AnonymousJuly 28, 2012 at 2:46 am
can anybody who has had plasmaphoresis describe the experience… my doctor wants me to have it. im very nervous. is it painful? i have ivig every month and take 10mg of valium before the nurse starts my iv because i am so anxious. im wondering if i will need heavier sedation for the plasma exchange procedure… any words of encouragement would help. im a nervous wreck !!! steven with CIDP Dx 2005.
July 28, 2012 at 7:09 am
I had plasma exchange after two five-day rounds of IvIg failed to arrest the progress of loss of strength. My neurologist was wanting to do it after the first round, but decided to do a second round as a more conservative approach which sometimes works (it didn’t). A week or so after my second round of IvIg I crashed and ended up in the ICU to get plasma exchange. I was apprehensive about the procedure, but by that time my reservations didn’t matter. The PE doctor offered to explain it, but I told him to explain it to my daughter — I don’t like to hear too much about medical procedures.
I had a Quinton catheter put in my leg for access. Sometimes a catheter is put in the neck instead. This is the worst part of the whole procedure, but as it turned out in my case, the apprehension was everything. The catheter was put in under heavy sedation. I have no recollection of its being installed. I was groggy for awhile coming out of it, but experienced no pain whatsoever during or after the procedure. According to my daughter, I said some strange things under sedation, so you might want to consider that possibility.
I had nine PE treatments. They were all completely painless and I had no other side effects. Most of them I slept through. I was in such bad shape when they were started that I don’t recall much during the time I was awake. By the last couple of treatments my recovery had started. I went off pain meds somewhere in the middle of the PE treatments and was feeling much better, so I was able to watch the whole procedure. It was definitely disconcerting to see my blood being pumped out in such a large quantity (about 10% I think), but everything went smoothly. My catheter never got infected, which is one of the main concerns.
When the catheter is removed, no anesthetic is required. A nurse just pulls it out. She told me to do some breathing thing as a distraction, but there was absolutely no pain associated with removing it. Then she put on a pressure dressing, which takes a few minutes because she must apply pressure until the wound starts to heal. Then there’s a critical time for an hour or two to make sure the dressing isn’t leaking, so it’s necessary to be awake and able to call for help if necessary (it wasn’t). The nurse showed me the catheter. She didn’t need to do that. It was a lot bigger than I expected!
It’s impossible not to worry about it at first, but if your doctor wants it, go for it, because this is something that can work well. My condition turned around during PE, and by the time I finished the treatments I was off pain and anxiety meds and feeling good. Take sedation when the port is installed, but you don’t need anything when they hook up to the port and do their thing. There’s nothing to it. It’s good for you.
By the way, my description is of an in-hospital procedure. If you are not in a hospital, you may be having an outpatient procedure. The port would be different and I don’t know anything about that. It can only be easier than what I had, I expect. Good luck!
July 28, 2012 at 8:03 am
Just had my 500th plus plasma exchange today which is why I am on the computer at 3 in the morning. I get an infusion of 1000mg methyolprednisone after my exchanges, so I stay pretty wired for about 36 hours.
Had my first exchange back in 1996 (CIDP diagnosis in 1995, GBS in 85) after IVIG did not help and it was not a big deal. Sometimes, on the first exchange there can be a drop in blood pressure causing you to faint (which was me), but did not lasting effects and I walked out of the hospital about 30 minutes after the procedure was completed. The worst part about the exchanges is the time. If you have a port put in the time is shortened considerably.
About 2/3rds of my exchanges have be done using vein punctures (18 ga pharesis needles) in each arm. I use a numbing cream applied about an hour before the procedure and I seldom even feel the needles sticks, and I hate needles. Using this method it takes between 90-130 minutes to complete my 3 liter exchange. I don’t feel anything during the procedure and watch TV and talk to my nurse. The only problems I have had is an occasional flow problem when the needle doesn’t get set in the vein just right which sometimes requires a second stick. There have been a few times over the years when a vein has given up and blown out which hurts a little and usually swells. When this happens, they usually go to a smaller angio-cath needle (22ga) which allows them to use a much smaller vein as the return line. This causes a little anxiety(the 10 mg valium should be sufficient) but I have always been able to complete the procedures. I drive myself to the hospital and home after the exchanges with no difficulty. When I get home I do put ice packs on each puncture site, 20 minutes at a time every two hours to minimize any bruising.
I have had five perma-caths put in. These cut the exchange time down considerably, 70-75 minutes for me. My caths all had exposed lumens which had to be tended using sterile fields, mask, gloves, etc. and had to be flushed with heparin every week. Unfortunately, each got infected and had to be removed, which is why I am doing the vein punctures again.
Currently have exchanges every three weeks now but the number of exchanges is finally catching up with my veins in the form of scar tissue so I am now looking into the new ports which are implanted just like a pacemaker. Since they are under the skin with no external parts, infection is extremely rare. I have a post under Vortex ports as I was looking for some one having this type port to get there feedback.
I have also looked at the Power Port.
Hope this helps ease your concerns some. For me the reality is, plasma exchanges have always been my go to treatment when every thing else failed to help me when I have relapses. Pretty sure I have been on every CIDP treatment mentioned on this site and even tried three MS treatment protocols. Sorry to ramble, but feel I’ve been down the PE road much more than most and wanted to share my experiences.
Please remember everyone responds differently to the various treatments, so what works for one may not work for another. You and your doctor have to stay proactive and find what works best for you. Hope the PE helps you as much as it has me. Keep us posted.
AnonymousJuly 28, 2012 at 11:09 am
OMG thank you so much for the replies… i feel a little more at ease already… i think its all fear of the unknown as usual. i just hate needles so much… as i said, i still get worked up every month before my IvIg Tx… hence the diazepam 10mg beforehand. it certainly is a challenge, as you know, trying to keep this disease in check and still maintain a happy life. thanks again…. Steven
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