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I have not posted individually before just replied with my situation on other posts.I have questions of my own after reading
posts from others over the past year. Recap. Was diagnosed with Cardiomyopathy with LBBB about 1 year ago. EF 30 and mild LV enlargement. Changed Dr after 6 months, as cardiologist did not titrate drugs to the highest levels (spironolactone, Entresto, and Carvedilol) and EF was still 30 with LV slightly less enlarged.I now see a Heart Failure Specialist at the clinic in the Hospital near my home. Have been on highest levels of drugs since end of June and will have another Echo in late October. I really have no symptoms. Occasionally winded if I go up and down steps. Sometimes I feel a slight fluttering in my chest at night. It doesn't wake me up but I'll feel it once in awhile if I wake up during the night. I do not wear a vest.
My questions are about the testing done. I have had a nuclear stress test and multiple Echos. I have never had a cardiac MRI nor has either Dr mentioned having one. Does it give a better reading? The only other test mentioned was a MUGA which I have not had and again it hasn't been suggested. What is the difference in all the tests and is one better than the other for getting a true EF? Also, no one has ever mentioned my BnP. Should I be concerned? What does that show? Whenever I have bloodwork done they just say all is normal.
Thanks for any input. Just trying to navigate this situation and keep my head on straight. Some days are hard. It's the first thing I think about when I open my eyes and its the last thing that goes thru my head before I fall asleep.. Its consuming me.
Rmp829, September 13, 2019 7:38pm EST
Hello, well I’m in no ways an expert. I was diagnosed with heart failure in April of this year but I’ll try to answer with what I’ve experienced.
I dont know what LBBB is but I have cardiomyopathy. EF is 28%. I’ve never had a MUGA scan but I’ve had two Echo’s, nuclear stress test and one Cardiac Mri. The mri gives a more specific percentage whereas the echo gives you a range. My echo in july was 25-30% and the mri was 28%. I don’t take Carvedilol (but my mom does). I’m on Entresto, Spironolactone, Metoprolol, baby aspirin and lasix. My next Echo is coming up this Tuesday. I’ve been wearing the Lifevest since April (a pain). And I have severe low back issues.
I go to CHF clinic every two weeks and they do bloodwork including the bnp. The bnp lets them know if you are retaining fluid and how bad. My numbers are usually good/normal too but they should check your bnp a few times a year. More if you usually retain fluid or have symptoms. I never get swollen ankles or sleep on multiple pillows. Just tire easily, sometimes exhausted! Short of breath when I walk too far or do too much. And I have this strange burning feeling in my chest but they keep saying its acid reflux 🤷🏽♀️ But the medicine doesn’t make it better.
I too think about this heart failure thing morning and night. More at night. But we can’t drive ourselves crazy worrying. I just follow the docs orders and pray a lot. But it’s not easy.
Write your questions down ahead of time as you think of them for your doc appts it helps
Keep us posted. Hope you get some answers.
AHAASAKatie, September 16, 2019 9:24am EST
1959LADY, September 17, 2019 5:29pm EST
I do not have to return to the CHF Clinic until the end of October. Last appointment was in mid July. I do not retain fluid and I am not suffering from fatigue. I walk on the treadmill
and I walk like 55 minutes a day without being winded. That is just the amount of time I give myself to exercise because its boring,I could keep going. Dr. told me that as long as I can walk and hold a conversation without being winded this excercise is ok. I walk at a 3.3 rate. They did say not to use the elevation.
I hope that the "cocktail" of drugs is doing its job. Won't know until end of October. At that point I'm wondering if they will suggest and ICD and pacemaker.
I'm hoping that the medicine is starting to do its magic for you too. Keep the group posted on your progress.