Ventricular Fibrilation and Long QT

[every1sangel]

Hello there, i am a 20 year old female (will be 21 in a week :) ).

Exactly a month ago, i had an episode of ventricular fibrilation while in the hospital. I was in the hospital for passing a kidney stone...they gave me some meds, including one i am allergic to (Fentenayl). Also i was give antropine, zofran, and benydryl. I guess they said i started "seizing" and went into cardiac arrest. 10 days later once out of ICU i was told i have Long QT syndrome. There are many arguments into what caused it as well as i had one doctor insist they take me into surgery right away to have and ICD place. Also they argue i had a predisposition to it (genetics) or it was one of the many drugs they gave me.

I have been to several EPs including one at Stanford and have been told i am "borderline" and a decision to get an implanted ICD would be up to me. However, i am waiting for genetic tests to see if i had a predisposition to this. I had an echo and it was normal, i had a cath exam and it was normal, i had a brain wave test, which was normal. So one doctor told me i "convulsed" not "seized"

My questions are, if my genetic test comes back normal, can the acquired Long QT go away?? Also, i am on Propranolol 20 mg 2x a day, and it drops my blood pressure to 62/59...my doctors are scared to take me off of the beta blocker, but having fainting spells and being scared to be alone is getting to me and i am even wearing a life vest (external defibrillator) What should i do?? Would i benefit from and EP Study?? Could ablation be an option?? And should i go to the ER for such a low heart rate, headache, and chest pain?

Thank you!

[stevie_wonder]

Hi,
First off, I'm so sorry this is happening to you right now. But, with your history of fainting, and the VF episode after taking QT prolonging drugs you could very well have a genetic disposition to Long QT Syndrome.

The problem with LQTS is that sometimes there is no concrete evidence that can diagnose it. Even genetic testing only finds mutations in around 75% of the cases. Some people with the genetic form of LQTS have normal QT intervals at most times and then at certain situation of stress, hormone changes such as menstruation and post-partum after having a baby, electrolyte imbalances, illness or medications can cause their QT interval to suddenly lengthen leading to Torsades VT or even, as in your case, VF.

LQTS is not very often black and white and most doctors are not capable of diagnosing it. You need to seek out an experienced LQTS EP by contacting SADS www.sads.org or CARE www.longqt.org. Both sites have valuable info and people you can contact to help find a doctor in your area of the US. I saw several different cardiologists who said I was fine until I contacted SADS and found an EP who knew LQTS.

If you do have genetic LQTS an ICD is almost always indicated in the case of VF. While LQTS is highly treatable, if left untreated, the consequences can be deadly. Please continue to find info and educate yourself and don't stop looking into this until you are 100% certain of the diagnosis.

Good luck and PM me if you have any questions. I have LQTS and an ICD and I would be happy to answer anything that comes to your mind.

[every1sangel]

Hi Lisa,

I have fainted in the past, that is why i had my heart checked out a few years back. Once i hit puberty, i started to faint every once in a while (mainly while i menstruating) and they found i have a bleeding disorder (von Willliebrands). My blood pressure has always been on the lower side, but still about 105/70.

I have had a tilt table test and nothing came of it.

I am having my blood drawn for the genetics test next week. I just say my cardiologist, he lowered my beta blocker dose and i already feel better. He believes i do NOT have long QT and the reason i had long QT intervals while in the hospital was because i was on so many drugs (i was in an induced coma, and enough drugs were in me to sedate my entire family (5 people). He told me that if it was him in that situation, his QT interval would have been elongated as well.

[Mom2four85]

I can't read your whole post correct right now, but I will later.  One thing that jumped out at me is this - "Also they argue i had a predisposition to it (genetics) or it was one of the many drugs they gave me"

How could they know you had a predisposition to it - [genetics] without doing the genetic tests until after you were out of the hospital? "However, i am waiting for genetic tests to see if i had a predisposition to this."

You have a really tough decision to make and need an accurate dx from a doctor you feel you can trust.  You may be able to make a decision easier if you had concrete proof you do have the genetics for LQTS.

I was in a similar situation as you are back in August, I'm alot older though :P I had an ablation during the ablation vfib'd 3 times. They gave me the choice - implant pm/icd or live knowing my heart may stop again at any time. My decision was a bit easier because I had a tilt test earlier that day that showed my heart stopped when I fainted.

My genetic testing for ARVD pointed to that being the cause, but was inconclusive they said either way I needed one put in.  2 subsequent cardiologists have said no it doesn't look like ARVD. It gives me peace of mind that it saves my life and keeps my heart doing what it's supposed to do and will alert them if anything goes on [live monitoring].

Did you faint and low HR/BP before all of this?  why did you have your heart checked out 2 years ago? Were you having any symptoms? Have you had a tilt table test?

