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
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
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!
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.
You must be logged in to reply to this topic.