So I had my plasmaphoresis today - it was AWFUL! My genius husband and doctor didn't tell me they'd go through my jugular, so I get to the hospital thinking I'm getting a PICC line - nope! Never again! NEVER, EVER again! I feel so violated, and it hurt like nothing I've ever experienced before. I'm usually a happy person, but I feel like I was "handled" by both my doctor and my husband, so I'm beyond mad............I've been crying for the last hour with no end in sight. Never again!

oh erin, i am so very sorry.

gentle gentle

Did they numb you first?????? Are you still in the hospital? Can you try to stick it out, it may be of great help to you.
If you are still in the hospital and the vas cath hurts you tell the staff. I can't tell from your post if it hurt placing it or if still in, does it hurt you? I hope to God if it was when they placed it, they gave you a local. Try to calm yourself, the stress isn't good for the M.G. I know it is hard. Have a nurse in the pheresis unit maybe go over everything with you. I hope you are doing better now. This is not easy. PS did a resident place the cath. I learned the hard way, have the interventional rad. place it. If the catheter is still in and it hurts, tell the staff.

They did, to a certain degree, however I kept telling them that I could FEEL the procedure and they kept on going........AUGH! I've had IV IG in the past and it was wonderful, so I couldn't understand why I wasn't getting it this time. MY neck is still sore as heck, but I'm getting out of here on Friday, so I'm really grateful! I think the worst part for me was the element of surprise involved . . Now I know my hubby loves me and my doctor was just trying to not freak me out, but it was really scary when I got here and was told they were going through my jugular - worst fear ever!!!!!!!!!THank you for all the information - I really appreciate it!

I'm sorry you have to go through all of this..it seems unfair to tell you your getting a PICC line and IVIG and then give you a IJ central line and plasmapheresis.

This all had better work for you...I hope you start to feel better soon

You are in my prayers

Erin,

I'm sooo sorry for you having to tolerate that. I'm not familiar with some of the things you mentioned, but anything poking into the jugluar and feeling it...
YEESH!

I promise I'm not making light of the situation, beautiful... but some male advice?

Your doc and the husband... CUT OFF! until further notice. (Just keep the doc at bay, and push hubby even further, milk this one!)

Beyond that, I hope you at least get some good news from the procedure.

Erin, I too am sorry you had to find out that way. I had no idea either. Are you home now?

Hey there! I'm still at the hospital - 5 days of plasmaphoresis followed by 4 days of IVIG.......Today has been MUCH better. I always feel great after my IV IG's, though I still fear the needles big time! It has been so great that my doctor told my nurse to "keep feeding me whatever they have been" b/c I'm so much happier now. I'm still scared of the line in my neck and really worried about when they take it out, but do realize how blessed I am to have such great doctors......

I laughed sooooo hard when I read your line about "cutting off my hubby" - done! At least for a while, cuz' I'm going to have to be here for at least 4 more days (now I've got 4 IV IG treatments set up)..........Trust me, avoid plasmaphoresis if you can. It was really bad. Really, really bad. I just started on Cellcept and am hoping for remission ASAP. I just had a thymectomy April 22 so I really didn't expect to be here so soon, but you never know......Anyways, thanks for your advice! It was great! I hope to hear from you again soon! Erin

I know, between the 2 of us we haven't had much luck have we? I just don't get it. You hear stories of people who go into remission immediately and are perfect and then you have me..........Have you ever had plasmaphoresis? Ever seen it? It was gross! 5 days - and now I've got 4 days of IV IG -, but that always makes me feel better........How are you? I've been worried about you ever since I read your blog about it probably not being MG. Hand in thereLet me know if you need anything!