Hi all,

I had consult with a surgeon re: thymectomy and he told me I should start plasmapherisis. The nurse explained that I would get a double lumen port and get treatment that way, and then after a week or so I could have surgery.

When I went back to my neuro he said it cannot be done thru double lumen port, that I need to be admitted to the hospital and have a huge catheter in my neck?!

Am I losing my mind or does that sound ridiculous?

The way the surgeon explained it, it sounded like plamapherisis would be similar to the IVIG, and that it could be used as a maintenance tool, but my neuro said no way.

Good afternoon!
I had my trans sternal thymectomy 4+ years ago. I was admitted December 15th and had 3 plasmapheresis treatments before my surgery on December 20th. (15th, 17th, and 19th). Mine was administered through a femoral catheter that was removed shortly after my last treatment on the 19th. I was told that the reason for the plasmapheresis treatment was to give the immune system an extra boost before the surgery.

Do you have a surgery date yet? Which surgery are you having?

Lisa

I've had my 57th Plex/Plasmapheresis by my arms veins with no issues whatsoever, when I was hospilized they I had a port in my neck inserted but I couldn't stand it especially trying to sleep and shower with it so I had removed and ever since have been using my arms viens without a hick....

Hi Lin_Z,
Like Snoel, I've been treated regularly for the past 5 years with PLEX through my arm veins. For the first exchange, they installed a femoral port which didn't work well. The plex team after looking at my veins, told me that I didn't need such a port and since then, they have been working fine through the arm veins. So, my advise: have the plex people look at your veins and decide what is suitable for you.
Maurice.

I had a 5-day course of plasmapharesis in hospital through a central line; a large catheter through the neck. Maybe the admission requirement has to do with the management of the catheter: keeping it clean and protected. It was a surgical procedure to install it, and since it was going into my jugular vein, if something went wrong, Bad Things could happen.

I was starting crisis when I was admitted, so they decided to "go with the big guns", as my neuro said. I was in pretty bad shape: could barely walk with a cane, couldn't swallow anything other than liquids, one eye closed, speech slurred, etc... After each treatment, I could feel improvement. I was back at work a week after I was released, and kept improving to get back to normal.

Now when I go in for labs, when the Tech says "big stick" to warn me of the needle, I say "That's not a big stick, (pull down collar) This is a big stick."

I deal with the assorted crap that has hit me in life with a sick, twisted sense of humor. If they get a bit snippy, I tell a few of the things I've survived, so they know I've 'earned it.'

**

Just my experience, yours may vary.
Best of luck.

I get maintenance plasmapheresis through a dual lumen vortex port, so it is not impossible. A lot of doctors are not familiar with this, so if you haven't already had this done, you may want to research it and inform your doctor.

Neither my surgeon nor my hospital had done one before, but I get my plasmapheresis through Red Cross, so they were very familiar with the dual ports.

I'm just curious to hear on how many of you are on weekly Plex's/Plasmapheresis, I just can't go past 7 days or symptoms get pretty evident weakness & pain in muscles in general, facial numbness, slurry speech by midday...

I'm going on my 63rd tomorrow (started Apr 2015) they exchange 4 liters! now my iron and red blood cells are extremely low due to all plexs...

I get mine every other week, and I'm usually run down by the time it rolls around.
I used to have them three times a week and that was not even enough, because when I had to wait two days over the weekend, I had a bad crash and had to be taken to the ER.
The only thing I know that has made the difference, all things considered, is that I had Rituxan, and I think the residual effects of that has allowed me to go longer between treatments.

Snoel, Have they checked your kidney function?

Annie

I think they do every week, they take 2 vials of blood before every plex, I had low Iron levels and red blood cells were very low and started taking 600mg of Ferrous Fumarate daily. My red blood cell count went from 99 to 118 in the last 3 weeks, I still feel very SLUGGISH I'm weaning off preds I'm down to 1mg and hoping by this time next week to be off! My Rituxan hasn't improved things so far, I've had my last infusion may 10th my specialist told me it could take up to 8 weeks to kick in...