ARVD

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natashal
Posts: 65
Joined: April 27th, 2014, 9:44 am

ARVD

Post by natashal » April 27th, 2014, 1:30 pm

Anyone else have Arrythmogenic Right Ventricle Dysplasia? I am lying here post ICD implant looking forward to being discharged, but scared. I was diagnosed a week ago, hard to wrap my head around it all..,

I am 39 and a very athletic female. I know I won't be able to exercise like I used to. My doc says I can walk now and hopefully get back into jogging. I am reading that exercise progresses the disease. Anyone else have this and what are you doing now? How are you doing now?8

Thanks for the info and support.

Natasha

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xislandman2004
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Location: Homosassa, Florida

Re: ARVD

Post by xislandman2004 » April 27th, 2014, 4:28 pm

I have little knowledge of this condition. I am sorry to hear that exercise is not suggested. I would look into that farther...
--dennis

Hypertrophic Cardiomyopathy - Heart failure
First ICD Medtronic 5/16/08
Pulmonary Vein Ablation 9/1/10
Second ICD Medtronic 5/8/12
AV Node ablation 12/23/13
Medtronic Viva CRT-D 4/14/14
Mitral valve replacement 7/14/15
plural and pericardia fluids (2.5 liters) drained 2/16


Coreg 12.5mg x 3


Coumadin 4.0 mg qd
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Then the lie passed into history and became truth. - George Orwell 1984

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freckles1880
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Re: ARVD

Post by freckles1880 » April 27th, 2014, 5:11 pm

xislandman2004 wrote:I have little knowledge of this condition. I am sorry to hear that exercise is not suggested. I would look into that farther...
howdywelcome :armdown: Welcome to our group. First of all I thought I would let others know what you have. "What Is Arrhythmogenic Right Ventricular Dysplasia (ARVD)(also called arrhythmogenic right ventricular cardiomyopathy) ?

ARVD is a rare form of cardiomyopathy in which the heart muscle of the right ventricle (RV) is replaced by fat and/or fibrous tissue. The right ventricle is dilated and contracts poorly. As a result, the ability of the heart to pump blood is usually weakened. Patients with ARVD often have arrhythmias (abnormal heart rhythms), which can increase the risk of sudden cardiac arrest or death. "
Now; We have so many folks on here with many different conditions. Yes there are restrictions depending on you condition, but we have many who are very active in the same sports they did before the implant, so I would first heal and take some cardiac rehab, then see what the doctors will let you do. It may not be as intensive as you were used to but you may find you can work your way back into some of your activities.

wavhi
Bob

Medtronic-Visia AF implanted 7-8-2016 stayed with the with 6947 Sprint Quattro Secure lead. Original ICD implant 2-4-2009. ICD turned off 10-6-17 as stage 4 lung cancer taking over.
Major heart attack, carcinogenic shock and quad bypass 10-13-08 post myocardial infarction, old inferior MI complicated by shock and CHF, combined, Atherosclerosis, abdominal aortic Aneurysm, Seroma 7 cm, left leg. Stent in the left main vein 10-7-2014

My "Wardens" are my bride of 54+ years and my daughters.

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Suzanne
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Location: Toronto, Ontario, Canada

Re: ARVD

Post by Suzanne » April 28th, 2014, 8:54 am

natashal wrote:Anyone else have Arrythmogenic Right Ventricle Dysplasia? I am lying here post ICD implant looking forward to being discharged, but scared. I was diagnosed a week ago, hard to wrap my head around it all..,

I am 39 and a very athletic female. I know I won't be able to exercise like I used to. My doc says I can walk now and hopefully get back into jogging. I am reading that exercise progresses the disease. Anyone else have this and what are you doing now? How are you doing now?8

Thanks for the info and support.

Natasha
Hi Natasha and welcome :D

I was originally diagnosed with probable ARVD. After a second opinion, more tests and procedures, it was determined that I did not have ARVD. I believe that there are too many people out there that have been incorrectly diagnosed with ARVD. My EP recently told me that he's seen several members of a family whom have ICDs because they had been diagnosed with ARVD. After numerous tests, etc., he's determined that they do not have ARVD and they will be having their ICDs explanted.

ARVD is not so easy to diagnose. http://www.hopkinsmedicine.org/heart_va ... index.html

I'm just saying all this because I want you to be informed. Get a second opinion even. I wish you all the best!
~ Suzanne ~

St Jude ICD and Lead Implanted Feb.20/09
8 Shock Storm March 21/09
Lead Dislodged, so Replaced with Medtronic Lead June 16/09
ICD and Lead Explanted Nov.23/09
Medtronic Reveal XT (Cardiac Monitor) Implanted Jan.25/10...explanted and new one reinserted on July 21/11

Cardiac Monitor explanted Sept.9/14

garya
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Re: ARVD

Post by garya » April 28th, 2014, 10:26 am

I agree with Suzanne. Second opinion and not from some local cardiology practice down the street. I would search out some big time, big name cardiologists. Like at Cleveland Clinic, Mayo Clinic, John Hopkins.

(does anyone now see the benefit of including at least a rough geographical reference for where they reside)

natashal
Posts: 65
Joined: April 27th, 2014, 9:44 am

Re: ARVD

Post by natashal » April 28th, 2014, 12:32 pm

I actually was diagnosed through the Cardiac MRI. The cardiologists at Catholic Medical Center are superb and known for being so. They sent me to Boston for it. It is definitely not the mom and pop shop.

natashal
Posts: 65
Joined: April 27th, 2014, 9:44 am

Re: ARVD

Post by natashal » August 18th, 2015, 3:28 pm

Update: I got a 2nd opinion and 3rd opinion by top docs and do not have ARVD. This was done in May 2014. After all sorts of tests, I have idiopathic VT. Just wanted to post an update.

I have been doing great, running alot, wear HRM. Keep HR under 140, take Sotalol 40 mg. But had my first event Saturday running. Out of the blue. I was paced out of it. I actually thought it was only a PVC. Feel great otherwise, just mentally it is a bit of a confidence crusher. Going back to no caffeine no alcohol as I have been drinking alot more lately.

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