Post Op Day 11 Medical Things Galore

Today is Post Op Day 11 hooray! Only a few more days and I’ll be off my weight lifting restriction on day 14, it’s still a bit painful to lift heavy stuff. But yesterday was a good day I got most of my home health supplies delivered. Though I’m still having a few issues with getting the correct amount of infusions, but I did schedule an appointment with my GI doctor because now I’m just confused.

Originally I thought we were going to continue my three times a week infusions like I do at the hospital currently, but something got lost in translation and my doctor is only letting me have one home infusion. I don’t think it’s due to infection risk or anything since he’s letting me stay accessed for a week straight. I think once I talk to him face to face next month things will get settled. Because I told him specifically that my goal was to get out of the hospital and be strictly home health only, as well as learning to do all my own port care.

Frankly I’m just super tired of going to the hospital all the time, I know it’s for the best that I go to the hospital three times a week but I’m just getting fed up with it. And I hope to do all my own port care because I want to feel as independent as possible even with my failing health. I have a difficult time just doing nothing about my health; I’m always doing something in an attempt to better my health. I’m always researching, always thinking, my body may be idle but my mind never is. I’m confident that one way or another my infusion stuff is going to get fixed because I’m going to fight tooth and nail for it. I fought for my port and here I am, so no use in giving up now.

But in terms of general supplies I have everything I need. And because of my adhesive allergy, I’m trying a couple different types of tegaderm to see which kind causes me the least skin irritation. And I have two different lengths of port access needles as well because I honestly don’t know what length actually fits me. When I’m at the hospital they generally access me with one length of needle that ends up being too long, then I end up having to hold really still because I’m paranoid that I’ll yank the access needle out of my chest. I’m probably going to see if the hospital has the needle lengths that I received with my supplies.

And something that also came with my supplies was an IV pole! I’m excited to decorate it for the different holidays. Though I hope I don’t need to use it too much but you never know, though my goal is to shove everything into a backpack to remain as ambulatory as possible. And when I was wheeling my IV pole into our spare room last night I was thinking ‘wow it feels super weird to be wheeling around an IV pole inside my house instead of the hospital’. And unfortunately my IV pump is only a rental because I wanted to decorate it too but oh well; I’ll just stick to decorating my IV pole.

And Monday I’m going to call Cleveland Clinic, because as some of you know I was supposed to have had a Smart Pill going through my body to see what part of my insides doesn’t work correctly aside from my stomach. But I haven’t heard anything from the clinic or the insurance company. All in all I’m just going to decline the Smart Pill and see what other options are available to me that are less likely to be declined repeatedly by the insurance.

I’m tired of waiting because here I am sicker than ever, even though I have my port, that only solves the problem of not being able to drink as much fluids as I would like to. To stay hydrated enough between my infusions that I don’t have issues with my blood pressure is really difficult, I know it should probably sound simple since I go to the hospital three times a week but it isn’t. I don’t have much interest in anything really, since I don’t feel hungry or thirsty very much.

I’m hoping in the end things will turn out for the better. Some small hope is really the only thing I have left anymore.