I'm home. Well, I've been home for about a week but I'm in Seattle right now for an appointment. I'm headed back to Portland tomorrow.
The last few weeks have been fine. Dull, even. Dull is a good thing at this point. Every indication is that I'm recovering quickly. That's what the doctors keep telling me anyway. It doesn't always feel like it. I am able to get out and walk around for a bit most days, though I need to take a break every couple of days when I over do it. My cardiologist explained it very well to me recently; I've been in heart failure for so long that my body has to readjust to getting what it needs to thrive. And that readjustment seems to manifest as some pretty significant pain. But I can walk around the arboretum for 30 minutes, walk the dog, or march up a hellishly steep hill (If you've been to the Seattle house, you'll know what I mean) so that's a trade off I'll take.
I'm still struggling to keep fluid off. My fluid load was probably the highest its been since leaving the hospital when I headed back home last week. So once again I'm on a high dose of a powerful diuretic while they monitor my kidney function. Diuretics and kidney function are not friends. Luckily, the diuretics have been more effective this round and my weight is diving to an acceptable level quickly.
I'm able to do a lot more around the house at this point. I'm doing a lot of the cooking, cleaning, laundry, etc. It comes with some shortness of breath, but that is probably due to the paralyzed half of my diaphragm and a couple of years of de-conditioning rather than issues with the heart. Every heart biopsy has come back with no sign of rejection. That's really good news.
Being home has been both good and bad. It's been amazing to have Melinda, Crash, and Aggie to pester on the regular again. Aggie definitely didn't know what to make of me being home for the first 10 minutes or so, she hid in the bedroom and then crept out and watched me from around the corner. We got things sorted out pretty quick, and she was trying to take my legs out from under me in the back yard in no time. Crash just sat next to me after I walked in the door, waiting for the attention he knew he was entitled to. Melinda has been super sweet and supportive as always. I don't deserve her.
As for the bad, it's taking me forever to establish a routine at home that works for me like I had in Seattle. I'm doing a lot during the day, but I'm constantly forgetting important things. I missed an appointment last week. I'm running out of medications before reordering them. There's things I brought home from Seattle that I haven't found in the pile of boxes and bags that I can't ever seem to get through. Worst of all, I've had to make decisions on which medications are the most important to buy, since I can't afford to get them all. I've only missed taking some things that deal with secondary symptoms for a couple of days, but the money situation isn't going to get better until I can get back to work, which probably won't happen until January. I have 3 social workers and 2 nurse coordinators trying to help me find resources to deal with this, so maybe I'll be able to afford insurance AND medication every month. What a crazy idea...
