Saturday, June 5, 2010

Getting a life

This morning my e-mail led me to an article on cognitive decline in hemodialysis patients. Technical detail: Hemo is the common type of dialysis you think of, in which you sit in a clinic for several hours hooked up to a machine that removes, filters, and returns your blood. It is usually done 3 types a week and seldom keeps people at full functioning. My own poor failing kidneys are still able to work for me without dialysis - today - and I am waiting for my living donor to pass her evaluation. But these overworked kidneys could fail dramatically today, and there I'd be, in the hospital, getting an emergency access through a port in my chest.

Looking at this study made me briefly put my face in my hands, the way you do when you just aren't up to dealing with something. "This study demonstrates that cognitive function deteriorates in hemodialysis patients over a 2-year time period." Of course. It's not like you don't know that. Physical function deteriorates on hemo, which is simply not as good as what kidneys do for you - they are a miracle of bodily function, filtering out waste. Mental decline is just one more reason to dread hemo. The article also talks about the side effects of the drugs that try to keep phosphates from building up in the blood, drugs I have in fact been taking for years.

There is this ray of sunshine - This "decline can be halted, and even reversed, by transplantation."That's the very hard place I'm in right now - waiting and hoping for that transplant.

Yesterday I broke down in the office of a kind doctor who was adjusting my medication in hopes that this transplant goes through. There is the kind of crying that is inarticulate, just a well . . . an overflow when the walls against grief let go. I told him what he didn't know, how these last years - since 1997, in fact - have been so hard, breast cancer, my father, mother, brother dying, Tom having to retire on disability. All these things hard and complicated. Then having my life eroded by this kidney failure, which drastically limits what I can do. It limits my mental abilities, I was already aware of that. I'm just not sharp enough or energetic enough to work on the novel I somehow managed to envision a couple of months ago. To work on marketing the stuff I already have, written before I was this sick, even to send out some poems is a big event. It happens to almost everyone with this illness - you can't work. That's more important to some people than to others, but you know, everyone wants to be useful, to live a meaningful life. To be able to work, to write seriously again was the first thing that flashed into my mind when I learned Laura had come forward.

This possibility of a good transplant, the best kind, from a living donor, cracks open a door behind which there is golden light - I could have a life again. To have a life, to wake up to days in which you can do something beyond just staying well. To be alive, to have a life. It means having the energy to change the bed. To take a walk with the camera. To plan and cook decent meals, not all this awful prepared stuff. To keep the house clean - that should be easy with this simple, small house, but I can't do it. Energy to meditate - mostly gone since my kidney function dropped to 8 percent in December. As for going on retreat? Impossible for a couple of years now.

Somehow I told the doctor that Buddhism gave me an edge in this. That after all, the Buddha's primary discovery was that human life is difficult, that we must expect sickness and old age. I am in a better place in that than I was in 1997 when I was astonished to be diagnosed with breast cancer and thought it was unfair. That was then I grasped meditation and then Buddhism like lifelines. They have been something to hold on to, but only enough to keep me from sinking, it sometimes seems. I am still in a raging sea, and I am not meeting these difficulties with unshakable serenity.

Not all loss is the same. The old cat I loved so much has been replaced by another old cat with a cranky personality. She keeps me company, and that has helped immeasurably. My mother is gone, but I have an older friend who has a gentle, kind attitude of caring toward me. But when you lose your youth and vitality nothing comes in to replace it. You struggle just to meet daily needs, just to exercise, to get out and around people enough to keep you from being too lonely. To find interesting low-energy activities, something besides watching TV. This is me, this is my life now. No wonder when James told me his wife wants to give me a kidney, I burst into a fit of crying that must have astonished everyone.

Transplant is an amazing treatment. It is a very rare opportunity, to be restored to health. You don't get that chance with a lot of degenerative illnesses. Despite its wonderful opportunities, it is still a dim and sometimes frightening path, a tricky major surgery, what can be a long convalescence, fallout from the anti-rejection drugs that have powerful side effects. But it's a life.
[image: fallen flowers of the catalpa tree]


  1. and its hope. many people out there in pain, alone and hopeless.. my friend calls life a valley of tears. hang in there.. everything will work out fine.

  2. There is a song in the spiritual tradition that I used to love to sing and play: "Jesus walked this lonesome valley. You have to walk it by yourself . . ."