Today

I've been having plasmapheresis treatments since June--to help keep symptoms under control. We started them in preparation for the thymectomy that I had in July 2011. We've been continuing with the plasmapheresis as needed since then. We kept hoping that each round would be the last one needed...but that doesn't seem to be happening.

For the first two rounds, we had to travel to Atlanta...which was a big deal since each round takes 10 days and we had to come up with hotels and food for those days, not to mention the gas to get there and back. Then, finally, we found a dialysis place that would do it here--so much less trouble. However, each round requires the surgical placement of a central line, then I have to keep the line in my neck for the course of the treatment, which is both painful and inconvenient. The treatment itself is painless, but it leaves me feeling drained. The whole process is extremely inconvenient.

The benefit is simply about 3 weeks of functionality. That's it. All this trouble for 3 decent weeks. The process of plasmapheresis is simple in concept: pull blood out of the body, separate the plasma from the red blood cells, discard the plasma and replace it with artificial plasma (albumin), return the blood. This process gets rid of the antibodies that my body is creating that is causing a disruption between the nerves and muscles. So, I get temporary relief, but only until my body can create more nasty little antibodies.

We've been doing this as a means of being able to function. The medicines I'm taking, without the plasmapheresis, just keep me alive; I can barely move when I'm on them alone. The plasmapheresis helps enough that I am able to move a little. But I can't do it forever. It's rough on the large veins in the body. And all doctors that I've seen are out of ideas. I've been to over 30 different physicians over the last 2.5 years.

Today, I got an appointment at the Mayo Clinic in Rochester. I feel like it's my last option. If I go up there, and they can't come up with a plan to fix me, then I don't know what else to do. And I can't NOT go just based on the premise of being scared they won't find anything... So, here we go. Let's see what they can do.