New Cardiomyopathy Diagnosis

[hohoho6]

I'm a 44 year old female. I am healthy and recently had a good cholesterol test and low/average blood pressure.  I have a family hx of CAD and my mom has a pacemaker for Sick Sinus. Two weeks ago I had a stress echo (following an abnormal routine EKG) and was told that my heart was weak and I should be concerned. I have a 20 year old dx of MVP. I was told my MVP was very mild and the cardiomyopathy might be from a virus. Before the echo I had had some breathlessness and palpitations but I'd chalked it up to the old MVP and stress.  I've had many blood tests and the cardiologist has ruled out treatable causes. I"m taking Coreg 12mg/day. I've lost 8 pounds (I'm 5'5" 125) I have an appt in 10 days and I have no idea what I should ask/be concerned about. He said I should bring someone with me and talked about possibly sending me for a second opinion (for what?). Please help me know what information I should be asking, or what other tests the md should consider.

[meloyler1]

I am a 42 year old female, cholesterol under 200, low to average blood pressure, very good health, exercise 3-4 times a week, and ate low fat/no fat religiously, UNTIL about 3 years ago, when I sudddenly began feeling incredibly tired all of the time, had trouble breathing, w.fevers, and I think it stems originally from a nearly 3 mo stint with the flu, that, and alot of stress at the time.....

My issue is now that I am completely uninsurable - even though I have been "normal" for 2 1/2 years after being on an incredibly expensive antibiotic, 'Valcyte", for 5 months - normal EF, normal Echos, Normal Stress Tests, and a Normal Cath - no one will "touch" me, which has been incredibly frustrating, to say the least!

Does anyone else have this issue at all?  And though I am not coverable, no one will tell me the "bottom line" reason as to why this is the case, considering I was never ill before (other than colds, and the typical flu), and am only 42 years old?  I understand I am not insurable, but I wanted to better understand "Why"?  Is it because cardiomyopathy occured, regardless whether there was no scarring, etc., or other permanent issues?  Or, because anymore, anything concerning the "heart" overall is a bit no-no to cover?

Can anyone shed any light on this matter?  Very discouraged, and from all of my research, there is no real "terminology" for this other than "viral transient cardiomyopathy" - No reason to think it will come back, (if ever), or is there?  Maybe that is why - the unknown?  Thank you everyone!  I would love to better understand this issue.

[hohoho6]

Sorry for the delay in post. I hope that you all are well. I just visited again with the local cardiologist. A few weeks ago I had a stress MRI and now my EF is 50. They can't account for the rapid improvement but we're very thankful. They say my CM is transient and resolving. Still they're raising my beta blocker and lisinopril to the max doses because even on the beta I'm having 10,000+ PVCs per day. I'm really not that concerned about them since the MD assures me they're harmless, but they are annoying. Local cardio says that the electrophysiologists don't worry about the PVCs till you get over 20,000 REALLY? I wish I knew how many I was having before being on the beta for a month. Isn't the beta blocker supposed to reduce them? The local cardiologist will repeat the Holter and echo in 6 months. I was told up at Mayo I'll probably take the meds for life but local cardio. said I may be able to wean off. I'd love to hear from anyone with similar symptoms/ I've read a lot of the PVC threads but few mention how many they're having. Do people take beta blockers for PVCs even after their EF returns to normal?  I'm also having my children screened as they believe some of this may be due to a genetic predisposition.

[ddavey]

have you noticed if you have been easily fatigued for a period of time??    originally they said that amber's cm could have been viral and I spent a long period of time trying to figure out how that could be as she really hadn't been sick... i even thought she may have contracted a virus from a laparotomy she had done for ovarian tumors two years before...   knowing what I know now the first thing I would ask would be what did the holter report show,  with the underlying history of mvp I would wonder if there is a significant amount of arrythymia (pac's which is premature atrial contraction or pvc's which is premature ventricular contraction)   I know that connie (momto3) had pvc induced cardiomyopathy and in my daughter's case we now know that her cm is pac induced.   after amber was diagnosed I racked my brain trying to figure out what I missed to not see that she had a problem and the only thing that stood out is that she was always tired..  but she was 18-19 yrs old and I just figured it was the age...  please keep us updated and we wish you the best.    dawn

[hohoho6]

