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morgan617

By morgan617
in Dysautonomia Discussion

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morgan617 Newbie

morgan617

Posted
Posted

Hey all, wow what a lot of new people!

For the new ones, welcome from an absentee old timer, for those of you that remember me, here I am still kicking.

Just thought I'd give an update. As some of you know I had been walking around (sort of) with pulses of 30-180. No happy medium here.

I had a Medtronic (Thanks for all the input, it was a BIG help) dual chamber pacer put in 9/08. They had a lot of trouble with the ventricular lead, but finally got everything working. I even managed to vasal vagal and hurl and they got to see it working before I left the room! :)

They then started me on a whopping dose of betas to slow my rate down. So the pacer keeps it at 60 and the betas attempt to keep it below 100. Now it's fatigue from betas and just fatigue for no apparent reason, as I'm sure you all understand.

I actually did okay after the insertion, although, due to weight loss, it was a very tight fit. I told him if he was going to do an implant he could have at least done both sides...har har. I have found a very good cardio at last, with a good knowledge of periodic paralysis, and ans issues.

Anyway, was okay till they decided to "tweak" it as they call, it. Then was miserable again. Went back in and had them tweak it back to where it was and am doing better. Now am trying to get used to whopping beta doses. My bp is still way too high, usually 180/110 and my pcp is still having cows about that.

I use a wheel chair or my power chair most of the time now. like 99%. I'm down to getting my esophagus dilated every 8 weeks as opposed to every 6 months. No feeding tube yet, but talking about it more frequently.

I have to say since the pacer, i am more like like my happier old self, so hope to be on more. Don't like to crank and whine all the time. Hope all of you are doing okay...NICE to see you posting EMMY, hope that means you are doing better!!!!!

morganzillathehun

jenwclark Newbie

jenwclark

Posted
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Hi, Morgan.

You were getting your pacemaker right about the time I joined the forum, so I got your story mostly from other people posting updates. A lovely demonstration of the support and concern in this community. Glad to hear you sounding upbeat, and I hope you and your doctors get the wrinkles smoothed out.

spike

morgan617 Newbie

morgan617

Posted
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Thanks spike! This is a supportive forum to be sure! I have been very remiss, but have been in a potshole for quite awhile. I think i can see a peep of light now....keep your fingers crossed!

The pacer at this point has been a positive experience for me. it most certainly isn't a cure, but it does help me from passing out with no warning from long pauses. I think anymore that ANYTHING that helps in any way is a good thing and worth it. Getting a laptop has been a real boost too, as for most of us sitting up at one is difficult at best and impossible at worst.

The mouse has been another story! Talk about typos, LOL. My hubs finally gave up and got me a little mouse to go with it, and that has been a real help! I'm a finger pecker typer and then you've got this touchy little bugger that won't won't work one time and then the next time you send an email meant for one person to 22! (flamo face moments) But the mouse is a big help.

MightyMouse Newbie

MightyMouse

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Hey there Morgan,

You've sure had a heck of a trip, eh? I was glad to see your name again in the forum listings... I know you've a hard time for the past few months.

Nina

Dizzy Dame Newbie

Dizzy Dame

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Morgan it's so good to see you! I've been worried about you over the past few months, so many of the old-timers are having bad stretches lately.

I'm glad they finally got your pacer working right, but I'm so sorry to hear that your GI issues are still horrible. I really hope things begin to improve in that arena.

Anyways, it's so good to get an update from you, and to know you're okay. As always, you'll be in my thoughts.

Hugs,

Lauren

briarrose Newbie

briarrose

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Welcome back Morgan!

I'm glad to hear that those dang doctor's finally did something productive for you instead of giving you a bad time. You're finally in better hands :) Hope you told your old quacks a thing or two.

I haven't been on much lately either, busy working, taking care of the kids and advocating for POTS patients in real life instead of online. That should tell you that I'm doing better most days, not to say that I don't have my daily symptoms but I guess I've learned to live with them mostly.

Take care

Steph

Gena Newbie

Gena

Posted
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HI Morgan

I haven't been around much either. But it's nice to see an "old timer" posting again! HA!

I am so glad that you are getting back to your "normal" self. :)

Have you had any more episodes...If i remember correctly one whole side was going numb like you were having a stroke..did they ever determine the cause?

Regardless, I'm just glad to see you back. Hope to see you around more in the future. :)

Hugs,

gena

Sunfish Newbie

Sunfish

Posted
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morgan -

so good to "see" you. thanks for checking in with us. i know what you mean about the laptop; i wouldn't be online hardly at all if it wasn't for my lifeline, aka laptop. so glad that you have one now.

it sounds like you've continued to go through the wringer but hopefully are getting at least a tad bit of relief from the pacer...though not without it's own added issues (is this ever not the case with anything?)

and yep, there are loads of new folks, eh?

keep on hangin in there - i know it's easier said than done at times.

:) melissa

p.s. things continue to be pretty crazy on my end too, though i'm also hanging in there. to hear my latest you can check out my new website that's in my signature.

DancingLight Newbie

DancingLight

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Morgan, Morgan, Morgan!!!!!!

If I could I'd be jumping up and down with excitment just at seeing your post! :) Since I can't do that though, my cheering will have to suffice.

I was sooooo thrilled to see your name pop up. When I haven't seen someone online for a while I check to see when the last time was that they logged on (people are gonna think I'm a stalker after they read this, aren't they? :) ). Anyways, you hadn't been on for a while, even to lurk, and I was soooo worried.

I am so grateful that you have a laptop! It is the only way I could ever get online at all. And, the extra mouse is a very nice help! I have one too!

Thank you so much for checking in with us. I hope that with these docs paying a bit more attention, (or so it seems!), you will get the attention you deserve. I know you are still feeling pretty poopy, but do hope that you stay a bit more stable and able to log on and at least not have such horrible episodes as you were having before, ya know? I don't have Harry Potter magic...wish I did...so until then, I'll just hope for better and better days for you and stable days.

I've missed your posts so much, Miss Old Timer!

There are so many new folks...I get to post a couple of times a day I think now, so most folks I haven't 'met' yet! Hard to keep up!!!!!

Thank you so much, again, for checking in, you've been missed and my worry gene was in high gear!

Love, Em

morgan617 Newbie

morgan617

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Thanks again everyone!

I think now that more and more tests are showing things going wrong, they can't ignore it anymore. I'm not sure that's a good thing, but at least things get done now and they are listening more. No one calls me cuckoo anymore! :)

My pcp that I've had for 23 years, finally admitted he was having a very hard time dealing with it all. he never really thought we'd be going down these roads...ie...pacers, feeding tubes etc. But now realizes he was in denial, due to the frustration of this weirdo illness and not being able to "fix" me. And because he says he cares about me so much....what a sweetie.

We are very much on the same page now, as is my cardio, and gastro. it sure does make a difference! Not only from a physical standpoint, but an emotional one..... :)

dizzygirl Newbie

dizzygirl

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good to see you back morgan!!

:)

calypso Newbie

calypso

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Glad to hear you're alive, Morgan! You sure have been through enough and then some. Hope things continue to get back on track and that you have some competent doctors to work with.

Amy

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