I am so excited. Lynn was able to type using both hands yesterday! He hasn’t been able to do that in months. He also was testing out whether he could hold a fishing rod and he was not only able to hold it but to reel it as well. He hasn’t been able to fish, which he dearly loves to do, in a couple of years. For the first time, we have hope of improvement, and it’s all thanks to plasmapheresis.
Lynn was in the hospital in May with respiratory depression. A week after his discharge, he noticed a significant decrease in movement and concluded he was having an exacerbation. Since he got steroids while he was in the hospital trying to improve his breathing, his doctor did not want to do that again so soon. Instead, he proposed doing a series of plasma treatments called plasmapheresis. He would have five treatments, and if he noticed improvement; maybe two more.
Plasmapheresis is a process where they put a central line into either your neck or groin and through that point, remove all the blood from your body and run it through a centrifuge that separates the Red blood cells, white blood cells, platelets, and plasma. You get back the RBC, WBC, and platelets but you get back albumin (liquid protein), saline and other stuff in place of the plasma. Removing the plasma reduces the inflammation produced by the antibodies in the nerve.
Plasmapheresis is done every other day so that the body has time to pull more antibodies out of the tissues to be removed. Lynn saw improvement the next morning after the very first treatment. Each time he got a little more function back. He was tired but felt pretty good for treatments 1-5. Treatments 6 and seven hit him hard. His hemoglobin had dropped so low that he felt pretty bad.
It’s taken about two weeks to get him back to normal now that he’s been home, but he’s doing awesome! His doctor said he might continue to improve for a few weeks after discharge, and that seems to be the case.
So if any of you are like Lynn and steroids don’t help but make you a crazy zombie who feels like a Mack truck ran you down, then ask your doctor about plasmapheresis as an option. It doesn’t work for everyone, and it’s not an option if you have heart problems, but if it does work, it’s fantastic. Well worth trying.
