Newly DX Cardiomyopathy

[ziggygirl]

Hi. My daughters heart rate mid Feb 2008 at night was 40 and irregular BP 120/70 repeated with no change. She is 18 yo. If we were not awake together due to a new puppy this would have been missed till she truly became symptomatic or worse... Anyway went to ER.  HR was anywhere from 40-150 with many PACs.  She has h/o SOB during sports for at least 2 years and was thought to have exercise induced asthma. Looking at her you would not think she was in respiratory distress.  PFTs were all normal.  No one thought that SOB might be cardiac related.  She has always done sports.  Lungs are clear BL during episodes of SOB, no pedal edema, no CP, no JVD. able to sleep flat. DC'd from ER with follow-up with cardiologist.  She had an echo which showed mild diffuse left ventricular hypokinesis, left ventricular EF mildly decreased (no% given?), mitral insuff is absent, RA and RV are nl in size, no pericardial effusion, trace regurg of tricuspid and mild regurg of pulmonic valve, no murmurs auscultated that I have been told.  Halter monitor showed rate from 40-154, no ventricular ectopy, 10 episodes of 3 or 4 sec pauses, sinus arrthymia.  Cardiopulmonary stress test showed VO2Max 31.  Awaiting second echo results and final report on cardiopulmonary stress test. Since she is still being worked up and in NAD-asymptomatic no one has started her on meds or has suggested she needs meds at this point.  I understand there is aprox 1/3 chance of this reversing on its own. I started her on CoQ10-100mg and L-Carnitine-500mg.  I feel there is nothing to lose to start this now while we continue with work-up.  Her work-up is now in the hands of a heart failure specialist at Columbia Presbyterean in NY. Are second opinions needed or is there a protocol that is followed and if so what physician/treatment center in the country has the most success with management for cardiomyopathy? Since she describes sxs I assume she is NYHA stage II?  Will she be put on meds based on what info I have given?  Thanks

[ziggygirl]

Thanks for answering.  The second echo one month later has EF of 50%. I know that there is a +/- 5% range that is dependent on who is looking at the results and some docs say normal is 55-75. Not treatable at 50%...as a nurse I can see she is not in failure but still not an EF you would expect for an active teen.  She is now getting cardionet wireless telemetry since she does have a tachy sinus dysrhtymia and doesn't feel it and reports that its "hard to breathe". This will be done for a month and whats nice is someone is watching hr live 24/7. Her heart rate on halter showed rate up to 155 and lots of PACs.  We will see what these tests show.  These arrthymias can cause mild cardiomyopathy.  Her thyroid and other labs are good. xcept slight anemia so I got her a good multivit.  IDK if there can be other issues leading to the abnormal/borderline results she has like sleep apnea or pulmonary hypertension? There has to be a reason for feeling breathless even at times when talking on the cell.

[ddavey]

i would not have known that my daughter had cardiomyopathy had she had not gone to see a nurse at school for a little bit of a cold...  her pulse was very low... went for a routine visit with her pediatric cardiologist a week or so later (she was 19 at the time and was born with an anureysmal bulge at mitral-aortic junction)  echo showed ef of 32% and she was admitted to hosp that day for management over the weekend.    after 18 months of meds and no improvement we went for second opinion at university of michigan   these drs believed that there is a possiblity that amber has arrythmia induced cardiomyopathy, started her on digoxin and tried an ablation (which was unsuccessful due to mass at the junction)  holter at this point shows over 27,000 pacs but amount of svt's is down to 166 from previous 749    since adding digoxin to the regimen of coreg, vasotec and inspra her ef is up to 42% and her bnp level is 18, and she is not currently in heart failure.  she is now 23 and doing much better.  i am wondering what your daughter's ef is ...  if it was under 40-50 i would think they would have started her on meds,    i certainly will be thinking of you and your daughter, as i know what you are going through.   please let us know how she is doing         dawn