Day +65 Sleepy

Date: 11.17.18
Time: 5:10pm

Blood counts: all good

Still struggling with fatigue.  I slept all day again yesterday.  (Hey, at least I'm sleeping now, right?)  My prednisone has been reduced to 5mg daily, so that is probably part of the reason why I'm so tired.  The edema...the edema is still there.  Last week, the doctor finally agreed to let me take lasix, which is a diuretic or a "water pill" and it seemed to be helping some.  However, this week, I showed up with what looked like a razor rash on my shins...turns out, lasix has a "sulfa drug" component.  Which I am allergic to.  So no more lasix.  I've been doing my best to avoid a lot of salt, and wearing compression stockings, but every morning I wake up and can see the seams of my pants imprinted in my legs from ankle all the way up my thigh, so I'm retaining quite a bit of water, but can't really do much about it.  Since I'm not having any breathing or heart issues, the plan is once again continue to monitor, and do what I can, personally, to try to keep myself comfortable. 

Still very little hair on my head.  I'm starting to get a tiny bit of stubble, but at the rate that it is growing, I will never have long hair again.  I do wear a wig every once in a while, but if I'm doing anything other than sitting around, they make me really hot really fast, and it ain't a pretty sight when I start sweating my bald little ass off.   

Sitting around my house with hair.

So really, I sleep a lot.  I do a few things around the house when I'm able.  I eat more than I should for the level of exercise that I get (slim to none), and I'm still pretty much on lock down at home, except for my weekly appointments at UCLA, which is for the best, because I'm terrified on getting an infection (a cold, the flu) and the less exposure that I have to people, the better.  I'm beginning to realize that my recovery is going to take a lot longer than I had originally anticipated, since I can't even make it through an entire day right now without a 4 hour nap.

Day +51 The Thick of It

Date: 11.03.18
Time: 2:36pm

HGB: 13.9
PLT: 194
WBC: 8.43
ANC: 7.21

Well, I'm halfway to day +100, and most of my counts continue to look really good.  I did have to page my doctor at home last week as my ankles, feet and calves swelled up so bad that I couldn't put my boots on.  Cankles run in my family, so I wasn't that concerned until it kept getting worse.

Cankles

Since I wasn't having any shortness of breath (heart failure) or pain in my legs (blood clot) she advised me to elevate them, wear compression socks, and monitor and if they didn't get better to come into the clinic.  I spent all day last Sunday with my feet up, and the swelling went down a bit.  At my appointment on Tuesday, all of my blood and metabolic levels were pretty normal, except for my creatinine - which was within normal range, but a little high for me.  (Creatinine helps monitor kidney function.)  The nurse practitioner suggested that we just monitor for now, and see if we can figure out what's going on.  Its very likely that the fluid retention is a side effect of one of the medications that I am on, as pretty much half of them list edema as possible side effects.  They keep swelling and going down again - I think it is related to how much activity I do.  I'm retaining quite a bit of water today, and my feet and ankles are quite swollen - but then, Keith and I took at 2.5mile walk yesterday.  The more I do during the day, the more swollen I am at night.  Which is a bummer.  I don't want to have to sit around with my feet up all day.

Not that it matters what I want, I can hardly stay awake for a full day this week.  At my appointment on Tuesday, the doctor reduced my Tacrolimus to .5mg per day, and also reduced my prednisone (steroids) to 15mg daily, and it has wiped me out.  I've needed to sleep half of the day most of this week, and feel EXTREMELY fatigued.

I've been able to get out and walk a little bit, but not nearly as much as I would like.  The sunsets have been absolutely beautiful lately, and the fall weather has been just lovely.  Warm sunshine during the day with a nice cool breeze.

Fall Sunsets

In other news, my team was able to arrange for me to get my IVIG infusions at home, instead of having to travel to LA for them.  They take 4+ hours, so its quite a long time commitment.  I was going to try to schedule them for the days that I am at the clinic already having blood work done and seeing the doctor, but it just makes for too long of a day.  Last week we left for UCLA at 8:15am, I had a 11:45 blood draw, and a 1:30 appointment, and they were running a little behind, so we hit traffic all the way home, and didn't get home until 8pm.  Thats a long freaking day.  There is no way that I could have added a 4 hour infusion to that day.  So I have a nurse that travels here and gives me my infusion.  It means that I have to entertain a stranger in my home for 4 hours, but at least it cuts out our travel.  I'm still not released to drive, so every time I have to go to UCLA, it eats up Keith's whole day too.

So this week I'm super tired and I'm super puffy, and will most likely spend most of my days sleeping with my feet elevated.  I'm hopeful that eventually, things will start to even out, but right now I'm in the thick of it, and I'm kinda just taking it all as it comes.