Reply To: Please Educate Me On Plasmapheresis
IVIg never worked for me and I had maybe 30 in total. I then moved to PE for ~80 treatments in total. The cost to the insurance company is comparable to IVIg, but they have different criteria for PE medical necessity.
Since the procedure removes a large amount of blood and plasma, you will need to have a line installed (a normal IV or PICC line is too small for the volume). Unlike the Quinton GH used, I had tunneled catheters installed in my neck; the tubes ran under my skin and out my chest, into an output port and a return port. I was awake but numbed (Novocain or something) when they made the incisions and pushed the tubes under my skin and out my chest.
The installation procedure took about an hour in total. At the end of PE treatments, it will take about the same amount of time to remove it and stitch everything back up. Unlike an IV, these large catheters can stay in for a year or longer.
Yes, there is an increased risk of infection if one does not take proper care of the PE “port”. I had absolutely no issues with any kind of infection with PE, and I had several ports over 2-3 years. Installation of a port is more invasive that an IV, but not during or after PE treatments. I had all sorts of complications with IVIg (cuts, bruises, infiltrations, swellings, etc) as a result of being poked with a needle by people (RN’s at a Center of Excellence!) who didn’t really care and often brute forced the needle because my veins were not always popping out for them. I hate IV’s because of this experience! I’d rather have a port!
I was advised to not get the areas wet around the catheter. There is an increased risk of infection when wet. I could not take a shower with the catheter, sponge bath only. I had to replace the special bandage every week and clean the area with an alcohol-like solution to minimize infection, and flush the lines with Heparin. Many people rely solely on nurses to do this maintenance; I learned to do it myself because I didn’t want to have to go to the hospital every week just to get a bandage change.
Sometimes my blood pressure was too low for PE and they gave me something to raise it (usually food and drink, rarely a medicine). The biggest change in my blood pressure occurs when I transition between lying and sitting. The PE process usually took ~3 hours in total (Plasmapheresis usually takes 1-2 hours because it doesn’t remove as much plasma, just a few bottles worth). I often slept during most of the treatment. At other times I ate (hamburgers, pizza, cookies, etc) while PE was actively being administered and I regularly had visitors. At the end of the treatments, I was always extremely exhausted. I would look at the bag of plasma they removed (you have to ask to see it because they hide it from you lol), it was initially very dark greenish yellow, and the volume appeared to be close to 3 liter-sized bottles of soda. After several weeks of treatments, the color was a little yellow, almost clear.
Three days after my very first PE treatment I felt a reduction of numbness in my face. I knew then that PE was for me and I couldn’t wait to get more. In the beginning, it was given to me three times per week. Reduced to twice per week after a month or so, then once, then every other week for maybe six months. I never had any side affects from PE except tiredness. But I was recovered after a nights sleep.
I believe I would be walking today had I been treated with PE at the onset instead of IVIg.
Here are a couple good articles about PE: