Congenital Heart Defects and Murmurs

[tantekay]

I have a son that was diagnosed with a single ventricle, asd, vsd, transposition of great  arteries. (He's had a modified norwood, sk damus, and glenn,  waiting on fontan.) Along with this he has a history of svt's (on meds for this) and a murmur -- aortic insuffiency - decending. Otherwise he's a very active and thriving toddler.   At the last visit his murmur by stethoscope was a 1/6 and been that way for a while.  From what I've read this means minor.   He goes back for a yearly echo in a few months.  I was wondering if I'm  correct  -- a 1/6 is a minor and how bad can the murmur get before we have to worry about meds and possible valve surgery?  Also, if the murmur has not worsened since his birth, what are our chances of it getting worse now?

[CCF-M.D.-MJM]

Hello,

I sorry to hear about your sons congenital heart disease.  As you know, congenital single ventricle is very rare.  I have never seen a case of it and because my subspeciality is electrophysiogy, I seldom encounter congenital heart disease. Your question is very difficult to answer and I think you will be better off finding a super specialists -- meaning someone that specializes in congenital heart disease and deals with this all the time.

That being said, I want to caution you that murmurs are important physical findings that are sometimes difficult to translant into an exact science, especially in the days of echocardiography.  The intensity of a murmur is dependent on the pressure in two chambers involved, loading conditions, and the ears of the person listening.

This is a long winded way of me seeing that I don't feel comfortable answering your question directly -- although it is very important question.

I hope this helps a little and wish you and your family well.

[ArisEve]

Salutations.


On June 16th, of last year, I was in a car accident that put me into the hospital for 26 days.


I have been a user of hard drugs, cocaine, extacy, crystal meth, and pills up untill the accident.

My heart stopped on the scene.


I recovered, but was told to get further scans of my brain activity as well as blood work tests/ heart tests.


I am still a smoker( pack a day)


I am 69 and 1/2 inches tall and weight 140lbs(give or take 5lbs)
I wouldnt call myself skinny or in excellent shape because I have a bit of a belly.  

I do however, untill recently, run actively-  And am very active at work push my body much harder then normal and walk often.

I drink multiple energy drinks and take a multivitamin.  I do not eat meat.

Recently, I have been having chest pain that is centralized in the region of the heart.  It's dull and penetrating... It is always in one spot, feels like my heart.  

Could this be something extremely serious?  It comes and goes but it's been a daily thing for sometime now.  anywhere from 30 seconds to on/off hours.  Seems to happen at any time, or not anytime at all.  But will have 3~5 occurances any day that I am awake.

I have terrible circulation in my legs as well as they will "fall asleep" in almost any sitting position unless I am consistantly repositioning.  


I probably put myself under a decent amount of stress, and sleep on a wood floor with a bit of carpeting.  I dont usually get much sleep, and when I do I toss and turn.  I end up waking up due to the fact that either of one of my arms is completely numbed and/or burning with pain as I tend to fall into a deep sleep and ignore bothersomes such as putting your entire weight onto one side of the body.


Should I make an appointment to see a doctor?  Should I goto the hospital that treated me a year ago?  I owe them 1/2 a million dollars and I'm not too sure if they would allow me to schedule another appointment.  


Anyhelp would be appreciated because if I dont get moving on this I might never move again...


Thank you.

[Christie2004]

I'm getting chest pain just reading your story!

I would see a doctor.  Just the smoking aspect puts you at risk for heart and circulatory problems.  Whether you can go back to the same hospital or not, I don't know.  But you need to be seen somewhere by a cardiologist.

[EchoTech]

Well, I'm not a doctor, but it would seem that you are waiting for the third surgery to get to the Fontan.

[EchoTech]

Sorry, hit the post button instead of looking at the thread.  A 1/6 murmur is not bad, but keep in mind that he has a very complex condition.  His activity and symptoms or lack thereof would determine to a degree when he'll get the third stage. From what you've posted, I'll guess that his right heart is his main pumping chamber.  these valves will leak because they are not designed to withstand the systolic pressures of the left heart.  Valve surgery could be an unlikely option, but my guess is that it would be sometime down the road in a decade or two.  The problem he'll run into is the heart will eventually wear out if it is the right ventricle.  If it is the left ventricle, then those valves tend to be built a little more robustly.  The chances of it getting worse are probably get higher as he grows older, but that's a half educated guess, and I don't know all the facts of the case. I have personally seen two (maybe three) people make into their mid 30's before having significant problems that had heart operations like your son had or something close to it.

[PJmomrunner]

Your son certainly has a complicated anatomy that will no doubt cause you lots of worry.  I recommend you visit valvereplacement.com for support.  There are lots of caring people and other moms of children with congenital heart defects there--one in particular with a toddler daughter, whose anatomy is somewhat similar to your son's, who just went through a Fontan procedure in July.

All the best to you.

[tantekay]

Thanks for all the assistance.  I do appreciate it.  I've learned quite a bit about the heart since his diagnosis and still learning --  I've been told that I should become a nurse!!  Anyway, for anyone else reading, along with all the other info about my sons heart condtion, he does have the left ventricle -- part of the diagnosis was ventricular inversion.  He is due to have his Fontan -- plans are to have it done at age 3 unless they change their minds.  Thanks again!!!