02
Dec
16

I had a very busy day yesterday!

I’m writing to you from bed because insomnia — it is midnight Friday. These steroids have made me even more efficient on even less. My body is ridiculous. I don’t know how it does this. What sort of insane beast will I be when I’m closer to “normal” health?

ANYWAY

I went to work again yesterday! It was even more awesome than Tuesday. I’m definitely getting my groove back. My ankles are swoll as fuck — I did a worse job of sitting down and elevating my legs and I’m paying for it now, but otherwise I feel great! It’s so much easier for me to focus without those headaches I was having and I’m less fatigued. The strain this extra weight is putting on my body is a new challenge, but I’m not exhausted and unfocused like I was in the weeks leading up to my crisis. Mentally, I feel like I’m firing on all cylinders again. Being back at work has been really good for my self-esteem. I feel the most like myself when I’m kicking ass at work.

Before I went to work I had my follow-up appointment with Josh. I was a few minutes late which really stressed me out, but it ended up being ok (he ended up being later–fucking doctors, man). There’s not much to report. Treatmentwise everything is still really wait-and-see. He said my urine had “less activity” which I guess means less wayward protein and other stuff that shouldn’t be in there, so that’s a good sign.

The awesome party I imagine in my urine specimen.

I got blood drawn today, he’s supposed to call me tomorrow with the numbers, so hopefully we’ll get good news there. My BP has been stable since the hospital. It’s still a little high, I’m usually around 140/90, so we’re gonna bump up one of my BP meds and see if that brings it a little lower. My energy has been really good and I’m mostly tolerating my meds pretty good. I told him I’ve been feeling sensitive to the iron the last couple days but all he did was give me his sad “sorry bout it” face, so I guess that’s just a thing I have to deal with. UGH. My body needs iron but doesn’t want it, I hate you, anemia! I’m feeling a little better now though, so that’s good at least.

I reminded him I’ve gained 20-25 lbs since being admitted to the hospital and it’s very uncomfortable. I’m definitely getting double whammied with water weight from the steroids plus edema from my reduced kidney function. Hopefully it goes down as we taper the steroids and I hopefully regain some kidney function. In the meantime, I’m allowed to increase the diuretic I’m on until I see results and explore other means of dealing with it, such as acupuncture if I want to. I definitely need to find some solutions. My ankles, knees, and back are having a hard time supporting this extra weight now that I insist on not just laying in a hospital bed all day (and even that was still hurting my back). Not to mention I only have one old pair of baggy jeans that fits peak sausage legs and I’m not super interested in buying a ton of clothes that I’ll hopefully only need for a number of weeks. Same goes for shoes. But at least shoes will still fit after. Might use as an excuse for new shoes, hehe. Also, sweaters.

The one bummer thing is that Josh thinks it’s pertinent for me to start actively finding a living kidney donor match. Because my last recorded GFR was under 20, I qualify for the transplant list, so I should prep my transplant. Hopefully this changes with today’s blood test, but even so I’ll still be pretty close to the danger zone and better to be prepared. Outlook is much better for me if I’m ready to go with a living donor and can avoid dialysis if things go south. Since my body has been pretty fucking unpredictable with this whole mess, having Plan B ready is definitely the smart thing. Once I have my consultation with the living donor program folks I’ll send out some information on how you can get tested, if you’re so inclined.

While I was having Josh Time, my parents were downstairs stalking the chemo scheduler. I don’t know how many messages my mom ended up leaving this guy yesterday on my behalf, but he didn’t return any of em. Luckily, great success in person! Mom got my next chemo treatment pushed out about a week and a half, so I get to do a bunch of things I would like to do before my next treatment potentially takes me out (mostly some important work things, hopefully our holiday party, Elora’s birthday, and my parents will be back in town). She was also able to shift ALL my other appointments for the next six months from Tuesdays to Wednesdays which is a thousand times more convenient for my existing work schedule. Huzzah! Thanks Mom & Dad!

After I put in another full day of work with a little too much standing, Brittany came over for dinner! I went to the doctor, and to work, and was social! Like a  full human being! And the only downside is my wrecked ankles. Not too shabby.

I also came a little close to having a meltdown over the amount of protein in a tortilla jeopardizing my dinner plans. But it ended up being ok because I was so skimpy with my protein at breakfast this morning (which I also paid for — I was fucking STARVING before I ate an egg at lunch today). Food is important.

We’ve been making great strides in the food department. Mom downloaded a renal diet cookbook on her iPad with a lot of super useful information and recipes to try. She made us mac and cheese out of it the other night that was pretty good and can definitely be made better with more adventurous seasonings. I had the leftovers for lunch today.

I’ve got my system more or less figured out and it’ll get better over time. Protein and salt are definitely my problem areas. Protein adds up fast, especially now that I’ve started eating some meat again and fucking secret salt is going to make it really difficult for me to eat out. I spent a lot of time the other day googling the eateries around my office to find good options and SHIT IS BLEAK. Stuff I can find nutritional information for is mostly out of the question unless it’s the ONLY thing I eat that day (duh, no can do, will starve and die), and most places don’t post any nutritional information. I can figure out protein and potassium on my own from ingredient lists for the most part, but if those fools salt things I’m fucked, so I can’t really risk it. It’s a toughy. There’s going to be a lot of advanced meal prep and packed lunches in my future. Lots of pasta and fruit and hard boiled eggs. And popcorn. I am going to learn to love popcorn (with NO SALT!).

UPDATE: I’ve waited all day long to post this for Josh to call me with my numbers from yesterday’s bloodwork.

My creatinine and GFR are the same as when I left the hospital :-/ SIGH

But, my hemoglobin is up to 9.5 so I’m out of the blood transfusion zone, so that’s good at least. GLAD SOMETHING WORKS.

I put in another full day at the office today. I am very tired. I’d like a full night’s sleep tonight. I have big plans to couch potato tomorrow. Mmm potatoes…

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