We returnted to the local cardiologist and I found my EF is only 25. He started me on an ACE inhibitor and doubled my beta blocker. I wore a Holter monitor Tue/Wed and he referred me to the Mayo Clinic this Mon. Now I'm worried. This seemed to have come on suddenly but I haven't been sick. If the CM is viral how long ago would I have had the virus? I don't know the results from the monitor but my stress test showed no worsening of the dysrhythmia on exertion. Also the Echo showed my heart was slightly enlarged 59. Thanks for reading. Any more insight ideas for questions for the folks at Mayo would be helpful. I only get one shot up there for this consult/eval and I want to make the most of it. I'm having blood, ekg, echo, and chest xray done plus whatever else they may decide after consult.

[ddavey]

I was reading your post and it brought me back to the day my daughter was diagnosed with CM..  we were there for a routine check, a nurse at her school had mentioned her bp was low.  We had an appt with her pediatric cardiologist as she had been diagnosed  when she was 4 with a leaky mitral valve, never had any problems in the following 15 yrs.   I was watching her have an echo, waiting for her dr to show his student the mass on her mitral valve (he has always been fascinated by it and had done numerous studies on it free of charge over the years) and was hit by a hammer when he told me she needed to be admitted to the hospital immediately, that her heart was enlarged and that she "could die from this".   He had called an adult cardiologist, as she was 19 at the time, who came to his office and sat us down and explained that her ef was at 30% and that she would be admitted and started on coreg and vasotec.  We stayed with that cardiologist for about 8 months, but with no improvement in her ef even with a max dose of coreg we switched to a cardio out of the univ of mich who thought her cm may be caused by frequent pac's...  now after a failed ablation (almost all of the tens of thousands of pac's are coming from the left chamber and they are leary of ablating on the left due to the mass at mitral valve) and the addition of digoxin to her other three heart meds, her ef is at 42% and at this point not in heart failure.   the addition of digoxin has lowered the amount of svt and that is what seems to be helping.   There is still the looming question of what is causing the pac's and what to do about it...   is it caused by the mass at  the mitral valve and do they go in and take care of it??  we have gone back and forth about this for a year...  they are leary about going in (always do the least invasive first...)    my thought has always been that if going in and fixing it will have to be done at some point then they should do it while she is stable and her ef is up rather than to wait and do it when you "have to"...   I wholeheartedly agree with Connie about asking for copies of reports... having these has been what has gotten us this far, as I had a clue of what to ask and had a laymans knowledge of what was going on.    Wishing you the best...    Dawn  

[hohoho6]

Thank you for your reply. I am encouraged to hear from another young woman who eventually got better. I don't know my EF yet. I think the MD knew I was shocked at the news and gave me just what I needed to hear at the time. When you say the CM "resolved" can you explain? I keep reading that once the heart is damaged it  is mostly permanant but the symptoms can be controlled. I'm really pretty opimistic at this point but I can't help being a little worried and I want to make the most of my next appt. So other than asking my EF any other suggestions? Would I ask if he thinks the damage is permanant? I'm not sure if that's a fair question at this early point. The MD did say that I would not have any tests on my next appt so how would he know if I'm responding to the medication?

Thanks again for responding.
hohoho6 (mom to 4:))

[Momto3]

Sorry to hear about your recent diagnosis of cardiomyopathy.  I don't know if this will be of any help, but I'll tell you a little about what happened to me (just in case).  

I also have a long-standing history of MVP, and I also have mitral regurgitation.  I went for a routine echocardiogram to assess the leaky valve and I was diagnosed with CM (I was 45 at the time).  Beside the valve issues, I was also having thousands of PVCs per day.  Initially, it was thought the the CM was a result of the valve leak worsening.  However, it was ultimately determined that the frequent pvcs led to PVC-induced cardiomyopathy.  I underwent a couple of procedures and once the PVCs were under control, the CM resolved.  That said, there are a number of reasons for developing CM, including idiopathic (no known cause).  

Do you know your ejection fraction (EF)?  It is the percentage of blood pumped from the left ventricle.  Normal would be 55-70.  At the time of my diagnosis, my EF was 40.  My dad has CHF and his EF is in the 20s.  Listen to what the doctor has to say, ask for copies of your reports and ask questions (anything that you can think of).  Write down your questions so you don't forget.  Remember, there are no dumb questions, so ask about whatever is on your mind.

Connie