The State of my Health

In general I'm feeling well, though anemia is wearing me down. The doctor said that it takes a while for the new kidney to start doing everything it's supposed to do, like help in the production of red blood cells. When I was on dialysis, I took injections of epogen, also known as procrit, once or twice a week, to catalyze the production of red blood cells. Epogen is a black box drug, the FDA's most dire category of legal drugs. This means that it can easily cause death if it is administered incorrectly or in too high a dose. Last week because my hemoglobin level was low, I was given a large dose of procrit. That often takes up to six weeks to fully kick in, so I'm feeling a bit less exhausted, but not where I'd like to be.

The other challenge is my legs, especially the leg that was broken back in March. Every step I take, I can feel pain in my knee or in my hip, as if the metal rod is poking me. This has been going on for many months, but it seems to have worsened lately. And then in general my knees ache upon even the least bit of walking. I know that dialysis and transplant patients are prone to bone deterioration, but I really didn't think this would happen so soon.

Though I lost 16 pounds in the four days following surgery, I began gaining them back until I was almost at my pre-surgery weight. This was due to water retention and increased appetite. When on dialysis, I had very little appetite and often consumed no more than 600 calories a day. Since transplant, I have felt much more like eating, though I certainly have not overeaten, and I have no desire to eat the wrong things. Ice cream, which used to be a treat, is something I haven't even wanted once since the transplant. But I suppose I currently consume 1,800-2,000 calories daily, which is three times what I was eating. In the last few days, however, my weight has dropped six pounds, so perhaps my body is finding its base weight.

Two weeks ago, the doctors were considering draining the blood that has collected around Pinky, so they had me stop taking aspirin in preparation for surgery. The swelling had diminished by my clinic appointment on Jan. 11, so the surgery was canceled. I forgot to resume the aspirin, but at my clinic visit on Jan. 14 (last Friday), I was told to discontinue the aspirin as they were considering a kidney biopsy. My creatinine, an indicator of kidney health, had gone from 0.9 to 1.0 to 1.1. Normal is between 0.5 and 1.5, so I was still doing well. Prior to transplant, my creatinine had reached 7.8, a clear indicator that dialysis doesn't do the complete job of the kidneys.

As I thought about this biopsy over the weekend, I decided not to have it performed. I mean, if the creatnine level is still within the normal range and if the creatnine level shows the health of the kidney anyway, why go in and poke around at Pinky and take a slice of her! It just didn't make sense to me. Yesterday I found out that my creatnine had gone down to 1.0, so the biopsy was canceled. And that meant that I could resume the aspirin, a good thing since, without it, I was experiencing chest pain and had to sleep sitting up to relieve the pressure on my chest.

Add to this I somehow contracted a cold, despite avoiding sick people and washing or sanitizing my hands at least 20 times a day. Runny eyes, runny nose, sneezing, and chills initially, now stuffy nose and fatigue. I thought I would be put on antibiotics, but since my white blood cell count was not outrageous--actually, the lowest since the transplant--I was told to watch my symptoms. If I get a fever, I am to call the clinic immediately.

Last night, sitting in the dark, watching an episode of "Mad Men" on my laptop (Aaron and Rasputin are spending a few days at a friend's apartment in L.A.), I cried. Not sure exactly what prompted this, perhaps the wistful, romantic sadness of the closing song. I wondered, as I used to do quite frequently and which I now do only once or twice a year, if I will ever find the man who is matched to me, who will be in sync with me sexually like Mike was but who is also matched to me in spirit. One friend recently told me that now that I'm off dialysis there is the possibility I could find someone. Well, I was not on dialysis for decades during which I was alone.

The kind of man I'd want would be far from the typical American. He wouldn't have a blackberry, an Iphone, an iPod, or even cable TV. He wouldn't run around like a rat in a cage; he'd be completely present. He wouldn't be thinking about his business meetings or his stock prices or his surfing prowess or even about his next move when he was making love; he would be pure, spontaneous, in-the-moment action with no thought. He'd know exactly what I meant when I said, "Use your body to lose your body." He'd be playful and silly, but he also would be able to tackle the deepest and most painful subjects, those that most Americans refuse to even acknowledge. And ours would not be a long-distance relationship. I've only had three relationships in my life, all of them long-distance: My husband traveled on business up to three weeks a month; Shizeng lived in Beijing and only stayed with me for eight weeks; and Mike lived 600 miles away in coastal Mendocino County.

And I've had one "understanding" with a man for a long, long time. When we were young, I'd show up on his doorstep, and without a word, we'd jump to it. But then I wouldn't hear from him for months or even years and he wouldn't return my calls. Though this bummed me out, eventually I just accepted it and stopped caring so much. He dropped out of touch completely for almost 10 years, then tracked me down through a magazine for which I was writing. Even though he came to Southern California at least once a month on business, it took him more than two years to see me. During that time, emails and calls would again go unanswered. In the last year or so, he's called at least once a month, but the understanding is now more of two old friends, though when he gave me a long hug recently, it felt really good.

It would be nice to know what it's like to love someone who's actually physically there. It's possible that such a man exists, but I have not yet encountered him. As society "progresses" (read: "digresses") toward a robotic, unthinking, unquestioning future, such a man will become even more elusive.