After I received my kidney failure news, my doctor reached out to a colleague at Rush University in Chicago. This was a specialist in the field of nephrology. The doctor advised to not use steroids, just go straight to the transplant process. My doctor seemed disappointed at this, as he thought steroids could help. I asked if we could try a low dose anyway. "Low dose" in this case is 40 mg/day. That's a lot more than you get if your regular doc gives you a steroid script for a sinus infection or inflammation. It's been a little over a month on predinisone. Life is tough on it. Don't get me wrong, I am super thankful for the little white pills I take each morning. They've made some inflammation go down, and my lab work go up. I will take it. But the side effects are a PIA.
Sleep, or lack thereof
I don't sleep. In fact, I haven't slept in 3 days. Well, ok I am being a little over-dramatic. I've had roughly 8 hours of sleep in the past 36 hours. And today I called in sick (not that I have sick time to take at work anymore), so I was able to get in another 2.5 hours. The problem is that even with cutting out caffeine a month ago, the prednisone still gives me plenty of energy! In fact, on Monday, I had the day off. Keith woke up at 4 a.m. to go out and train. The alarm woke me up (I had previously been awake from 12-3ish), and I couldn't fall back to sleep. So I finally got out of bed at 5. I didn't realize until about 9 a.m. that I hadn't even sat down since I got up. I cleaned the kitchen, reorganized the cupboards, did laundry, changed all the sheets on the beds, fed the kids, played with the kids.... and suddenly thought, "Oh shit, I should probably make myself sit down and rest for a bit." At night, I lie in bed staring into the dark. I could get up and do things, but I am trying to allow my body to rest as much as possible.
Steroids can cause anxiety according to the paper work. It's not exactly that for me.... it's more I can't shut my brain off. I replay the day, over and over. People who normally annoyed me pre-medicine annoy me ten times worse now. A comment that might not have bothered me before rubs me the wrong way and I obsess on it. I think of all the preparation I need to do before surgery. Keith doesn't know how to wash the school uniforms, I better write out directions, what should I include, what happens if I have it while the kids are in school, how will they adjust, Colin's already having issues, who will take care of them while Keith and my mom are in the city with me for days (if my sister-in-law donates to me, my mother-in-law will obviously be at the hospital caring for her), what if none of the donors work out in time, what if I need dialysis, crap, I don't want a central line installed in my chest for 6 weeks for that.... you get the idea. That's my brain every day from 2 a.m. to whenever I get out of bed.
I could eat a horse!
Steroids increase your appetite. BIG time. I am always hungry. But in an effort to help my kidneys last, I've changed my diet. No more processed foods, McDonald's cokes, cheese, ice cream, or red meat for me. I'm about 98% clean eating, with the occasional cheat to make me feel better. ;) After a procedure a couple weeks ago, I treated myself to a kid-sized coke. Mmmmmmmmm.............. I eat a little chocolate every few days. (In fact, I just received some amazing chocolate from Switzerland that is awesome!). I have to keep my iron up, so I eat one cheeseburger a week. But the rest of the time, my diet is pretty boring by my standards. Plain grilled chicken, rice, steamed veggies, eggs, fruit, plain popcorn, and a couple of plain-jane cereals that are iron-fortified (which btw, my iron went up quite a bit which helps with me not feeling so tired all the time). My body doesn't process protein the same way as before, so I can't eat too much. The steroids have caused my blood pressure to run pretty high, so I am constantly checking sodium facts. And that's in pretty much everything.
I was born a pretty positive person. And after all the shock of this wore off, I remain that positive person today. But I am not going to lie, most things annoy me pretty easily thanks to the steroids. The paper work refers to it as "mood swings". Women, think PMS but all the time. Not to mention, my body is exhausted from lack of sleep and my stomach is always growling (did you know that I do not actually like chicken? I'm probably the only person in the world...). So like I said earlier, if you annoyed me before all this, you annoy me even more. And I know deep down it's NOT your fault. So I try really really hard to behave and watch myself. But sometimes it doesn't always work. And I may snap at you without even realizing it. And if you make a comment without realizing it, something along the lines about my parenting and that you feel I favor one kid over the other, I'm going to lay in bed and cry my heart out over it.
There is no way to tell how long my kidneys will last once the steroids stop. Or if the steroids will even continue to work after another month or two. But they gave me extra time, and despite all the side effects, I'll take them as long as my doctor feels my body can handle them (which is probably another 2 months). The longer I can hold off the transplant without dialysis, the longer the new kidney will add to my life. Base time frame is 12 years from transplant before the new kidney could fail and I start this all over again. The average time with a living donor is 15-20 years, but the transplant surgeon said 12 years is the official number they go with. Everything else is a bonus. I've got three college graduations, (hopefully) three weddings, and grandchildren to plan for. I need all the time I can get. ♥