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 actually 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.
Plasmaphersis 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 out 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. With removing the plasma, you take out all the antibodies that your body has produced during the exacerbation (worsening of symptoms) and which are causing the inflammation of the nerve tissue. It’s 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 7 really 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 he’s been hit by a Mack truck, then ask your doctor about plasmapheresis as an option. It doesn’t work for everyone and it can’t been done if you have heart problems but if it does work, it’s awesome. Well worth trying…