Re: living with cardiomyopathy

Posted By Rob on May 29, 1999 at 14:12:09
During my first pregancy in 91/92 I began having irregular heartbeats & racing heart. I was diagnosed w/ mitral valve prolapse & panic attacks. I had some problems with "panic" attacks and was put on enderal 80mg. & xanax for my symptoms. When I became preg. in 95, I began having serious problems with my heart racing & irregular heart beat that continued after my pregnacy. I continued to complain to my Dr. that I did not believe that I had Panic disorder and finally found a cardioligist that took my symtoms (symptoms) seriously. He did a eco & stress test in march 98. The eco showed Dialation in the LV,  Mitral, tricuspid, & pulmoic regerg. I Failed to reach the 85 % required for my stress test. My EF in the range of 50%.  My Dr. put me on Atenolol 50mg. & monopril 10mg. I was hospitalized in March 99 for observation of my irregular beats & my Dr. did the test again only this time I had an Adensine stress test. It revealed (1) apical hypoperfusion defect (2) Ventricular dialation with stress (3) wall motion abnormalities with dialated hypokinetic, dyskinetic LV apex. my eco showed most the same results other than the one in march mentions possible right ventricular enlargement. My cath. revealed a EF of 46 %. I have asked my Dr. what type of c-myopathy I have and he said he may never know. From my own reserch I think it might be diolated . What do you think? Also he will not discuss with me my personal chances of sudden death. He has assured me that I will not have a heart attack because my arteries are clear & well open. I know that there is a risk of sudden death due to the arrithmias I have and would like to know what to do if I find myself in trouble??!. He has increased my monipril to 20mg & also added lasix. He cannot give me any meds. to control the irregular heart beats because he said that they are not safe. I have read about that but would like your thoughts on it. My symptoms are better since being put on the monopril but I still suffer from severe dizziness and moderate irregular beats especially before and
during my period, & stressful situations. He has advised me not to engage in exersise with out being monitored by certified cardio re-hab personel " just in case you get into trouble". I retain fuid quickly during moderate activity. I suspect it may be because my heart is less efficient during stress.?? Would you recomend cardiac re-hab?? My Dr. recomends I lose weight ( I have gained 50 pound in 6 years) but has left the decision of re-hab up to me. I have lost 10 pounds on my own since feb.  I realy dont have the energy I should have @ 35 yrs.old. I wear out quickly but am trying to slowly raise my endurence. I feel that my Dr. is not willing to talk about the down side of this deasese and may have other concerns he is not telling me. He is caring and compassionate. I saw somthing in his eyes when he met my young children ages 2&6. he said we would do the test again in 1 year to track the progression & I follow up every 3mos. and see my enternist every month. He talks positive but monitors me closely.I remain possitive but some times look at my children & cry .My main fear is sudden death ; I can feel my heat try to stop at times which sends my whole body into the fight & flight state.I know this is long and I do much appreciate your time and comments.     Rob      

[A-litle-clearer]

Posted By A little clearer on May 31, 1999 at 01:10:46
O.K. maybe my story was alittle long and questions not so clear. Also I wanted to give you some specifics about my test. thanks in advance for your help.
My stresss test results read;(1) Apical hypoperfusion defect consistant with profound myocardial ischemia or previous infarction with moderate reprofusion.   ? Is this saying that I could have had a heart failuar?
(2) Ventricular dialation with stress? Does this mean that my heart does not function well during exersise, and would or should it restsrict my activity as far as engageing in exersise?could this be the reason i retain fluid with activity?
(3) Wall motion abnoralities with diolated hypokinetic, diskinetic LV apex?
  What does this mean?
My Dr. says that I am at high risk for animia and congestive heart failure becase of the arrithmias and that I could develope blood clots in my heart because the blood does not flow normally.What is congestive heart failure and could you have it and not know it? Or could it have been over looked while I was beeing treated for panic disorder?
I had adverse reaction to the Anti platelet meds. am only on asprin theripy.
During my episodes, I have "multi focal" PVC's every 1 to 2 beats and they last from hrs. to days. It alters my life due to the fact that I have to lay down during them due to dizziness & lightheadedness & take xanax to control the anxiety or they get worse. Thanx for your help
With all the testing why is it hard to determine what type of c-myopathy I have?

What is your experience of % of sudden death with someone who is so asymptomatic w/ c-mtopathy?
Are anti arrithmia drugs as unsafe as i'v heard?  

[DIMA__0]

Posted By DIMA on June 03, 1999 at 17:57:20
I have been diagnosed with Congenital Heart Disease.
I have a pulmonary valve stenosis+pulmonary artery is dilateD a bit. In addition, my ejection
fraction is low 40s & left ventricle is thickened. I have bigeminy PVCs and AM SCARED
ABOUT MY LIFE PROSPECTS. My doctor says its NOT a big deal.
HELP, SOME INFO WOULD BE HELPFUL.
DMITRIY GUBERMAN.










Follow Ups: