As I look back on my previous blog post, I can’t help but see how naive I was being. I was already beginning to feel the effects of needing more oxygen than I was getting, and I was getting a whole extra 3 liters a minute! But it wasn’t enough anymore.
A bare three weeks after that blog post, I was in the hospital for four days. I got out on a Friday evening, and had to go right back again the next morning, for another four days. I had been suffering from some pretty severe vomiting, every few minutes it seemed like, and having a very hard time breathing because of it. Plus, I had allowed myself too much fluid for weeks, and it was, again, collecting around my heart, constricting both my heart and my lungs, and giving me less lung capacity for air as well as less heart capacity for pumping blood. I was becoming oxygen starved, along with the frequent vomiting.
Several rounds of hospital dialysis (which is more thorough than clinic dialysis, partly because they don’t expect you to get up and walk out after treatment in a hospital) took off enough excess fluid that I was able to breathe again, and my heart wasn’t being crushed anymore and could do part of its job. It’s still failing, though, and enlarged from dealing with too much fluid. My heart will never again be very strong, nor will it be compact like it should be. It takes up lung space, just being there, because it’s been enlarged. And my lungs, with the frequent fluid overloads impinging on them and getting them all soggy, have suffered as well. Because of all the fluid that’s been there, the base of my lungs has collapsed on itself and gotten stiff. It doesn’t get any air into it because it’s like an old, hard sponge now. And now, instead of being on 3 liters of oxygen in a minute, in order to make up the difference, I’m now on 5 liters of oxygen.
That’s a pretty high dose, just to be able to breathe.
However, all this has driven home to me the fact that my room is not going to be any kind of neat, tidy, peaceful haven anytime soon. I need help if I’m going to do much of anything in my room. I already know I need help to make my bed properly. My brother has come over twice to help me with that. My sisters and my mother really aren’t up to it, since it requires flipping my mattress almost all the way over to attach the ‘sheet suspenders’ to keep the sheet from pulling free in the back. My bed now is my mattress with fitted sheet and flat sheet both tucked in underneath, with a huge pile of pillows to prop me up at night so I’m not sleeping flat, and a light blanket to pull over me or not (I sleep on top of the sheets), depending on if it’s too cold or not. It’s usually not.
In the closet is where I keep all my oxygen cannisters, which is what I use to breathe when I go out of the house. Each cannister only lasts me five hours, though, so I can’t do things like go on road trips, or anything like that. I have to be back at home within five hours, so I can breathe on my oxygen machine, which is by the front door. With it there, I can reach every part of the house with the 50-foot oxygen line. Oh, yes, the oxygen line; that’s a major tripping hazard for everyone in the house, but without it, I’d be back in the hospital again. I have a friend who ended up in the hospital because she tripped over her own oxygen line and fell down. She goes to dialysis at the same time as my sister and I do.
And while I was in the hospital, they discovered why I had been vomiting. I have gastroparesis, on top of everything else. That’s a partial paralysis of the stomach, preventing it from churning well or emptying fast enough, so that you end up with half-digested dinner still present in your stomach when you’re eating lunch the next day. Everything piles on top, and isn’t digested right, and your stomach rebels and won’t take anything!
So. For those of you who have been keeping track of my medical problems (I know I wasn’t!), let’s go down the list, shall we?
- Diabetes, requiring insulin at times
- End Stage Renal Disease, requiring dialysis three times a week (sometimes four), and strict fluid control (what goes in no longer comes out)
- Gastroparesis, requiring frequent very small meals, with frequent pills for my meals
- Congestive Heart Failure, which requires EXTREMELY strict fluid control
- Stiffening of the lungs (there’s a word for it, but I don’t remember it), which requires inhalant medicines
- Hypoxia, which requires supplemental oxygen 24/7
- Anemia, which requires treatment at dialysis with the hormone to make red blood cells
- Hypoproteinemia, which is low protein in the blood, which requires I eat a lot of animal protein
- Hypertension (high blood pressure), which requires several pills every day because I can’t breathe to exercise, and strict fluid control
- Hypercholesteremia (high cholesterol), which requires, you guessed it, more pills
- High potassium in my blood, which requires I avoid high-potassium foods (there’s a whole list, including dairy, tomatoes, potatoes, and leafy greens)
My medications list is now three pages long, not counting supplements. Some of them I have to take with every meal (unless it’s fruit). I am allowed less than one and a half liters of fluid in 24 hours. Three half-liter bottles. That’s it. That includes soups, ice cream, gelatins, and juicy fruits. That’s about what it takes for me to swallow all the pills I need to take.
I’m sharing this not to complain, but to explain why my room is never going to be pristine, or even neat, unless I get a whole crew in there to do it for me. Also, to explain why I haven’t got the energy to write right now. New health problems keep coming up and forcing me to accommodate them, too. Lastly, to explain why Trump terrifies me so. I’m one of the people he would prefer were dead rather than insured. Can we impeach him NOW?