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Old 11-30-2012, 07:34 PM   #1
disfan07
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GAC or wheelchair?

So back story is that I am having some undignosed problems with my heart (we think....)

There have been times lately when if I am standing for too long, I turn pale, my lips turn blue/purple and I have a huge exacerbation of my PVCs and palpitations. In addition, we have figured out that if my blood pressure drops, so does my heart rate (it's supposed to increase!). In the ER last weekend my blood pressure was 75/30 which wasn't a surprise because I was dehydrated but what was a surprise was that my heart rate dropped down to 40BPM. That's not the first time that has happened.

So right now, we are in the middle of trying to figure out exactly what is happening (I am wearing a 14 day heart monitor right now)

But I know my cardiologist is not 100% thrilled with the fact that we are going to WDW in a few weeks but she has approved the trip.

She wants me to wear compression stockings to try and help with the symptoms I have while standing and I know I just need to make sure I am hydrated.

But I am assuming that for something like this, my only option would be to rent a wheelchair? Not a GAC right? Basically I seem to only have problems when standing still. So walking the parks won't be a huge issue but standing in lines is where we would encounter problems. We are going during Christmas week so I know it will be crowded and we have at least 1 TS meal everyday and we plan on taking it slow but I was just wondering if we had another options besides renting a wheelchair.
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Old 11-30-2012, 08:00 PM   #2
SueM in MN
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A GAC won't help much in that type of situation. You might even be standing still more with a GAC than you would otherwise. Each attraction has different accommodations, but very few attractions include a place to sit unless you have a wheelchair or ECV.

With those types of symptoms, I agree a wheelchair would be your best option. If you feel like walking for a while, you could park it, walk behind it or someone else could push it while you walk.
I would not recommend an ECV for someone who could possibly feel faint or pass out. The driver of an ECV has to be alert to people suddenly stopping or darting out in the ECVs path. Plus, if you are not feeling well enough to drive it, no one else can drive it while you ride.

I hope you find out what your problem is.
I've had PVCs, palpitations and a fast heart rate, due to mitral valve prolapse (more of a problem when I was pregnant). Dehydration, caffeine and too much sugar are triggers for me. Hearts can be lots of trouble sometimes!
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Old 12-01-2012, 02:02 AM   #3
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I would agree that a wheelchair or ECV would be the way to go. Think of it this way, there's nothing saying you have to sit in it all day you know? If you get a traditional wheelchair just keep in mind you'll need people to push it (and I do mean people, not person because its more of a job that most people realize) and at times you could walk on your own and just push it along.
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Old 12-01-2012, 07:41 AM   #4
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I would go with an ECV and would rent from an outside source; so, you could have it at the resort. If you are on Disney property you can wait some for buses and such.

I would consider a break each day. You can rest at the first aid centers in each park if you don't want to return to your room. The nurses at the first aid center can test your blood pressure and I would do it more than once; so, you know if you are getting too low.

I think it might be advisable to stay away from long waits in lines like Toy Story Mania.
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Old 12-01-2012, 05:14 PM   #5
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Since it sounds like the distances aren't a problem, just the standing, another option would be to rent or buy a rollator. You could push the rollator while walking around, but it would still give you a spot to sit down when you needed in lines. You could do the same with a manual wheelchair (which has the benefit of someone being able to push you in it if you needed to sit rather than walk at any point).
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Old 12-02-2012, 01:46 PM   #6
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Agree with those stating no GAC but aid. The exact choice would be highly dependant on what symptoms you do and don't experience. If any history of -or risk- of blacking out and/or fainting an ECV would not be an option. Not safe with the combination of mentioned above symptoms and not an experienced driver and having a proper track record of knowing when an episode is coming up and being able to safely intervene before that and preventing possible accidents.

A rollator would also be out of the question with any risk of passing out as the seat would only provide seating for those pro-actively being able to keep their balance and not go limp while passing out. The two combined would then result in only one option; wheelchair. Simply use it as a walker and sit whenever there might be a need for it. Not familiar enough yet to know early enough when an episode is coming up to safely act upon it? Safety comes first. Sit your butt down, period. You will rather sit down for "nothing", than not sit down out of whatever sentiment and find yourself regretting not sitting down.

