AlexMat
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AlexMat, May 8,  2020  10:48am EST

Cardiomyopathy

Hello Everyone,

I am 42 years old, newly diagnosed with cardiomyopathy with EF 15-20%. Stress test result 35% EF, with small apical fixed defect. Catheterization angiography was negative for occlusion. I also has atrial fibrillation during the catheterization but resolved back to normal rhythm without medications in 1-2 hours. 

I have been on medications for 5-6 weeks now. My tolerance for activities improved after the first two weeks but after that, it is like up and down everyday.  I am still having chest pains occassionally which happens whe I'm resting. Sometimes it gets so bad that my chest and neck gets tight , I am out of breath, This is relieved by sublingual nitroglyerin.

I am staying strong and hoping that this will get beetr consistently soon. However, the impact on my inability to work or even get through daily stuff at home, the fatigue,  and financial limitations I am experiencing right now gets overwhelming. 

 

7 Replies
  • eddiepullin
    eddiepullin, May 8,  2020  12:05pm EST

    Good morning, I understand the fatigue issues, mine comes from the meds I'm on, and the fact my heart is weak. I worked 3.5 years after initial heart attack, but was instructed to stop last May due to it being a physical job. I have an EF of 20, a defibrillator and pacemaker. Last November I had 2 additional stents put in, totaling 5 now. I'm 60 years old, my dr says he wants me to walk 30 minutes a day, but most days I just don't have the energy. In March I went from 25 mg of metoprolol to 50, than 100. This med sucks my energy. But....3 cardiologists say to continue. All I can say is hang in there. Try to stay active as possible within your limitations. Good luck to you and I'm praying it all works out for both of us. 

  • jerzeycate
    jerzeycate, May 10,  2020  12:32pm EST

    Good Morning,

    Unfortunately recovery is a marathon not a sprint. I think that was the most frustrating part of all of this.

    When I got **** (viral infection caused cardiomeylitis, DCM, decimated the electrical system in my heart, Total AV Block, AFib, CHF--and all the problems she brings along with her)) left me with an EF of 11%. We were told that without a transplant I had "3 months to live."  Not eligible fortransplant, My husband was advised to "Take her home. Mkae her comfortable. Get her affairs in order." What a mess. I was just 53 years old with no history of any heart disorder and a clean cardiac bill of health just 3 months earlier.

    That was 7 years ago. SEVEN years Ago.

    I have not had a transplant.

    They did find an experimental complex cardiac device that took over the electrical functions inmy eart enabling medications, and major lifestyle changes to do their magic. It took a bit of time and I had multiple complications... But today my EF is 55%. CHF is in remission ("compensated" in Cardiac Terms) COPD has resolcved with no residual effects. Kidney issues (created by cardiac meds I had bad reactions to) have resolved with no residual effects. Migraines (caused by low blood volume from decreased cardiac function) have resolved with no residual effects. 

    Today my ability to complete ADL is a far cry from what was expected and I swim daily along with walking 3 miles a day.

    So....

    Do your research on your particular diagnosis and treatment plans.

    Follow your medical team recommendations as if your life depends on it (because it just may).

    If you do not trust your medical team--get one you trust with your life.

    Read everything you can find on this site regarding living with cardiac issues. Dietary,  exercise, lifestyle (including stress management) changes are crucial to our well being.

    Start your new life.

    It's A Great Day To Be Alive...

    Best to you,

    JerzeyCate

  • eddiepullin
    eddiepullin, May 10,  2020  2:04pm EST

    Hi jerzeycate, do you still take lots of meds? I keep fighting with 1 cardiologist over atorvastatin and metoprolol. I think these are doing more harm than my low EF, making me feel exhausted. I know everyone is different, but I would love the energy to walk just 1 mile a day. Thank you 

  • NewPacer73
    NewPacer73, May 10,  2020  7:35pm EST

    @dexm: For me, life right now is overwhelming. As a cardiomyopathy patient of at least ten years, this pandemic adds a whole new dimension of worry. So what I do is report in via the patient portal what's going on with my heart when it's worrisome. Almost everytime, it's minor and not as serious as I can conjure up in my head. And I do everything including gloves/masks/disinfectant, etc to avoid the covid issue. When I send in data to the cardiologist, sometimes it signals a need to change meds or dosages. They tried different combos and right now, I am in decent shape with the fatigue and the limitations of what I can get done around the house. I have to teach myself that term we hear a lot, "a new normal" and accept that for now, my life has changed and learn to accept the way things are. I think what you need more than anything is time. It took a long time to get the magic formula of what I needed to maintain an acceptable lifestyle. Just stay as healthy as you can, very carefully watch your diet, report in symptoms, data like BP, HR, etc to the cardiologist via the patient portal, and give things time. By the way, for me, chest pain turned out to be GERD and once on those meds, that stopped. Give yourself time to figure it out.  Stay on this blog and keep us posted with reports on what's changing, what's getting better and worse. I think it's obvious that there are many people here who have seen a lot. Cyber hugs, elbow tap and know I care about how it's going with you. Use this outlet as much as you can. 

  • jerzeycate
    jerzeycate, May 10,  2020  8:04pm EST

    Hi eddiepullin,

    Last year, year 6 in my saga -- after 2 yeats of my EF  and BNP being stable,, my team reduced the number of cardiac meds I takke by half and those I stll take are at half the doseage. Please note that the damage to my heart was viral in nature. I'd had a perfectly norma full cardiac workup done, because of family hstory(including a catherization due to a false positive stress test during the worup) just 12 weeks prior to becomin suddenly critically ill. 

    Within 2 weeks of the med changes I had ess fatique and more energy. 

    Best Wishes...

    It's A Great Day To Be Alive...

           Cathy

  • eddiepullin
    eddiepullin, May 10,  2020  8:16pm EST

    Hi Cathy, I'm in year 4 of my nightmare. Thank you for your advice, I appreciate your help.       Thank you,                                                         Eddie 

  • AlexMat
    AlexMat, June 20,  2020  4:10pm EST

    Hello everyone, 

    Thank you so much for the kind words and support. 6 weeks after diagnosis, my EF increased from 15 to 25%  but I was feeling worse. Worsened episodes of chest pains, palpitations, shortness of breath, lightheadedness with limited walking and basic activities in the house.  Also had swallowing problems I couldn't eat feeling congested at the throat and chest, stomach bloated and pain. Stopped anticoagulants, felt better for 2 days then started up and down cycles of suddenly getting severely fatigued and moderate short of breath, cold arms and legs, BP 90s/60s even 88/58 at times - lasting 30 minutes up to 1.5 hours ordeal. My neck and jaw would get tight following the chest pains, hard to breathe. Referred me to Gastro, waitingfor official results of Barium swallow but radiologist said no swallowing problems. Carvedilol was changed to low dose with improved fatigue and  breathing. Started Entestro, tolerating better after 2 weeks adjusting to it. Doing cardiac rehab now with heart failure stage C. MRI next week. 

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