Improved Tennis Game: Unexpected Benefit of Light Therapy for Skin (Part 2)

There was good news and bad news when they went from using one arm to two in the procedure called ECP, or extracorporeal photopheresis for graft-versus-host disease of the skin. The good news: it cut the "light therapy" down from three hours to two and a half. The bad news: I had to get two needles instead of one. If the nurse didn’t find the vein right away or if it went in incorrectly and hit a valve, I might even have to get stuck three times or more if the same thing happened in each arm.

New machines precipitated the change at the Kraft Family Blood Donor Center, where patients getting the procedure lie in a row of beds.¹

Not sure about new procedures

I was reluctant to make the switch. I felt that a needle in one arm was enough. One week, my nurse for the day, Mark, said he was just going to do it. He put the second needle in before I could say anything. I realized it wasn’t so bad. Now they put the larger needle in the left arm, for the draw, and a smaller one in the right arm for the return.

Since I can’t use my right arm, there isn’t much to do except to watch TV. I guess I could listen to something, but I don’t want to be in a bed in the middle of a room with my ears plugged up. The nurse for that day turns on the TV. I either watch the news, Judge Judy, or Law and Order SVU. I can get two Law and Orders in.

It hurts when the needles go in, but I get through it by taking a deep breath. It is no fun when it doesn’t go in right, though. I can feel when this is happening. It’s like a car going into a dead end. If they miss, the next day I’m likely to have a black and blue mark. Occasionally towards the end of the procedure it hurts a little more.

My orders say I can have oxycodone. One day, when I really needed it, the physician’s assistant in charge gave me trouble about taking it. She lectured me about it being a strong drug. She gave me Tylenol instead. I cried through the rest of it.

I told my regular nurse practitioner, who said to take it ahead of time then. She called and told them I might do it. The cool guy nurse, Mark, asked if I was buzzed. I was, a little bit. He got his phone and played a song by Jefferson Airplane, one of the bands equated with 1960's counterculture.

Unexpected benefits of extracorporeal photopheresis

My skin has gotten softer, but the lumps and bumps on my thighs and stomach are likely here to stay. I told one of my dermatologists that I wished for more, and she said that at least the lumps and bumps are soft! By the way, they’re not as obvious as I’m making them sound, but they’re obvious to me. And it wasn’t very helpful a while back when I went to the beach with a friend and she asked, “What happened to your legs?”

Besides stopping my skin from hardening, the procedure has had an unexpected benefit: It has helped my tennis game. It must be because of the less tight the skin, the more flexible my joints. I felt the benefit in yoga also. In tennis, I’ve moved better and have gotten to more balls. Our teacher, George, has asked more than once, “Ronni, what are they putting in your veins?”

I don't know which makes me happier, having softer skin or a better tennis game.

Read Part 1 of Ronni's experience with extracorporeal photopheresis for graft-versus-host disease.