Here is the latest update on my condition.

My next PLEX (plasma exchange) is May 26, 2011. This will be my fifteenth treatment in a year. I currently receive a one-day PLEX treatment every two weeks at Vanderbilt Medical Center in Nashville.
Click here to see a video about plasma exchange.

The majority of my symptoms remain the same except I feel a little stronger and have a little more stamina after each PLEX treatment. But even that "stronger feeling"usually wears off before the next treatment. At least this gives me some slight, temporary benefit.

At the end of April, I spent some time in the ER at Memorial Hospital with dizziness, head pressure, and vision blacking out. Everything checked-out OK and was probably a condition called presyncope (near fainting) because of my autonomic nerve damage.

I went back for a yearly checkup with my cardiologist. Since an echocardiogram last May showed I had a enlarged right heart ventricle and I have severe breathing problems, the cardiologist ordered a new contrast echocardiogram. I have not heard the results yet. One of the conditions that can cause breathing problems is pulmonary hypertension (PH). There were indications last year that I had PH, but the heart-cath indicated that I did not have PH. We shall wait and see.

My breathing has not improved and the presyncope is still happening from time to time. My blood pressure has been from high to low at various times. I am shaking more and the involuntary jerking is slowly increasing. The summer heat is playing havoc with my body temperature. I am being careful not to overheat. And I still have a lot of cramps in my legs.

Still hanging in there.   Soli Deo Gloria!