Posts from Jan. 1, 2009 to Dec 31, 2009

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Joined: November 14th, 2005, 4:24 pm
Location: Warwickshire, UK


Post by *karenb* » July 5th, 2009, 2:17 am

Hi Nancy & Theresa,

I haven't found an alternative to chocolate - so I still have the occasional piece, as well as a glass of wine once or twice a week. It keeps me happy!!

First ICD 2004.
Current ICD implanted 09/06

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Joined: June 10th, 2009, 5:40 pm


Post by kellie » July 25th, 2009, 4:34 pm

Hi Everyone
It has been a while since I have checked the forum as I know it may sound crazy but I am trying not to think about it all and enjoy life. But I woke up this morning needing to touch base. The elite 3 grows to 4 (hopefully more cpvters will find us). I wish you well Nancy. I am sooo impress running a marthon. Thanks for the info on adrenaline Theresa, I did not know about warm ups and cool downs. And thanks for Karens and Theresa for you personal information about your ICD and medication. It helps just to know we are all different so you don't feel strange about it taking so long to get the balance of it all right. All has been well on the home front apart from a nasty flu.
Hoping everyone is well.



Post by Theresa » July 26th, 2009, 10:38 am

Hi Kellie
It's great to hear from you. I'm also glad that you are pacing yourself. Did you know that epinephrine is a form of adrenaline and is found in over-the counter medications for colds etc. It is als found in dental freezing (they can give you something else). These can all be deadly for us.
Take care of yurself.

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Joined: April 28th, 2015, 5:25 pm


Post by norma.gonzalez94 » April 28th, 2015, 6:18 pm

i have cpvt for 13 years and now am pregnant wondering if my little girl have a chance of getting cpvt and what my chance of giving birt normal or c section am due on august the 20th.

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Post by freckles1880 » April 28th, 2015, 6:29 pm

This is a post from another site from one of our members: It appears that there are genetic tests but at least back then they were not real reliable. I hope this helps.

[Quote} • June 22, 2008 at 1:51 pm
I was diagnosed with CPVT at the age of 37 - six years ago. It is, I am sure you are discovering, a very rare condition, or at least survivors are very rare. It is a great thing that your daughter has been diagnosed so young - the majority of people with CPVT don't live out of their teens because they have not been diagnosed and treated.
I am cared for in the UK by a professor in cardiac electrophysiology and the following is what I have been told by him.
Initially the treatment is betablockers, and if these are tolerated then further treatment may not be needed - other than lifelong betablockers and monitoring. The downside to these drugs is fatigue, which can be unpredictable (i.e. not related to activity) and low blood pressure which can result in fainting. The usual advice is to eat regularly, drink plenty of fluids and rest when necessary.
If betablockers are not successful then an ICD (implantable cardiac defibrillator) may be offered. This is the safest option as it means that any potentially fatal arrythmia will be dealt with by the ICD and sudden death due to CPVT is highly unlikely. However, ICDs can be difficult to cope with as they are sometimes 'unpredictable', require replacement regularly and can mean limitations in activity. There are also psychological consequences of having an ICD as well as having a sudden death syndrome.
I have an ICD as betablockers dropped my heart rate too low. Its taken a while for me to adjust, but maybe children adjust more quickly.
The other advice that I have been given is to avoid swimming (its a very high risk activity for CPVT), avoid extremes of exercise or stress(no competitive athletics, cycling, mountain climbing, etc), no alcohol, no chocolate and no caffeine. I would imagine the chocolate thing could be tough for a child, but as I have an ICD I do sometimes have a piece even though it triggers some arrythmia - as does fatigue, exercise or stress (arguments, upsets etc).
You may also find the following forum useful as there are a number of parents with children with similar conditions who regularly post. http://www.icdsupportgroup.org/board/
Hope this helps and best wishes
Karen [End Quote]


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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