list that wasn't really a reason for the visit was his Diabetes.

"I'm sending some info about Dad's various health issues we are dealing with. I think it is important for everyone to be on top of things. Mom needs support and backup when possible.

Diabetes - From what I understand, Dad is a terrible diabetic. He has manipulated his insulin to eat things he shouldn't. I have heard about this from family and friends of his. His diet is regulated at the hospital. He should only be eating what is brought to him on his tray. What he ends up eating off the tray is logged. Right now, his blood sugar is getting closer to a healthier level, which, ideally is under 140. Food should not be brought to him. He, at this point, cannot make decisions about foods that impact his diabetes negatively. His intake of fruit or cake are both an issue. Anything ending in -ose is sugar.

Grade II esophageal varices - These are, essentially, varicose veins like people have in their legs. However, these are in the esophagus. The issue with these is the possibility of rupture and bleeding. Dad is a bleeding risk and his platelets tend to be low so if this were to rupture, it would be a very serious, if not fatal, situation. When he was at the Clinic, he had a procedure to have them banded. They only band up to 6 and that was what happened with that. In a couple weeks, he will go for his first follow-up check and will continue to have things checked. I don't remember how often.

Nonalcoholic steatohepatitis (NASH) - This is his cirrhosis. The liver hardens and then things go downhill. His liver does not function properly and will not ever again. The failure is what causes the big problems. It causes the fluid that builds in his abdomen and things like the high ammonia. It just can't filter out the toxins.

Hepatic Encephalopathy - This is liver related brain malfunction. Toxins, like ammonia, that are not being filtered correctly make their way to the brain. I'm pretty sure everyone has witnessed this in Dad. The ammonia levels are a big part, but other things that aren't flushing out through the liver can add to it. The treatment for the ammonia issue is a drug called lactulose. You have probably been in his room when he has taken it. It is a syrupy orange liquid that he turns his nose up at. Today he was increased from 4 to 5 times a day. You may notice him needing to use the commode more as his body adjusts. This might get a little better, but his confusion/agitation is pretty much his new normal.

Splenomegaly - This is an enlarged spleen and it is another effect of the liver disease.

Recurrent Ascites - This is the abdominal fluid that he has to have drained. His drainage has been a little over 5 liters, 5.5 liters, and 9.5 liters. You may have noticed his abdomen on the left side looking full again. There has not been talk of another tap yet. They are trying diuretics (meds that cause urination to flush the system), but it doesn't seem a likely solution. Continuing taps will most likely be the way things go from here on out.

Thrombocytopenia - This is low platelets. He should never be on a blood thinner because of this. The severity of the bruising he has on his arms are an example of his bleeding problem.

Now, for something on the upswing that needs to be encouraged. He has physical therapy twice a day and once a day he has occupational therapy. He has surpassed expectations at this point. It's great, but once he comes home, he needs to keep things up and not go back to the sedentary lifestyle he has been living. An example of something is not spending all his time in his chair and not using the lift function in place of using his own strength. He hasn't worked on steps yet, so not sure how that will go. If he could just manage the few steps to get in and out of houses, that would be better than nothing. Getting back to Church is something he has mentioned, but again, that is not something easy and he'll really need to work on that. I'm not sure how this will all play out, but right now, he's doing more than I ever expected.

Also, family is allowed to be with him in the therapy room. The times vary, so you'll have to check. It is on the 4th floor. This can be good for moral support and giving the therapists info. He really can go off on tangents and think he's answering questions when he really isn't.

There are more things I have done, seen, heard, and learned since I got here in mid-August than I ever expected for my life. If you have questions or anything, you can ask and I'll see if I know. Or, get in touch with Mom.

Thanks"

On September 16th he got discharged after bouncing around from hospital to hospital and back to the original hospital.

Of all the things on this list, Hepatic Encephalopathy is the worst to deal with as far as care giving. He is a completely different person. At times, my mom and I look at each other with a head shake. I've said it's like dealing with a toddler sometimes. I've heard him say things I've never heard from him. His abdominal fluid issue is relieved for a time when he his tapped. This doesn't work like that. The medication used for it is only really used to try to keep things somewhat under control. Honestly, I cannot picture what he would be like without the medication.

The is the most difficult time of my life and I had ECT and lost my memory of 2016.

Dog walking: A guest post from Shawn

Jarvis and me on a walk...

Jarvis: Hang on, I'm going to poop.
Me: Okay.
Jarvis: Okay, this is a good spot. Let me just...
Me: Hang on, don't do it there. Come over here a ways.
Jarvis: Oh, I shouldn't poop?
Me: Yes, go ahead, I just didn't want you to do it over there, right next to those people's window. Just do it over here.
Jarvis: I see, no pooping then.
Me: What? No, you can poop, just not over there. Go ahead.
Jarvis: I understand. I won't poop then.
Me: Why are you being like this? I think you're being passive-aggressive.
Jarvis: I don't know what that is. It sounds like a human thing.
Me: Are you going to poop or what?
Jarvis: No need.
Me: -sigh- Fine.

Twenty minutes later, at home...

Jarvis: Take me out, I need to poop.

***

Another walk with Jarvis...

Jarvis: GRRRRR
Me: What's the matter?
Jarvis: I hate those guys so much!
Me: Who? You mean those two dogs, that are like a block away? The ones you've never actually interacted with? You hate them?
Jarvis: SO MUCH!
Me: Why? What did they--
Jarvis: HEY ASSHOLES! YEAH, YOU! I THOUGHT I TOLD YOU NEVER TO COME AROUND HERE!
Me: Jarvis, they live three doors down from us.
Jarvis: DON'T ACT LIKE YOU CAN'T HEAR ME! IF I GET A HOLD OF YOU, I'M GOING TO RIP OFF YOUR HEADS AND SHOVE THEM UP EACH OTHER'S BUTTS!
Me: They're both bigger than you; I'm pretty sure they'd beat the crap out of you!
Jarvis: DO YOU KNOW WHO I AM? DO YOU KNOW WHO THE FUCK I AM?!?!
Me: Jesus, Jarvis, chill out! Where did that come from? Look, they're gone now, you can relax.

Jarvis: ~whine~

Me: Now what's wrong?
Jarvis: I miss those guys...