Day 37: The one long headache is diminishing

With that drop in the Neoral two evenings ago, I have instantly noticed that my headaches have gone down to a dull roar and that my sleeping is better (fewer night sweats) and my water-retention swelling is less. Next Thursday the Neoral will drop down even more - and, excitingly, also the Prednisone. That's the one that causes my blood sugar to rise. I will be excited to see how good I feel, because let me tell you, I'm on some kind of natural high at the moment.

Life is suddenly in 3D! I have a lot of giddy, giggly energy. I can dance around the room and make Gary laugh. I can be my goofy, silly, immature self and jump on the bed without that cumbersome P.D. catheter! I did some lovely yoga and breathing last night when Gary was out and I felt so liberated, so free from constraints, tiredness, apathy. I felt really connected to my breathing, to the stillness after the rain, to the candlelight in the room, to the gratitude of the passing moments of life.

My eyes are sparkly. When did this go away? It's such a gradual process, kidney disease. It's hard to notice the signs of deterioration. I now recall some specific times when some changes occurred. I'd put them down to being 40, to losing my father - both in the same year. This was the year I started napping every day before going to my evening job. This was the year when I told my mother that I didn't ever go out except for work and necessities. That I liked to stay in, sewing and creating, listening to music and reading, lots of sleeping. That I liked to close the curtains on the day. She told me I was too young for that kind of attitude. But I lived in LA..a hub of chaos which didn't agree with me. I wanted to close the curtains on the hot, smoggy day and be in my cave of creation. Now I wonder: was this part of the disease too? This cocooning? I noticed a lot of cocooning after the dialysis. And I thought I'd have the same desire after the transplant, but it just isn't so. Voracious is the new word. I just want to be sure to balance it with that yoga feeling I had last night.

Day 27: Feeling like myself again...perhaps after years and years...but these Neoral headaches!!!

It's been over 20 years since my kidney function was this good. It's hard to say what kind of daily impact that has on a body, on the day to day physical condition. I do know that even in these very early stages (the surgery was 4 weeks ago today), my energy level is much better than I can remember. I am so used to be in a half-state of tiredness. If I'm tired these days, it's assuredly due to the vast number of drug side-effects:

I have these incredibly bad 24-hour-a-day headaches that escalate into excruciating migraines by night because of the Neoral (one of the immunosuppressants). These evil headaches begin as soon as I wake - at the base of my neck, only on my left side, and by about 8 or 9pm have begun to creep slowly up the entire left side of my head, travelling down to end at my left eye. By 11pm, the pain is so bad that I'm in agony. I have tried Paracetemol and Tylenol (the same products) to no avail. I mentioned the headaches to my doctor yesterday; he wasn't surprised, but simply said that I have 2 more weeks before he decreases the dosage by half. I'm currently on 500mg of Neoral per day, a pretty normal amount for my weight.

I can't wash my hands in anything but cold water these days, as hot water makes me feel as if I have had frostbite. It's another side-effect, called 'hyperesthesia', basically hyper-senstivity. So it's that ice-cold winter water from the tap that feels most normal to my hands.

I also have these charming nightly night-sweats due to the Prednisone (another immunosuppressant). Another side effect is the raised glucose that I wrote of before that makes insulin injections temporarily necessary (both the aforementioned Neoral and the Prednisone are the nasty little culprits). Thankfully, the dosage of the Prednisone will go down from 10mg per day to 5mg per day in 2 weeks.

It's enough to make anyone tired.

I just keep thinking this: whatever it takes to keep this kidney from being rejected is what I have to do for this short time. Besides, after waking up in that hospital and realising how much had happened during the surgery is enough to make a person deal with almost anything else. :)