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Old 11-11-2009, 01:26 PM   #1
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karel HB User
I need some answers

I have a 17 year old daughter that was just recently diagnosed with cardiomyopathy most likely caused by a virus. An accelerated heart rate was found by her PCP during a routine physical. The PCP immediately made her an appointment to see a pediatric cardiologist. He ordered every test imaginable for my daughter, all of which were normal, except the ECHO. Her heart is not constricting properly to pump the blood out of her heart. He scheduled her for a stress test and she was only able to stay on the treadmill 4 minutes before her heart rate went up. He is sending her to Atlanta for a cardiac MRI and we are presently waiting on the hospital to call to schedule that. He mentioned a heart cath to do a heart biopsy, but I get the impression he does not want to do that unless it is absolutely necessary. I guess that will depend upon what the MRI shows. He did tell us that her heart was not enlarged which was a good thing.

I had never heard of anyone her age having heart failure. I, as well as her father, were totally shocked. The cardiologist told us this condition is extremely rare for someone her age. He has started her on a very low dose of linsinopril (which he plans to increase slowly) and will later add a beta blocker to her daily regimen. I do not know the extent of her heart damage nor the degree her heart is functioning. I do not know what I should ask when we meet with the doctor. I am also so afraid to hear what his answers will be. It is such a frightening thing to go through for my daughter as well as us as her parents.

My daughter has always been very healthy. She's thin, exercises regularly and eats well. She danced, cheered and played sports. I do not understand why a virus would attack her heart. The doctor told us it's the same type virus that would cause a common cold in most people. For some unknown reason, her body is predisposed to the virus.

The cardiologist that my daughter sees has very high credentials and is highly recommended. My cousin's daughter was born with heart & kidney problems and the doctors she saw at Emory in Atlanta told her that this cardiologist is one of if not the best pediatric cardiologist in the county, so I feel she is in good hands.

I just want to know that my daughter will be okay and will live a normal life albeit with medications and restrictions. If she does have some restrictions, what type of restrictions can we expect? Can she increase her exercise level over time? Will she ever be able to have children? The cardiologist indicated that in some cases the heart can heal itself. What determines that? Will the medications improve her energy level, her ability to exercise?

I know these are all questions for her cardiologist and I do intend to ask them. It's just at the first visits, I guess her dad and I were so shocked and upset, that we couldn't think of what to ask and can't remember half of what he told us. I feel like such an idiot. We are simply worried sick about her and I guess I just want some assurance that she will be okay.

 
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Old 11-12-2009, 12:56 AM   #2
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Re: I need some answers

[QUOTE]
Quote:
Originally Posted by karel View Post
I have a 17 year old daughter that was just recently diagnosed with cardiomyopathy most likely caused by a virus.
How confident are you about their diagnosis. Did they say that they were 100% positive that your daughter has cardiomyopathy?

Quote:
An accelerated heart rate was found by her PCP during a routine physical.
Had your daughter ever complained about a rapid heartbeat?

Quote:
He ordered every test imaginable for my daughter, all of which were normal, except the ECHO. Her heart is not constricting properly to pump the blood out of her heart.
The heart was not able to pump sufficiently at that time, during the test, probably do to a rapid, poorly performing heart. Since the efficiency and pumping ability of the heart can change depending upon how well the heart is functioning at any one time, perhaps other tests might be run to confirm the diagnosis.

An Echo is subjective, and is open to the interpretation of the technician, and is prone to mis-diagnosis.

Quote:
He scheduled her for a stress test and she was only able to stay on the treadmill 4 minutes before her heart rate went up.
Did she stop at four minutes because she was fatigued and physically not able to continue?

Granted, when the heart is not beating at full capacity, for whatever reason, it limits physical capabilities, but when the heartbeat has settled down, through mediation and avoiding the triggers of rapid heartbeat, the person usually returns to full physical capabilities.

Quote:
He is sending her to Atlanta for a cardiac MRI and we are presently waiting on the hospital to call to schedule that.
I hope that this is not just another example of a doctor "milking" an insurance company.