Learning to read your triggers will be a big thing. You know some, odds are you will not know all yet. The more you get to know them, the more power to have to deal pro-actively.

If not already being looked into, have you ever heard of something called pots? Name might be somewhat confusing with the tachycardia (high rate) in it, but brachycardia (low rate) can also be one of the symptoms one can experience from it. Could very well fit the symptoms you describe to a teeth, allthough obviously there are more possible culprits. Just reckoned I mentioned it, since still not all cardiologists are familiar with it unfortunately.


In case of wondering, above is not just common sense thinking but also years of experience. Got pots as part of a package deal of my syndrome, and pvc's and svt's as another part of the package deal. Both the pots and mostly the svt's results in (while very different in feel for me depending on the cause, very much the same in outcome like fainting etc.) episodes but no biggie at all while navigating. Knowing my triggers is a big factor combined with knowing when something is coming up and act pro-actively. I'm a powerchair user in daily life and because of that -and so familiar with the powerchair- I can prevent myself from getting into possible dangerous situation for me or anyone around. We're still tweaking my meds to try and get the svt episodes a bit more under controle, but mostly it's just one of those things you deal with. Know triggers, know what can help prevent and go on with it.
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Old 12-02-2012, 07:27 PM   #7
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Quote:
Originally Posted by goofieslonglostsis View Post
Agree with those stating no GAC but aid. The exact choice would be highly dependant on what symptoms you do and don't experience. If any history of -or risk- of blacking out and/or fainting an ECV would not be an option. Not safe with the combination of mentioned above symptoms and not an experienced driver and having a proper track record of knowing when an episode is coming up and being able to safely intervene before that and preventing possible accidents.

A rollator would also be out of the question with any risk of passing out as the seat would only provide seating for those pro-actively being able to keep their balance and not go limp while passing out. The two combined would then result in only one option; wheelchair. Simply use it as a walker and sit whenever there might be a need for it. Not familiar enough yet to know early enough when an episode is coming up to safely act upon it? Safety comes first. Sit your butt down, period. You will rather sit down for "nothing", than not sit down out of whatever sentiment and find yourself regretting not sitting down.

Learning to read your triggers will be a big thing. You know some, odds are you will not know all yet. The more you get to know them, the more power to have to deal pro-actively.

If not already being looked into, have you ever heard of something called pots? Name might be somewhat confusing with the tachycardia (high rate) in it, but brachycardia (low rate) can also be one of the symptoms one can experience from it. Could very well fit the symptoms you describe to a teeth, allthough obviously there are more possible culprits. Just reckoned I mentioned it, since still not all cardiologists are familiar with it unfortunately.


In case of wondering, above is not just common sense thinking but also years of experience. Got pots as part of a package deal of my syndrome, and pvc's and svt's as another part of the package deal. Both the pots and mostly the svt's results in (while very different in feel for me depending on the cause, very much the same in outcome like fainting etc.) episodes but no biggie at all while navigating. Knowing my triggers is a big factor combined with knowing when something is coming up and act pro-actively. I'm a powerchair user in daily life and because of that -and so familiar with the powerchair- I can prevent myself from getting into possible dangerous situation for me or anyone around. We're still tweaking my meds to try and get the svt episodes a bit more under controle, but mostly it's just one of those things you deal with. Know triggers, know what can help prevent and go on with it.
Thanks. Yeah i've been tested for POTS. came back negative.

We think part of it might possibly be something called Bezold-Jarisch reflex. It would at least explain the drops in my BP and heart rate at the same time.

The big issue is that we dont really know my triggers. We know that being dehydrated obviously excacerbates whatever is going on but otherwise, we have no idea why it happens. We think my gastroperisis and other GI problems might be contributing. Like today, I went to urgent care for something today and when they took my BP, it was 80/45. No idea why. They ran some labs and I should know more tomorrow but I have no other symptoms of being dehydrated or anything like that so we really have no idea.

I do already have Inappropriate sinus tachycardia with palpatations and PVCs.

I also have a host of other issues included some other undiagnosed problems so there is a lot complicating the situation.
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