Hi - haven't been around much - went five long weeks without IVIg before getting it approved again - now getting it every two weeks again. I had to get a port. They wouldn't consider Sub-q so.... The nurse in the surgery department said,"You'll just love it!"...hmmm, Love is not the first word that jumps to my mind. Prefer it over getting stuck with a needle five times, but 'love it'...I don't think I love it yet! Maybe it is one of those things that you eventually grow to love...I think I'll grow attached to it but never love it! Forgive me my sarcasm - it is all I have left...
Gabrielle

Hi, Gabe!! So glad you got the Ivig approved again. I'm sure those were the longest 5 weeks of your life! What kind of a port did you get? My only personal experience with ports is the catheter kind my hubby had when he was getting chemo. He was too heavy for the normal kind.
Hugs,

Hi Lois,
It is made of Titanium and I think the manufacturer is Boston Scientific - the product name is Vaxcel...they cut a slit in my neck to thread the catheter in and then made a pocket under the skin below my right clavicle for the port. It is nasty looking right now but I imagine that it will just look like a bump with a scar above it later. It is about the size of a quarter... I just didn't want to get one because it feels like another concession to this disease but I guess it is what it is...I was very relieved to get IVIg again - it was a very long five weeks. How have you been? It has been beautiful in Minnesota the last two days but I guess a storm is headed our way for the weekend. The sunshine and 50 degree weather sure felt good after that stretch of sub-zero temps. I hope things are going well for you.
Gabrielle

Things are beautiful here in Tennessee! It seems like spring is here! I can't say "finally here" because we never really had a winter this year. January was super warm for our area, and really only the first part of February has been wintry. Bet the bugs are going to be fierce this year!
My hubby had the kind of catheter port that started about his upper chest, tunnelled under the skin up to a vein in his throat, followed that down and ended somwhere near his heart, if I'm remebering correctly.
But it served him well through all of his chemo treatments, and was only finally taken out near the end.

Lois,
The port that you are describing sounds like the same kind I have...They threaded it through my neck and said it ended just above my heart.

Just when I was bragging about our Spring-like weather, we had a foot of snow! So it looks like Winter here again - the snow is a pain but it is pretty!
Gabe

His actualy had 2 catheter ends that stuck out and dangled from his upper chest. They weren't able to put in the kind that would have been all under the skin. He has a very hefty man, my hubby! Very muscular, but also very heavy. They had the same problem when he went in to get a feeding tube put in his tummy. He just had too much tummy, and they didn't have one long enough to go all the way through. And the really aggravating thing about that was, I called them several days before the procedure, and basically asked them if they could get through all of his fat. No problem, don't worry, we do it all the time--Almost like, don't be an idiot, we know what we are doing. Right! Then the doctor had to come out and tell me they didn't have a tube long enough.

I LOVE MY PORT! I had been getting my treatments biweekly for over 2 years and my veins were disappearing quickly. 5-7 pokes were the usual. *I* had to bug my neuro and my family doc for over a year to get one of them to agree to a port. They were worried about infections and I told them, "you try getting poked around and bruised...". If you look on Flickr with myasthenia portacath you should come to a couple of photos of my port.

Question: why did they decline the sub-q?

My neurologist said that the sub-q is too new and hasn't been proven in long term trials to be as effective as IVIg for Myasthenia...

I still don't love my port...it is quite irritating still. The wire in my neck seems to be in just the wrong spot when I am trying to go to sleep. I'm skinny and have a bony chest so it is quite prominent and just under my skin. I prefer it to the 5 needle pokes and infiltrated Iv's though.

Thanks for the update, Gabe. I had been wondering how things were going with your port. I guess you're just not "port-ly" enough for comfort. Sorry about that, just can't resist a good pun.
Hugs,