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967168 tn?1477584489

Update

All things happen for a reason...keep chanting that! when I question doctors; tell me I said that lol.  I found THE most wonderful cardiologist and plan on keeping him until he gets rid of me or I die lol I was so anxious about the other dr's appt then the cancellation and I'm so glad now it did...it was for the best I was so impressed with him I can't even tell you.

He's referring me to Vanderbilt for my ANS issues, he says mine are severe enough only the top dr there can help me and he's sent a few patients there. Told me to lower my stress levels and agreed I needed to talk to a therapist about my health issues; I have a very tough complex case but he will be my care coordinator and get me as healthy as I can be.

He knew alot about ANS and heart issues and after talking to him for over an hour he thinks I may have ARVD; like my original cardiologist & EP did.  He's going to take my file and tests apart piece by piece and get with some world renown dr's and find out what's wrong...I was so relieved I started to freakin cry and embarrassed myself!

Plus, he got a rep from boston scientific there to see me, I don't have to have my leads for my PM/ICD replaced yay! I'm not pacemaker dependent and really only need it for my VT issues (which were alot) and some minor bradycardia's so it does it's job and I have 8.5 years left on my battery if I become pm dependent then yes my leads are too high.

OMG - he sees a patient with 80,000 PVC"S! he said he's been her dr for years and she has no symptoms - they were caught on a routine exam and she controls them with the right balance of meds...I'm still floored about this.

One thing plaguing me are my NSVT runs; ugh they almost doubled in amount from the last time I had my PM read on April 20, 2010. I only get a small printout but on average I'm having 15 episodes per month; and a few times almost to the shock thresholds, seems my hr's are getting increasing higher rates.

I'm having NSVT runs at 120's quite a bit and then at 160's and again in 190's awake and asleep...the awake ones don't bother me as much as the sleep ones do.  

Like this - only a portion of the higher levels - part didn't get printed out; has to be due to my sleep apnea (which i have to get treated)
Jan 9th 3:44am 190 NSVT;
Jan 10th 21:35 169 NSVT
Jan 16th 00:59; 1:01; 1:08 1:52 NSVT 160 - 164;
Jan 27th 22:50 178 NSVT
Jan 28th 5:18a 164 NSVT

I have to go back in a few weeks have an echo and another checkup to talk to him about what he finds, but if it is ARVD not alot more they can do since I have an ICD already - manage care.  We didn't even touch the heart failure and P wave issues; he wants to go over my echo & everything else before he makes a call on the HF.

Can it be, that I've finally found a set of great dr's with my primary included or am I in a dream and going to wake up to some of my old dr's laughing maniacally over me? :P
11 Responses
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967168 tn?1477584489
thank you =)

one less thing off my plate to worry about and one less stressor...now to those other 999,9999 :P
Helpful - 0
Avatar universal
Oh, Lisa...I'm so very happy for you!!!
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967168 tn?1477584489
It's not a shock with anything under 220 bpm - it gets "converted" by the ICD so it doesn't go into higher rates. it feels like someone grabs my heart and twists it counter clockwise to a lower rate...does that make sense?

The "lovely" helmets are for head protection because I have a tendency as I black out or faint and fall into walls and furniture...then onto the floor.  So if I have to exert myself and be active more times of the day - that will push my HR higher and I may faint or get shocked and I've hit my head so many times I've sustained injuries.
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Avatar universal
Wow. Very intersting. What is the helmet for? (sorry, I really dont know)--I am assuming the obvious--you may fall--but can you explain?
Thats really interesting your thing shocks without pain? I hear others have talk of terrible pain.
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967168 tn?1477584489
thank you all, it is such a relief to have the stress gone of knowing I would have my leads taken out as the other dr told me

hopefully soon I'll have some more answers...not that any of them will be easy to live with  luckily I do have an ICD, but there's still issues I'll face but I'll have A NAME...which is all I want.

With the Teligen 100, it senses high hr's and can tell the difference in regular tachycardia and VT runs that may turn into VF. Then it "paces" my heart back down to normal ranges, I can feel this most times, it doesn't hurt but is more of a twisting feeling...don't know how else to describe it...my notes show the times/dates I feel it are very accurate - there are some times I don't realize it too.

At 220 bpm I would be shocked w/41j, then it increases if it still senses the hr's.  I'm supposed to increase my activity levels in the next weeks to see how much I can push my heart...I've been sedentary, so none of these rates show exertion...It makes me anxious just thinking about exertion will cause a shock...oh they lovely helmet he's going to prescribe will do wonders for my self esteem and love life :P

this is what Boston Sci says; I'm so brain foggy today I can't explain the process better sorry - Quick Convert delivers a burst of ATP in the VF zone to avoid painful shocks for pace terminable VTs below 250 beats per minute, and is designed to provide back-up pacing for every beat.  If you go to the BS website - boston scientific *******, look under products it tells about all the different devices they have and what they do.

How long those NSVT runs last it doesn't show; I just get a report with times ranges etc and shows when it happens. I'll scan and post it in my profile soon to show you an example.

On top of those I listed while sleep, I had NSVT runs between 120 - 195 bpm on 2/2/11 8:22a; 1/31/11 8:11a; 1/27/11 7:11a; 1/24/11 6:35a; 1/19/11 7:35a; 1/14/11 12:46p; 1/11/11 7:04a; 1/9/11 11:11a.

When I go back in 3 weeks, we'll discuss another monitor; but I'm hesitant to go on any BB because of the side effects I've had except on Inderal.
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450439 tn?1249233238
YAY!! I'm so happy for you Lisa!!! Congrats!!!
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1182699 tn?1297574784
Congratulations Lisa! I am so happy you found the right one! They are out there, we just have to find them. You're going to be as good as new!
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1347434 tn?1282591778
Those are rates your posting? How long are those runs lasting for?
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Avatar universal
NSVT--non sustained ventricular tachy? Isnt that what your ICD is for? Does that mean you are shocked every other day?
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967168 tn?1477584489
thank you =)

I'm just wondering what so many NSVT runs at those lvls will cause? have to research that one
NSVT runs every other day on average; I don't think I had that many before but I'm going to look at my test results.
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Avatar universal
Lisa. I am really happy to hear you found a great doctor. I hope they get this all figured out, it sounds like they will. Congratulations. :)
Helpful - 0
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