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Waiting with a partial diagnosis. Can anyone offer insight?
I had a HA three weeks ago. No Stent. No open heart surgery. Lots of the standard meds. Low EF of 35-40.
Other than pain in center of chest, no other symptoms.
I am 53, in above average shape, eat well, and exercise regularly.
I felt fine before and I feel fine now.
I was sent for a cardiac MRI last week and will learn more in three days.
The diagnosis I have right now is nonischemic cardiomyopathy.
What I'm left with until Thursday is Dr. Google (much to my brother's - a doctor - dismay).
So, of course, I'm freaking out.
Does this situation resonate with anyone?
eddiepullin, July 29, 2019 4:01pm EST
Dr. Google will make you go insane. Trust me. I was 55 when I had my heart attack. I had signs 2 weeks before I finally went and got checked, big mistake. I ate right and was actually in the best shape of my life. So, my EF is 35%, and will remain there. I lost 1/3 of my heart muscle. 3 stents, 7 months later a defibrillator, a year after that, a new defibrillator and they added a pacemaker. I have no energy anymore. I work 3.5 years after the initial heart attack. I resigned this past May. Your situation could be better, no stents means no blockage, that’s great. I’m on meds as well, I stopped taking atorvastatin, generic plavix. I did a lot of research on that medicine and I had all the side affects, finally my Dr agreed to let me stop taking it. I wish you luck and hang in their. I’m alive and that’s a great thing. God bless you for a speedy recovery.
BigMetz, August 2, 2019 10:11am EST
If there's one thing I've learned since being diagnosed with dilated cardiomyopathy(non-ischemic), it's that every case is different.It's been just over a year now and my mind is in the right place and substantial progress has been made.My situation is similar in that I function very well and have little symptoms with a low E.F. Just over a year ago I was admitted with an E.F of 15% and severe pneumonia in both lungs(age 59 and in good shape).My situation was serious and I thought the lung issue was my chronic seasonal allergies.Really wish I could have known about where that unexplained 6 pounds came from! 4 months after being released I was riding my bike15 miles a day twice a week and felt normal.....my next echo showed 30% which was very disheartening.Sent for cardiac m.r.i. at 6 months (35%) and heart starting to reduce in size.The last echo showed 45% e.f and heart size normal.I've been trying to give myself a workout every other day and have taken 18 pounds off my 6' frame(now weigh 200).There really hasn't been much change in the way my heart feels climbing the ladder,it's a scary thought that I won't feel a decline if that starts to happen.I'm sincerely wishing you a good prognosis and hope you'll update us with the situation.This site and the words of encouragement from(real life people with real life situations) have been the most valuable tool in keeping my mind in the right place.It's a major aspect of the battle!! Healing thoughts.....(Not so big) Metz
Amelia1978, August 7, 2019 7:20pm EST
I am 62 years old and have always been a healthy eater and walked 3-4 miles a day. I went in for a physical back in January and my EKG was abnormal. I felt fine and had no symptoms. I was told to see a cardiologist and was diagnosed with non ischemic cardiomyopathy. My EF was 42 and was put on a beta blocker and Entresto. My recent Echo results showed my EF was high 40’s. I feel good and have started strength training - hopefully to strengthen my heart. I have learned after all these months not to Google any of this because Cardiomyopathy looks grim. All I can do is eat right, exercise and take my medication - the rest is up to my Higher Power.
1959LADY, August 13, 2019 3:41pm EST
I am 60 years old this fall and was diagnosed with idiopathic cardiomyopathy last October. EF of 30. I was started on Coreg, and Entresto and after 6 months my EF was still at
30. I switched Dr.'s to a Cardiac Heart Specialist instead of a regular Cardiologist. They immediatley started titrating the Coreg and Entresto up, something the cardiologist did not do.
Since June I have been on the highest dose of Coreg and Entresto and Spironolactone. I can't say I feel any different. I have days where I feel fine, then I have days where it
seems like I have a pinching in my chest and I feel a fluttering in my chest. I will have another Echo in October. 6 months after being on the highest doses to see if it has raised my EF.
If EF is not over 40 they will want to implant and ICD. I walk on about 2 miles a day and really do not have any restrictions on my day to day life because of this condition. The future is
scary because as stated in previous repsonses GOOGLE does not really have anything good to say. Praying everyday that I am one of the people that the "cocktail" of drugs helps.
In the mean time, I exercise, eat right and NEVER forget to take my meds. Has anyone taken a while to have the Entresto and other drugs show a positive affect?
eddiepullin, August 13, 2019 3:57pm EST
I’ve never taken either drug. I’m on a diuretic, a blood thinner, and a low dose lisinopril. I was taking for 3 years, but it was slowly killing me, so I stopped, with my Drs permission. My EF is 35%. I have both a defibrillator and pacemaker. Personally me, I was very active and hard working. I’ve lost lots of energy. I’m hoping the meds help, please read the side affects on your meds. Good Luck and God Bless!
BigMetz, August 15, 2019 11:41am EST
I take a similar cocktail of drugs 1959LADY. I'm on Entresto,Metoprolol,and Spironolactone.I was started on the lowest Entresto dose and bumped at 6 week intervals until I reached the highest dosage(all the while getting regular blood tests and sending vitals to the Dr daily).I had a history of borderline high blood pressure and was able to tolerate the increased dosage without much problem.It's settled in at a comfortable 105/70 with an occasional dip to 95/70.It took 4 months to go from15% to 30% at 5 months the cardiac mri showed 35% and my latest echo 2 months ago showed 45%.It's been 13 months and very difficult not to get discouraged.I'm optimistic that the increased dosage will have a positive return on your next echo.Please try and stay positive and let the healing take place in a good mental environment.I hope this helps and look forward to hearing good results. Jay
1959LADY, August 15, 2019 4:48pm EST
When I finally changed to the Cardiac Specialist in my area they bumped the Entresto and Coreg every 2 weeks from the base dose to the highest. My BP mostly handles it.
Some mornings I'm really low like 75/50. I have to drink fluids and move around til its over 90 (top number) then I start the meds.
Did your EF start to move 4 months after you reached the max dose? I am so praying that it goes over 40 so I don't need to get an ICD implanted. I refused to wear the Zoll vest after
the specialist said its really not strict protocol for my condition since I do not have coronary artery disease.
At this point I really don't have to stop doing anything. I might get a little winded if I walk up a large hill or theres a huge staircase. Thats it. I walk on the treadmill daily and
I'm not winded. This whole thing just totally blows my mind. My primary Dr caught this because I was throwing PVC's. He didn't like it and ordered a nuclear stress test.
BigMetz, August 16, 2019 11:32am EST
Same situation for me. I had bi-lateral pneumonia which added stress to a weakened heart (I had no idea....avid cycler,till my half acre field etc).Felt pretty close to normal with an EF of 30 and was shocked when the improvement was minimal.My Dr didn't think an ICD was necessary because I was symptom free and also have no signs of heart disease.My EF moved slowly up from the begining and seemed to really get better after passing the 6 month mark.I have no restrictions and bike twice a week(15 miles at a clip).Having a close call like this after trying to "power through" pneumonia and ignoring a blood pressure issue because "I feel fine" makes me own the title of hard-headed.I pray that your condition improves after moving to this higher dose and that you can let time not stress you too much.They believe this could have been affecting me for 2-3 years prior to being diagnosed.Still no idea on the cause(truly don't worry about it anymore) and am just so blessed for the good Dr's and the nurses (angels from heaven) that treated me.Hang in there! Try not to over stress and let the medications do their thing! Jay