Just a few words about the plasmapheresis treatment itself. Overall, the treatments were not a painful experience, but they were tiring and draining. The central IV line became very sore by the end of the week. It is a rather large line and is uncomfortable. The line entered just under my collar bone, went up into my jugular and then down the vein to near my heart and lungs. Ouch! The transfer of blood from me to the machine and back again was painless. I think my body was kind of confused with all the new fluid and will take a little time to adjust. Each day, 150% of the liquid part of my blood was replaced (equivalent of 1.5 gallons). I was given several medications to prevent clotting all week long. At the beginning of treatments, the old collected plasma was dirty and amber/grayish color. By the end of the treatments, the fluid was a nice clean, translucent amber. That's a good indicator of progress.
In some cases, plasmapheresis has a very quick effect on the individual. They show definite sings of improvement and begin recovery quickly. In other cases, the effects can take days or weeks; or not at all. I knew this before going into treatment. From my perspective, this was the first real treatment option I had and was worth taking.
As I mentioned in an earlier blog, I am walking a little better. I can walk a few steps heel-to-toe and a few steps on my heals. This is a real improvement. I am not aching as bad as I did a week ago. This is all good news. I will really be able to tell what is happening when I get back to my normal routine.
My physical strength is really increasing. I'm not back to normal strength yet, but much more myself.
There is no real difference in my sensory nerves yet. I still have difficulty with hot/cold sensations and pinpricks. I still feel tingly all over. It may take time for these symptoms to improve.
It is possible--since my condition involves multiple disease processes-- some will get significantly better, some may go away entirely, some may stay the same. Right now, the doctors are not sure what will happen either.
Dr. Lee believes the treatment would be worthwhile even if it just stops my symptoms from progressing. It would be great if it reduces or alleviated the symptoms completely.
As a precaution, I will also have another CT/PET Scan in April just to continue checking for the presence of hidden cancer or lymphoma. The autoimmune part of this neuropathy could still have its roots in a paraneoplastic process. It's good to keep check on that.
I will not be at church this Sunday. I need some time to build back some immunity in my system and recover some strength.