FINALLY getting my port or shunt!
 

Hello all!:D 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!:D

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:D

Hi 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.

Hi Rach!
 

Hey Hon!:hug: 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!:D He is a night owl (like I used to be) so he wants to talk at about 2:30 every morning.....LOL!:D

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!:D

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

Hi Pat!
 

Hey sweetie:hug:! 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!:D 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:D

Have a GREAT night!
Erin:D

Hi Brennan! -
 

Hi Brennan! THanks so much! I am so ready for no more neck straws!:D 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!:D

How are you doing?

Big hugs!
Erin:D

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. :hug:

ckitty

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

Hi Erin
 

That is such great news about the port or shunt! It will be such a boost not to have to endure the trauma of trying to get a good stick. It should make things a little easier. Will be praying for icknerd.

Hang in there about your sister and niece moving. My son moved to San Diego (he is a research scientist) and my daughter is in Virginia (with my precious grandsons!). It's hard but you can still stay close. It's just important to make sure and keep phone calls at the top of your priority list. Web cams are great, too.

Thinking of you and wishing you good days ahead.

Hi Erin,
Im still very up and down almost hour by hour. Im certainly not the worst Ive ever been. Its just my muscles seem to be constantly fatigued instead of me getting some respite. Mestinon seems to be only lasting around 2 hours before I can feel everything becoming sluggish again.

Ive asked my consultant for all my test results but thats yet to elicit a response.

Ive heard nothing from the 4 people I have contacted and will now ask for a direct referal. It seems so much easier in the states to see different people here everything has to be done by referal.

Take care,
Love
Rach:hug:

Hey Pat!
 

Thanks for the info! I think of the 2 - IV IG gives me the BOOST sooner, but the actual plasma exchange will aid in my goal of remission!:D

Now I just have to wait for the mountain of paperwork to be handled by my insurance company in order to have my port/shunt put in!:D

Devon is STILL @ my sis' house, so it has been quiet, but we are planning on going to our friend's home 2morrow night for a spirited game of cards! YAY!
I NEED nights out like that! They are so thoughtful to have us over - that way I won't worry about my home looking like a tornado just blew through!:D

Do you have any plans for the weekend?

Big hugs!
Erin:D

Hi Ckitty60!
 

How are you today, hon? Are you OK? I am being a big ol' wart hog - just relaxing on the sofa, gearing up for 2morrow - Lilli and I are going to have "girl" time and then Mike and I are planning on going to play cards - YAY!:D

Yep, the straw thing is a real deal breaker for me - just gives me the heebie jeebies and hurts like heck! I was hoping that my neuro would OK someone coming to our home to do my treatments, but he said there isn't anyone in own that he truly trusts with my health, so I'll have it done @ Cancer Care Centers and SLEEP wth my hubby! YAY!:D

I have met sooo many amazing people @ CCC! They are truly amazing! I love being around all of their positive energy! IT makes me appreciate EVERYTHING/EVERYONE even more!

Have a great weekend!
Erin:D

Hi Simon!
 

HEy there - movie star! How are you? Are you FINALLY feeling better? Have you gotten ANY rain there? It is truly miserable here in SA. We NEED rain right now! :(

I've got big bowls out for all of the critters, but am thinking about buying some troughs for them - I can't stand the thought of ANYTHING being hungry or thirsty!

I am being a bum today - it feels glorious! 2morrow will be a busy day, so I am trying to rest up NOW!

Big hugs!
Erin:D

Hi Shar!
 

Hey Shar! I am sooooo excited about the port/shunt! It will make my life so much easier!:D

I'm still kind of in shock about Lilli, is that nuts?It's like I'm stuck in the denial/anger/depression cycle. I still cry every night - just thinking about my beautiful baby girl going away, but can't control it, so I guess I'll have to go with it!:(

I'm already planning on writing her EVERY week, as well as sending videos and buying her a locket with our pic inside...........:D

Hope you are feeling GREAT today!
Erin:D

Hi Rach!
 

Hey sweetie! I know what you mean -I'm taking my mestinon every 2 hours instead of 4 right now, but this heat is wearing me out! I thought I'd have more ENERGY @ 40 mgs of pred, but not quite yet!:(

Hope you feel better soon!

love,
Erin:hug::hug::hug:

Erin,
I'm just trying to stay out of the heat. I have a busy weekend ahead with some heat involved, so I'm trying to conserve today. I've been doing real well since the IVIG last week, but just some twitching in the eyes which is driving me crazy....other than that...strength is good. Take care and stay cool!!
Hugs,
Simon