plasma exchange times

    • September 3, 2013 at 11:51 am

      Hi ya’ll just got out of the the hospital from my 2nd round of plasma therapy and I got a few questions. First one is has anyone got a allergic reaction from a clear wound covering, I have a real good one now . Second question is at what point of recovery do you leave the hospital, after my 3rd treatment I feel about 75 percent back with a small foot drop still and I elected to skip a 4th treatment to save money and because I was getting cabin fever.

    • September 3, 2013 at 7:58 pm

      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

    • September 3, 2013 at 10:51 pm

      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!

    • September 4, 2013 at 12:19 pm

      Jim thanks for responding, I want to do plasma therapy as a outpatient but not sure about the semi- permanent ports. The temporary ones are bad enough, how do the other ports feel, are the bothersome and how do they access the port?

    • September 4, 2013 at 11:30 pm

      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!

    • GH
      September 10, 2013 at 9:47 pm

      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.