I thought I would write a step by step process of having plamapheresis. I found the experience rather overwhelming and wished I had been able to find this information. I just want to remind everyone I was a patient so this is my point of view as a patient, and I am not a medical professional in any way. I hope this is helpful to someone.

First you get the pheresis catheter inserted into your neck. They take you into the angio lab, after you change into a gown. All the doctors and assistants are in scrubs and hair nets as well. I had to lay on a big flat table,
they had a table beside me laid out with lots of tools and blue drapes. They informed me at the time that they would give me a pain med, something to relax me, and a local anestetic. They were going to give me phentenyl,
versaid, and lidocaine. I did not get versaid or the phentenyl because the doctor was unaware I had MG and did not know what kind of meds I could not have. I could not be sure these were not on the list at the time so I opted to only have the local. The doctors insisted many people did this and got through it fine. Wish I had known the meds were safe.

Then they clean the area, and have you turn your head all the way to the opposite side they are going to insert the catheter. Then they put the blue drapes around the area, honestly the drape somewhat covers your mouth and nose. It will probably not bother someone who has had the other meds. They then have a big machine that goes over you to map
your veins and arteries. Then they begin to insert the needle into the vein or artery they want until they can see it. Then they replace the needle with small tubes down to where it is supposed to be, typically 6 inches in. They then put dialators in, which is the most uncomfortable part. It kinda feels like someone is trying to shove something into your neck. Which is of course what they are doing. There were a couple of times that they had to give me more lidocaine because I started to feel sharp pains. You then have two tubes or lines sticking out of your neck that they stitch into place. Your neck will feel very very uncomfortable for several days. And then after a few days or more it will not feel so uncomfortable and you should not need nearly as much pain meds to tolerate it.

I then went to the Apheresis Unit to receive my treatment. They hook you up to a somewhat large machine, and replace your blood with a liquid that your body thinks is blood. Or so they told me. On average it takes an hour
and a half for the whole process. They said that some people feel the liquid is too warm. I felt it when they ran the blood back in, it felt cold. They said that is usually the case. Usually you need 3-5 treatments over a period
of 5-7 days or more. I received 3 treatments, one every other day. Personally I felt quite drained the day of the treatments, but amazing the day after. I was glad to have the catheter out a week later. They simply remove the stitches and pull out the lines. You then have to lay relatively
flat for 20-30 minutes. I hope this is an adequate description to be of some help. Any questions or if anyone wants to add on that would be much appreciated. Hope this helps someone!

Momma, what a procedure you have been through! Let us know how well this works for you.
Mary

Actually I had this procedure before I had my thymectomy on April 14th. It was very hard to judge how well it worked, since surgery wipes you out completely. But I felt fantastic the day of surgery. I cant even imagine how I would have felt after surgery without it. I woke up to the doctor saying she should probably re-innubate me. I begged her to give me a lil more time or a bipap machine. She let me see my family first, thank goodness I was better enough after that, that she decided to just keep a very close eye on me.

Mine was very similar, except I wasn't given the option of ANY pain meds, only adavan (like valium, but the dr said it would take too long) or benadryl - I chose the benadryl.

I was sobbing like a baby the whole time, but nurses were truly AMAZING! They held my hand and prayed with me the whole time.

Unfortunately for me, they knicked a nerve when they placed the line, plus since this was my 2nd time for the exchange and my platelet count is waaaaaay high, the stupid dr had to really "dig" in order to get through the scar tissue.I stated cussing him out and told him he was hurting me! I was ticked off! The dr told me to count to 30, so I did, really fast,,,,,,too fast.....the dr said "Give me a break", so I started over - after 15, the line was placed.

Once the line was placed I was taken to recovery where I rested. Then I was taken to my room. I was given the exchange for 7 days, followed by 5 days of IV IG - I was exhausted!

At that time, money wasn't tight like it is now, so we opted for the suite - that way Mike could stay with me - we loved being alone together! We played cards and watched movies all night long! Sounds goofy, but it was romantic!

As for the plasma, mine was warm. The hosp has some type of warming machine so it isn't too cold going back in.

Don't get me wrong, if my neuro told me I needed it again, I would go in. No questions asked, but I did not like it - not one bit.

I am terrified of needles so that was my overwhelming fear. If you are not, then it won't be so bad. Plus, when you need it, you need it. It DOES help!

Just don't look in the mirror with that thing in your neck - it's UGLY! LOL! My sis called me "Frankie" for frankenstein and my FIL had a hard time looking @ it, but it does the job.

I have 2 little scars on my neck, but have overcome my fear of needles - life is just too precious to let fear stop you.......

Erin