Friday, September 10, 2010

For Those Living Without a Net

We ran into some friends at the store last Sunday. She used to teach with Susan but took a position at another school and they drifted into different circles. After a few minutes of high spirited catching up, her face got serious and she broke the news. She had been diagnosed with breast cancer and would be having surgery, a lumpectomy, on Friday morning. In just a few hours actually as I write late Thursday night.

"It's no big deal," she said. "They'll do the surgery, blast me with a treatment of radiation and that should be it."

"Oh no," I said. "Anything like that really is a big deal."

But I didn't push it. 

She is going into the surgery and treatment with a strong show of laughter and optimism, determined to conquer the disease with the sheer strength of her will. I hope she can maintain.

* * * * *
My cousin had a debilitating hemorraghic stroke several years ago. She was feeling bad, went to the doctor and was found to have extremely high blood pressure. The stroke hit before they had totally found the right combination of drugs to keep it under control. She's lucky to be alive, though it's not every day that she considers it luck. The left side of her body is still paralyzed. 

Yet her struggles to regain a semblance of normal life have been heroic. She now drives and has returned to teaching school. She swims, rides horses, and even skis and blogs. You can read her story here My Stroke of Fate or click on the link to the right.

* * * * *
Another good friend, a colleague of mine, has been battling colon cancer for a number of years now. He was diagnosed about the same time that my Polycystic Kidney Disease was getting bad enough to impose its presence on my stubborn consciousness. For a while we would kid ourselves that we were just trying to stay sicker and more critical than each other. But his cancer kept metastasizing, first in his lungs, then his liver, then his liver again. Each of these stages was treated with chemotherapy and radiation and he was pronounced clear of all but the last attack on his liver.

The chemotherapy is not working so well this time, but he is a stubborn fighter. 

* * * * * 

When the BK Virus was causing increasing kidney failure and I was going in for the first treatment of Cidofovir and immuno globulin, he once again joked about me one-upping him again. His concern for my condition was real. 

But there is a big difference between my situation and his. If the BKV wins and causes the failure of my grafted kidney, I just go back on dialysis. Life's routines change, but the quality of life is still good. We joke, but I've got a safety net. He's working without a net.

* * * * *
I remember years ago when we first encountered the severity of PKD. It was a scolding from the doctor we consulted for a second opinion when I faced my first kidney surgery. "The kidneys are already virtually useless," he told us. "Don't you know you have a progressive, uncurable fatal disease." No, we didn't know that, and crept in tears and fear to our car and back to work.

The shock was intense, but faded over time, only to return with a sense of anger and futility each time the disease reared its ugly head. But I've always had confidence and my strong sense of denial has enabled me to stay positive in the face of the negative prognosis.

My friends with cancer and my cousin with her stroke have no doubt had many moments of shock, anger and grief over the blows that life has dealt them, but they have battled back with great showings of confidence.

* * * * *
We heard about another old friend a few weeks ago. He and his wife and children (who were about the same age as our children) had moved back north a number of years ago. With no apparent illness beforehand, he died in his sleep of a massive heart attack. 

Boom. Just like that.

Thursday, September 9, 2010

BK Virus: 9.8 Treatment Continues

Another early morning rainy drive. This time through a heavy downpour as the remains of Hurricate Hermine pass through North Texas. As I'm about to turn towards the hospital parking, I remember that that's where I went yesterday for another infusion and today I'm going to the transplant clinic for followup.

Yesterday the Cidofovir infusion had gone smoothly with no incident and I was out by lunchtime. Today I found out some results, with more good news. The number of copies of the virus was down to 850! A considerable improvement from 3,150 two weeks ago and from the initial count of 497,000 back in June. The blood test is drawn BEFORE the infusion, so the number is the result of the last treatment. We'll know the effects of yesterday's treatment when blood is drawn before the next treatment in two weeks.

Everything else is stable. Creatinine was up a little at 3.3, but Dr. Nesser was not too concerned. Blood pressure is up, so he is restarting one of the blood pressure meds that had been put on hold. Hemoglobin and Red Blood cell numbers are both up. Still low, but improving, so the Procrit injection was put on hold again.

All in all a good day, with steady improvement in the fight against the virus. I was a surprised that the creatinine wasn't better. I've sure been feeling a lot better the last couple of weeks with a lot more energy.