Dear Lin Z,

I'm sorry to hear that you are having more symptoms with your MG, and regular plasmapheresis treatments may be in your future. I would encourage you to have careful discussions with your doctor, and also look thoroughly into your insurance coverage regarding how well they would cover regular PLEX treatments. Unfortunately they are very expensive (if you live in the United States, that is; even with insurance coverage, the co-pay is extremely high). You may want to consider talking with your doctor about trying some changes in medication along with plasmapheresis as needed. That way, you might be able to do plasmapheresis less often. Plasmapheresis is a good treatment, but it, too, is not risk-free. It's good to talk with your doctors and try to weigh the pros and cons of all the available treatments.

I get plasmapheresis on a regular basis. Having a jugular line placed is usually a short-term solution for a few days or week, until a longer-term access line can be placed. Usually the next step is a permacath, which is implanted below the collar bone. It is not permanent, but they can last for perhaps six months or so. If it is determined the patient will continue to need plasmapheresis over the long-term, the medical team will send the patient to a vascular surgeon to talk about creating a fistula. A fistula is usually made in the lower or upper arm. Sometimes the surgeon can make the fistula by combining the patient's blood vessels together to make a bigger blood vessel that can be used for treatment. Other times, they use an artificial graft. I have a fistula, and it is what we use for my treatments.

Yes, it is possible to have plasmapheresis on an outpatient basis. I am unusual, in that my myasthenia gravis symptoms are severe. I have treatment three days a week. We've tried to do treatment less often, but then I have more trouble with walking, breathing, and swallowing, and sometimes end up in the hospital when we do two days per week or less.

I do have a power port also, but we do not use it for plasmapheresis. We use it for IV access when needed during hospitalizations, etc.

I hope this helps to answer some questions. I hope you can get the treatment you need. Please let us know how things go for you.

Take care,
Erin