TonySS
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TonySS, April 9,  2021  8:10am EST

Non-ischemic cardiomyopathy

Hi Everyone, 

In December 2015 I had an ablation for SVT. Fast forward to November 2020, I went to the ER because I thought I was having palpitations due to stress. The ER doctor did all of their screening, test and xrays but didnt find much and i was told to follow up with my primary care physician. My doctor ordered a stress test, echo and Holter monitor. Results come back and i was diagnosed with cardiomyopathy and an EF of 30. My doctor prescribed Entresto, metoprolol,  spironolactone and atorvastatin. Since the day I started the meds, I haven't felt like myself but I've been taking them religiously. I have been dealing with a unwell or sick feeling everyday, upset stomach, fatigue and hunger issues shortly after eating. Its like I never feel full. Trying to eat right, its like I'm not getting enough calories. I've even lost 60+ pounds since November without trying. I've talked to my doctor but he keeps saying I'm on the right protocol for the cardiomyopathy and sent me to see a GI doctor. We've  done test and are trying some things now. 

A couple of days ago I received the results from a second echo (4 months later). There was no change in my EF - still  30! 

I'm so disappointed and can feel the depression. I thought these meds would improve my EF. I'm only 50 and have young kids. I'm not sure what our future holds. 

Even with my condition, should I have a sick feeling everyday? What have you done to ease stress and take your mind off of your condition? 

Thanks for your responses.

  • AHAModerator
    AHAModerator, April 9,  2021  9:01am EST

    Good morning, 

    Thank you so much for sharing your experience with the support network. I am so sorry to hear about the symptoms you are experiencing every day. Unfortunately, I am not a medical professional, but it might be worth working with your current cardiac care team to come up with a solution, or consider reaching out to another doctor to get a second opinion. I can share with you this resource on Finding the Right Doctor, as well as this one on Mental Health and Heart Health.

    Please keep us updated on how you are feeling. 

    Best wishes,

    AHA Moderator

  • TonySS
    TonySS, April 10,  2021  9:15am EST

    Thank you Moderator for your comment and valuable resources. 

     

  • Polar87
    Polar87, April 10,  2021  11:58pm EST

    Hi Tony. I was diagnosed with heart failure and cardiomyopathy in 2018. I was 56.   My echo in Feb 2018 was 30-35 In September 2018 it was at 40. In March of 2019 it was at 55 And in August 2019 it was 65.  My situation was different than yours. My cardiologist pegged it as due to Afib and lifestyle, I was put on metoprolol, lisinopril,eliquis and flecanaide and changed my habits. But what helped me after I got that first echo was that I told myself I would give myself a set number of months and no matter what the numbers were during that time that I would not make any judgments as to how bad it was until that time had passed, as my Afib was so bad at the beginning and I felt so sick that all I could think about was bad stuff.  And I was so lucky I got better in that year and a half after the first echo.   I hope things get better for you. 

     

     

  • TonySS
    TonySS, April 11,  2021  4:16pm EST

    Polar, 

    Thanks for your reply. Your EF has recovered quite well. I pray that you continue to get even better. I'm going to give mine more time. I hope the medication is working. I've  been taking my meds, walking atleast 30-45 mins per day and restricting my salt intake which is hard because its in everything! I guess with the things I've read online about Entresto, my expectations were high only to find my EF didn't go up. Its stable and didn't go down and thats a good thing but going up would have been the pick me up I need. I just want to get rid of this "unwell/ sick" feeling that l've had since beginning these meds. Is this and being hungry all the time just part of the disease? I didn't have these problems before.

    Thanks again for your well wishes. 

  • GJM2404
    GJM2404, April 13,  2021  4:23am EST

    Mate, I understand. I am 49 this month and last August was diagnosed with dcm and hf. My EF was 26 per cent. It has since gone to sixty percent in about six months but I still feel like (you know what).  The medication amounts and when to take them sometimes needs to be changed. Don’t ever worry about getting a second opinion, either.  Some things take time. Be your own advocate. As for the mental health part, I have found it great to talk. I have shed many tears. I try to control the things I can control and not spend too much time on those things that I cannot. It’s easier said than done!  Chatting here’s a great start. Keep going. 

  • TonySS
    TonySS, April 13,  2021  4:44pm EST

    GJM2404, 

    Sorry to hear you are not feeling all that great either. Wow what an increase in your EF in just 6 months. I thought with an increase in EF I would feel better. I guess that may not be the case. 

    What meds are you taking?  

    I'm trying to be my own advocate but I feel like no one is listening. The doctor just nods his head and tells me I'm on the right protocol. 

    I'm going to take your advice and try to talking more about my condition and see if that helps. I've pretty much kept to myself, trying not to continually burden my family. I spend a lot of time worrying about my condition and reading whatever I can find on the internet. I know, not a good thing. 

    Thanks for your words of encouragement and you keep on going too. Hope you feel better soon. 

  • SUZgd545
    SUZgd545, April 19,  2021  11:46am EST

    Hello-

    I didn't see a mention of if you have sought out a cardiologist team yet. If not, I would pursue finding a highly recommended cardiologist. I have two now, with the second one joining my team after doing my ablation surgery. They are literally my lifesavers. You can feel completely comfortable asking them anything! And because this is their specialty, they have heard the questions before and have the expert answers ready. 

     

    It is very difficult to have gotten the news that you did, and I know from experience that depression and fear can follow. Best of luck to you on your journey of finding "your team", and I hope that things will look up for you soon!

     

    Take care!

  • TonySS
    TonySS, April 20,  2021  6:21pm EST

    SUZ.

    Thanks for your advice. I'm trying to build 'my team' but its been difficult. I had an appointment with my cardiologist today and he wants me to meet with the EP to see if we should consider another ablation before looking at an ICD. 

     

    I'm just trying to keep positive and keep moving forward. 

     

    I appreciate everyone's comments, help and prayers.  

     

    You take care too.

  • SUZgd545
    SUZgd545, April 20,  2021  6:29pm EST

    Hang in there, Tony!! It can be a scary, bumpy ride for sure. I try to keep in mind that stress is the last thing I need, and try to stay calm, but that can be easier said than done sometimes!

     

    Take care!

  • marshamd59
    marshamd59, April 26,  2021  11:46am EST

    Hi Tony,

    I was diagnosed with cardiomyopathy in 2006 my EF has been up and down. The road is different for each of us. I've had great years and tough ones since my diagnosis. The most important thing is finding the right team. Don't stay with drs who you can't communicate with. It took me sometime, but I finally have a great team and it makes a huge difference. Also, you might ask your dr about cardiac rehab. It's a great program and you meet others in similar situations, so you know you're not alone and can get advice and encouragement from each other. Also, it's not a death sentence. My EF has been in the 20s for a long time and I'm still kicking! The meds take some time for our bodies to adjust to also. That being said there are certain meds I cannot tolerate. You have to get all that figured out with your dr. That's why is so important to have a dr who listens to you! How's your blood pressure? Mine is very low and that's one reason I have a hard time with some of the drugs. For sure, you must always advocate for yourself and it can be a hard thing, but listen to your body. You know better than anyone when things are just not right. It's a journey, but it can be a long and successful one and you can feel better. 
    Wishing you all the best!

    Michelle

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