Quote:
He mentioned a heart cath to do a heart biopsy, but I get the impression he does not want to do that unless it is absolutely necessary. I guess that will depend upon what the MRI shows. He did tell us that her heart was not enlarged which was a good thing.
I guess, since the heart is not enlarged, that he is saying that the heart muscle has thickened in places, and they want to check out the thickness of the heart muscle.

I have no medical training, or education, but in my opinion, if the heart is not enlarged, but just thickened, the heart can be restored to a fully healthy heart through the correct, most effective medication, diet, exercise and avoiding the triggers of rapid heartbeat.

I would question each evaluation ten times over and double check each finding.

Did you get a copy of the echo summary report? It shows the estimated measurements and thickness of the ventricles, atrials, septum, main arteries and valves.
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Old 12-13-2009, 08:17 PM   #3
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Re: I need some answers

Hi Karel,

I am pretty much in the same ship as your daughter. I'm 36 though but should also not be at the age where i have this problem.

My problem was also discovered in a routine physical ECG. Where PVCs were found during treadmill.

I went to a second opinion 2 weeks later and they found my heart function normal. 50-55%. (From 30%).

The doctor also suggests a cardiac MRI and that's january scheduled for me. He thinks the likely cause is viral infection, but biopsy is not suggested for my case because my blood tests do not show an active viral infection (it was a guess). So I think if the blood tests like CKMB and Troponin comes back normal, a biopsy is probably unnecessary risk because so what if you know what is the virus type, the infection is already gone. And biopsy has risks.

My cath came back normal, and I guess at 17, your daughter's probably will be ok as well. The problem is, what is the problem. The doctors have thrown the diagnosis of idiopathic non-ischemic cardiomyopathy which is a fancy name for "we don't know".

The bottomline I think is that first, the diagnosis is not that bad and you can either live very well (Re:Machoan) with the right balance and sensible lifestyle. Second, it may not be permanent, like my second tests shows much improvements (healing service helps- i think it is God's message for me to go back to HIM). Especially since if it is not due to coronary artery problems, I think the chances of recovery is higher.

edwindad

 
Old 12-14-2009, 06:19 AM   #4
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Re: I need some answers

Thank you Edwindad for your response. She had the cardiac MRI last week. The radiologist told us on his preliminary review of the pictures that he did not see any heart damage and her heart appeared to be functioning within normal ranges. However, when they attempted to do the stress part of the test, they had to call it off. When the med used to accelerate her heart rate was started, her heart rate went to 180 in less than 2 seconds so they could not do that part of the test. When we first got the diagnosis, the cardiologist told us she definitely had heart damage, but the radiologist says he did not see any damage. Does this mean that her heart has healed itself? We are waiting for the radiologist to fax his report to the cardiologist. I hope that we will have answers to our questions once we are able to discuss things with the cardiologist. My daughter definitely has a problem, her heart rate goes way too high with very little exertion. I want them to find out what is wrong and fix it

 
Old 12-16-2009, 12:42 AM   #5
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Re: I need some answers

Hi Karel,

I think the cardio when he did the echo scan for your daughter, he probably saw that the Ejection Fraction was less than 50%. Mine was 30%. But i doubt you can really see the damage extent from ultrasound. The MRI gives, as I understand, a much sharper image. And it can tell if there is "scarring" which means that there is permanent damage probably due to lack of oxygen long term like in heart attack.

The MRI result I think if shows no damage means that the heart muscle tissues are 'sleeping' or hibernating. In this instance, there is a chance to reactivate them and reverse the efficiency of the heart to normal level. So I think based on the tests so far, the reversibility probability of the heart function is pretty good.

I really think we are like in the same situation, good exercise capacity, no symptoms, but test results seem to suggest otherwise.

By the way, is your daughter's ECG normal? What is her LVEF %? There's a forum thread which recommends that Apple cider vinegar can get rid of irregular heart rythms, worth trying.

What is the next step for your daughter?

 
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