I know it's scary and I'm sorry to pry but parents and family, friends can be a very vital part of your decision and recovery if you do have surgery.  I know I would tell my daughter [she's 23] we need to research this and find out the answers to the genetics part and then make a decision.

Getting a pm/icd isnt a light decision and hopefully you will make the right one for you.  Every 5-7 years you have to have the icd removed and a new one replaced, but normally the leads stay in place unless there's a problem with them.

I'm a member of an icd support group http://www.icdsupportgroup.org/board/ you can always join and ask the question there also - there's people from every age group and we each have differrent reasons we got our pm/icd's implanted so maybe someone will have more input for you.

[every1sangel]

Hello Cindy,

Thank you for the comment.  

To answer your first question, i actually live in Northern Nevada, but Stanford was only a 3 hour drive. Next, i did NOT go into the ER with a previous heart problem. I have had my heart completely checked out about 2 years ago (i have a loud valve), but NOTHING else. I had a tilt table 2 years ago, echos, and a holter monitor for 30 days and everything was fine. And actually they gave me the zofran and fentenayl at the same time (a cocktail) and the atropine right after....then the benadryl. No one knows why i received the atropine?? And they believe the atropine caused my lungs to fill with 4 liters of fluid which the wonderful nurses in care flight did on my way to a real hospital. The fentenayl, they knew i am allergic to that type of medication (morphine, dialouted, ect.)

The doctor that wanted to do the ICD immediately was not the doctor that caused everything, but my family believes he was trying to "hide" what had happened, and make it a MY fault deal.

I really appreciate your words of life and wisdom! At this point, if i do have a heart problem, i just want to know so i can LIVE...that is all i want, if i now have hurdles, i will jump them and go on.

Thank you again and i will look into those doctors you gave me and see if my insurance will allow me to go!

[cindy707]

You mentioned Stanford are you in Northern California? If so i have a great referral for you and he is one of the top docs in the world today......post and let me know.....i too am sorry about what you went thru and am a little surprised at the meds they gave you and for some reason something is just not fitting here.  So you went to the hospital for kidney stones,,,,owww i know that hurts gave you a med i am sure you told them you were allergic to and attempted obviously successfully at reversing the reaction thru the benedryl, gave you the fentnayl for pain which is super heavy duty the zofran for nausea probably because the fentnayl was making you nauseous and when your heart started acting up gave you the antropine for some reason that increased the firing of your SA node....nope doesn't make sense to me.  This is my feeling ...to have an ICD implanted at such a young age is a little scary to me because it is no easy feat....hopefully it is not the same docs that threw your body into this in the first place.  Time for a second opinion i seriously think.....and now you have to wear a life vest?  My question is did you have any of these problems with your heart before you went into the E,R,?  The low heart rate is coming from the beta blockers you are now on and why aren't they decreasing your dose if you are having problems with fainting?  Personally i feel that this doesn't ring right and is a little extreme going from A to Z here in under 60 seconds unless you have some underlying illess we are not aware of.  My feeling is this ....if you went into that hospital w. no heart problem and came out with one that is problem number one.....as far as getting the EP studies and mapping done take care of you here...don't be running around from doctor to lab to hospital to cardiologist...do a one stop shop here and find one doctor that does all of the above...a doc that diagnosis, that does surgery, that does EP mapping that does ablations.  Why would you possibly put yourself into a situation where days and weeks will roll on and on and on and you will be running a maze like a mouse?  You need to especially do your homework here...make sure whomever you hook up with that does and mapping and ablation has done well over a thousand of them in their career and then ask them how many losses they have...ask them in they know Dr. Natale and Scheinman the developers of the procedure...if they don;t time to say buh bye quickly.  If you are in Northern California my doc was one of the proteges of those two docs and they are the top dogs in the world and teach everywhere and are amazing.  I understand that Dr. Mel Scheinman practices in California somewhere so it is worth a shot...if not try my doc Dr. Steven Hao out of Greenbrae or Marin County here in Northern California if this is where you are from.  You cannot take chances with this situation...you need a single doc that does it all and has a great record and i was an extremely difficult case and Dr Hao breezed it because of his training he knows how to color outside of the lines so to speak...he literally saved my life......do your homework my friend...you only have one life and you don't want to spend it at 20 disabled because of a heart problem that may be fixable...good luck and please let us know.......

[Jerry_NJ]

I can't answer your questions, but I answer to say how sorry I am to read of your suffering and my deep hope that you will find the best answers, even a fix.

Perhaps if you get an ICD you will be able to get off of the beta blockers and get you BP up to a more livable range.

There is much experience on the Community, I hope you'll get some good suggestions and experience information.  In the end it is you and your doctor(s) who are in the position to make decisions.