Jeff's Journal

Juxtaposition

Last weekend, Shelley and the boys were in Austin for one of the Clear Lake Storm’s baseball tournaments. This left me home alone for the weekend. Since I was alone, I thought I’d drive to and from the clinic - as an experiment. The techs at the clinic are getting the machines calibrated to my body, so the pulling of fluid is tempered most treatments. I don’t feel great after treatments, but I had enough stamina to make it home without incident. I hope that things will continue to get better.

Since I was alone for the weekend, I made some plans of my own. I arranged to have dinner with one of the other patients, the young man who is the veteran of ESRD. I will not “out” him by name, but you need to know he is half my age and has been dealing with this for about a decade, almost half his life. He went through his teens on dialysis and now he is in the midst of young adulthood. Turns out, he went to school with some of the students in my youth group before he became so sick and his youth was interrupted. He has this annoying habit of calling me “Mr. Waldo” and we will have to work on that.

Dinner was good, but the conversation was better. We shared clinic stories and compared notes on our treatment plans, talked about the doctors, nurses and techs as we ate dinner. He told the story of how his kidneys failed when he was in his early teens. The saga continued with issues of diagnosis and numerous stays in the hospital. After a couple of years of pediatric dialysis, his mother donated a kidney to him. There were problems from the beginning. He was back in the hospital days after the transplant. He spent his adolescence in the hospital. He almost died several times from complications. The kidney failed after a couple of years and then back on dialysis.

His experience of dialysis is different from my experience. For me, the nurse hooks up the tubes hanging out of my chest to the machinery. He has a graft. A graft is a plastic tube implanted subcutaneous in the forearm. The tube is connected to an artery and a vein. He gets stuck twice every treatment with large needles in this plastic tube. One needle hits near an artery for pulling the blood out and the other is hit near a vein for returning. I watch him grimace and flinch (twice) every treatment as the techs cannulate him. I also watch him “hold” at the end of the treatment for about 20 minutes until his punctures stop bleeding. The people with fistulas and grafts cannot leave the clinic bleeding. They have to clot before they go.

He is a likeable guy and as he talked, my admiration for him grew. I admired his courage and attitude. He spoke honestly about the journey thus far, close calls and surprises. This guy half my age served up stories of life trauma between the dinner courses. He has presented nothing but a heart of gratitude for what he has been through and what he goes through. For such a young man, he has already lived several lifetimes, but he knows his best days are ahead of him and he longs to embrace those days.

He is too fluent in the language of suffering. He has suffered and the suffering has brought him a deep strength. I don’t’ think he knows it, yet, but that strength is present with him. It was a cool breeze in this summer heat. It was a great dinner. Optimistic. Hopeful.

At 10:00 pm, the night is young for a 20-something, but for us middle-age guys, 10:00 pm looks like bedtime. We parted ways at dessert. He left to go to his next thing and I went home.

When I got home, I logged on to my computer to check on other friends. I am part of a couple of online ESRD learning and support groups. One of the members in one of the forums sent a message out to the group.

The post was sobering. She has given up. She is tired and sick. Her experience of dialysis is not getting better. Her treatments are not making her better. There is not a transplant in sight. She is continually tired. After every treatment, she is sick, very sick. The experience is so bad, she has decided to end her treatment and wait for the inevitable.

Others on the forum chimed in about what’s ahead. There was no condemnation, no attempt to talk her out of her decision, no guilt trips. Two other forum members made the same decision in years past. There were words about what to expect based on the past experiences. There were words about how to prepare.

I sat in my chair stunned as I read the posts. Novice and naïve responses were all I could think to offer. I did not post. The conversation took my head to other places. I get tired. You never know how tired you can get.

A comment thrown out on the forum was, “dialysis is just life support.” When I think of that comment, I think Terri Schiavo and best days in the past. I guess that is where my online friend lives. But, life support with the best days ahead is like my young friend from dinner. It keeps things going until the next hopeful breakthrough.

posted by Jeff Waldo @ 7:50 PM