plasma exchange times

Hi

I have had a real reaction to the clear wound covering. I discovered I am alergic to that and regular tape. The nurses at the dialysis center in the hospital used silk or paper tape.

I always had 5 days in a row but was fortunate that medicare and tricare paid for it. I had good results and did PE for several years everey 4 weeks – 5 days.

Good luck and do well

I too had Plasmapheresis treatments for a couple years. This helped me more than IVIG ever did. IVIG does not remove the bad anti-bodies from your blood, PE does and it helped keep the bad guy count down while my auto-immune system was still producing the bad anti-bodies.

I took Prednisone to temporarily turn-off my auto-immune system while doing the PE. Prednisone has its issues and you can learn more about that by doing a search at the top of the forums page here.

Most of my PE treatments were done on an outpatient basis. This is a much less expensive approach and is covered by Medicare and most insurance plans. Since you are only at the hospital or Apheresis center for 3-4 hours, cabin fever is less likely.

I took Access Paratransit (in LA) to/from the hospital for $5 round trip. Then wheel in my power wheelchair to the Apheresis center and transfer to a bed. Initially I couldn’t do the transfers by myself and had to rely on the hospital’s ‘lift team’ to transfer me. The PE treatments kept the bad anti-bodies at bay giving my nerves time to do a little recovery so I could transfer myself, without the lift team.

I didn’t have an allergic reaction to the see-through bandage, but I developed a rash after they took it off (the adhesive seemed to rip my skin off when the bandage was removed). So, I had them switch to a cloth bandage and use their adhesive remover solvent each time they replaced a bandage. This solved my rash problem.

Look into the outpatient costs of PE for your situation. I would be concerned that the GBS/CIDP could become worse without the treatments. In my case, I have so much nerve damage from not starting PE until month 3 after the onset of the disease, I am now a wheelchair bound paraplegic. However, thanks to PE, I’m no longer a quadriplegic!

Hi Harry,

There are several different types of catheters that can be used for PE treatments.
1. Standard IV line – this is installed for every treatment and removed when done. It has the slowest infusion rate.
2. PICC Line – this can stay in for a few months, depending on how many PE treatments are needed. It has a medium fast infusion rate. You must keep the insertion area clean in-between PE treatments. You can usually enclose it in a plastic bag so you can take a shower.
3. Central Venous Catheter – most of these can stay in for over a year and provide the highest infusion rates. They advise against showering with this installed to reduce the risk of infection. Check this link for additional info: http://en.wikipedia.org/wiki/Central_venous_catheter

I had the 2-line tunneled catheter installed in my neck and the connection tubes went under my skin and came out (~2”) in my upper chest. Both lines were capped and taped to the outside of my chest in-between PE’s. If you sleep on your stomach, that could be a problem. It would itch from time to time, but I never had any pain while wearing it. I flushed it and changed the bandage every week. They tell you to flush the lines and change bandages daily, but for me, that would have created more risk of infection.

I did try the PICC line once, but it almost doubled my PE infusion time. It was fine for IVIG though. I opted for fastest infusion rates while I was doing PE.

I wish you the best of luck with your PE treatments!

I left the acute hospital about a week after finishing plasma xchange (PE), and spent the next eight weeks or so in rehab hospitals. I had a Quinton catheter in my leg and had nine treatments, approximately every other day. In my opinion, the more PE treatments the better.