Hello all! Talked to my neuro on Monday and he FINALLY agreed to allow me to have a port put in - either that or a shunt. He plans on me having the plasma exchange every 6 weeks for quite some time - no idea how long right now.......but being able to go back down on pred is always a good thing! I'd love to lose those pesky 40 lbs.....lol!

Just wish I could have had this done sooner. Dr. I also mentioned (for the first time) that MG is a "chronic" disease - well....duh! I think HE thought I'd go into remission by now, so he's trying to warn me............

Hope this finds all of you happy and strong! Let;s remember to keep icknerd in our prayers - she has her thymectomy scheduled for tomorrow!

Big hugs!
Erin

Good luck with the port / shunt.

I know what they are, but I dont know if they have a range of places that they put them? Do you know where yours is going.

Hopefully that will make things easier for you

love Rach

Hey Erin,

That's so good he's having that put in. I hope you do well and feel stronger on the plasma exchange. I felt great after having mine, it just took a while to kick in. Glad you are having the pred reduced too. Take care.

Hugs,
Pat

Congratulations Erin! No more straws hanging off your neck everytime you need an oil change; and if they run it there anything like they run it here, if you have the port in you get to do the plasmapheresis on an outpatient basis.

Hey Hon! How are YOU feeling today? Are YOU feeling better?

I'm feeling pretty good - Devon is with his aunt and uncle, so tonight I am going to bed waaaaaay early! He is a night owl (like I used to be) so he wants to talk at about 2:30 every morning.....LOL!

If I get the port, it will go in y chest (between my boobs). If I get the shunt, it will go in my arm. Either way, it is going to be GREAT! No more sticks! I am so happy!

Can;t wait to hear from you!
Love,
ERin

Hey sweetie! How are you today? How long did it take b/4 you felt the effects of the plasma exchange? Does it usually take a week?

My sweetie and I are alone tonight which means one thing: going to SLEEP early! He's already down for the count, and it's only 6:30 here! LOL!

I'm going to have the exchange every 6-8 weeks for quite some time - a long time, but am looking forward to no more pricks! My little veins have given up on me! LOL

Have a GREAT night!
Erin

Hi Brennan! THanks so much! I am so ready for no more neck straws! Last time I was in, I had to have pain meds and morphine every 4-6 hours - not fun!

I will also be able to have it done on an outpatient basis - which is HUGE b/c every time I'm in the hosp, I am CHARGED whenever a dr sticks their head in my door...........hate that!

I'm going to have it done every 6-8 weeks for a looooooong time, but I KNOW remission is around the corner!

How are you doing?

Big hugs!
Erin

Hey Erin,

I'm feeling much better and stronger, thanks for asking. Thinking back, I would say it took just about a week. I had three exchanges, 8 bottles each time over a 6 day period. I couldn't believe how much stronger I felt. I know it had a lot to do with how well my surgery went and recovery. One thing it didn't help was the double vision, but the mestinon took care of that. I'm so glad you don't have to get stuck all the time now and you can go home after you have it. Plus it doesn't take too long. Well, you have a good nights sleep! Take care.

Big Hugs,
Pat

Erin,
Glad to hear about your port. Getting to do the plasma exchange outpatient sounds good. I am not familiar with the whole process but sleeping in your own bed always sounds better than trying to sleep in a hospital. Not having the needle the size of the straw in your neck sounds really good! Hope you are feeling stronger. I will remember to be praying for icknerd. I hope he does great tomorrow. Hope you have a good night and can get good rest.

ckitty

Erin,
So glad things are working for you......a good nights rest sounds great! Take care and stay in touch.
Hugs,
Simon