NeuroTalk Support Groups - FINALLY getting my port or shunt!

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NeuroTalk Support Groups (https://www.neurotalk.org/)

- Myasthenia Gravis (https://www.neurotalk.org/myasthenia-gravis/)

- - FINALLY getting my port or shunt! (https://www.neurotalk.org/myasthenia-gravis/93741-finally-getting-port-shunt.html)

SharS

07-15-2009 11:56 PM

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.

rach73

07-16-2009 05:11 AM

Quote:

Originally Posted by erinhermes (Post 538054)

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 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:

erinhermes

07-17-2009 01:11 PM

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

Quote:

Originally Posted by Pat 110 (Post 538167)

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

erinhermes

07-17-2009 01:17 PM

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

Quote:

Originally Posted by Ckitty60 (Post 538175)

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

erinhermes

07-17-2009 01:22 PM

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

Quote:

Originally Posted by TxSimon (Post 538196)

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

erinhermes

07-17-2009 01:27 PM

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

Quote:

Originally Posted by SharS (Post 538245)

erinhermes

07-17-2009 01:31 PM

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:

Quote:

Originally Posted by rach73 (Post 538291)

TxSimon

07-17-2009 03:01 PM

Quote:

Originally Posted by erinhermes (Post 538903)

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

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