There hasn’t been much to report lately — things are pretty stable.

I oscillate between depressed, totally fine, and a little manic every few days. I’m in constant but manageable pain; my knees and ankles, other joints, my left flank, my face. I’m tired pretty much all the time, but rarely to the point that I can’t get out of bed, so I power through. I’ve had bronchitis for two weeks and the coughing has a caused a constant soreness in my ribs and chest.

My main kidney numbers still aren’t getting any better — my creatinine has been going up, it hovers around 2.5 – 4 which is where it was before I checked into the hospital three months ago. Despite that, my GFR is holding steady at around 12-14. I’ve been picking up more subtle symptoms of kidney failure, like bad breath caused by waste build up in my body and cramps in my legs and hands. It’s a total blast. Josh says my other numbers are showing improvement though. My potassium and phosphorous levels are good and my protein filtration is better. I asked if that’s just because I’m limiting stuff in my diet, but he assures me it’s indicative of my kidney function improving. Either way, despite my borderline numbers it sounds like I’m still aways from needing dialysis, so that’s good.

I was supposed to have my transplant evaluation a couple weeks ago, but I had to postpone it because my insurance didn’t approve it in time. The next available slot isn’t until the end of February, which I’m scheduled for and has been approved and I’ve done my blood test for already. Once that’s done, we can start screening potential kidney donors for me. I have some very generous volunteers lined up. No one has anything positive to say about their experience trying to get a kidney transplant. Mine is already not off to a great start. I’d like to get it out of the way before Trump fucks up our healthcare system even more.



My blood pressure is still a little high — 135/90 most of the time. We’ve switched up my meds again; off a beta blocker and back to an ACE inhibitor, but I think it’s making me feel worse so I’m going to talk to Josh about it. Still on the calcium channel blocker. Still on antibiotics. Still taking tons of calcium supplements, vitamin d, and iron. Still on the prednisone, but we’ve tapered my dosage to half what it was when I left the hospital, and I get to taper it to even less over the next month, so maybe I’ll get my face and sunny disposition back soon. I am a little concerned that the boost from the steroids is what’s kept me going the last few weeks and without them I’ll be too tired, but that’s not worth these side effects.

Now that I’ve successfully hacked my diet (seriously, someone in kidney failure should not be eating meat or dairy — it’s really fucking simple, and I can’t believe no one said that) things are better. Sausage D doesn’t happen very often anymore; I keep my feet up as often as possible, so I can wear my normal shoes again. Last time I had chemo I only gained 6 lbs from the fluids and it only took me a few days to lose it. I have chemo again this week, hopefully it goes about the same way.

I’m not too sure what’s up with my anemia. My numbers were trending well, but they dipped a bit last week and right now I am covered in bruises and I’ve been really tired. I’ll get more tests at chemo this week, so I guess we’ll see where things are.

Besides being tired and in pain and my face being totally swollen all the time, I’m basically fine I guess. Work is going to stop being so crazy now that it’s not January anymore, so hopefully I can spend some time looking into alternative treatments to manage my symptoms. I also really need to make an eye appointment because my eyes are fucked up and I don’t know if it’s because of the meds or just strain or both, but I feel like I’m going blind half the time and it’s hurting my head. I’ve been trying to exercise more — walking around, taking the stairs a bit, but it really wears me out and hurts my legs, so I’m not sure what to do about that. I had to jog about half a block to catch my bus home the other day and my legs were really close to collapsing under me. But, my heart felt good!

I’m over this you guys.


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