BigMetz
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BigMetz, November 23,  2018  3:48pm EST

Adjusting the best I can

Hello everyone,I'm new to this forum as of today.On July 6 of this year I walked into the emergency room for what was to be a 6 day stay.The diagnosis....bi-lateral pneumonia and heart failure.Subsequent testing via sonogram would determine my ejection rate to be 15%.Upon release and armed with a potent cocktail of drugs I responded rapidly and felt completely normal.I was tested and they found no signs of coronary artery disease.2 weeks ago I was scheduled for a 2nd sonogram where my Dr thought I would test normal(or be very close).It was a shock to both of us that my ejection rate was 30%. Yesterday I underwent a cardiac m.r.i. to determine scar tissue and verify ejection (which it did).I've always had an active lifestyle and have added a rigorous exercise program.I'm grateful for being within 40 miles of some of the best hospitals in the country,and also grateful for being symptom free yet everyday feels like a fraying tightrope.I thought it would be good for me to be in the company of others facing the same challenges. Thanks!

 

8 Replies
  • peterholders
    peterholders, November 24,  2018  10:37pm EST

    Your story sounds very similar to that of folks on this forum as well as my spouse's personal story (who had similar EF to yours). So how long did it take for you to go from 15% to 30%? Have you been responding to meds, and I presume you've been told about low-sodium diets, cardiac rehab, etc.

  • BigMetz
    BigMetz, November 25,  2018  9:01am EST

    It was 4 months before he would have me tested again and that's when I tested at 30%.I wanted to be tested right away(of course I really couldn't be ill).My meds are Entresto,Metoprolol,and Spironolactone.I haven't had any issues tolerating them and assume they are responsible for my improvement. I ride my bike on a rail-trail near me twice a week and do 20-25 miles on each ride(weather permitting).Have introduced step running and weight lifting into my daily routine and the low sodium diet has been in effect since my release.It's been tough not to let this spiral into a free fall.I had just completed a 20 month renovation on what is to be our retirement home(did all the work myself) and have been blessed with 2 grandchidren in the past 3 years.I truly understand your concern for your spouse and can only say to do everything possible to keep them motivated and celebrate every victory.

     

     

  • AHAASAKatie
    AHAASAKatie, November 26,  2018  9:09am EST

    Good morning and welcome to the Support Network. Thank you for sharing your story with us and please know that we are here to support you. I can provide the patient education information that we have regarding heart failure with you, and I see that others are already starting to welcome you. If I can do anything else, please let me know. Best Katie 

  • MikkelFinsen
    MikkelFinsen, December 12,  2018  1:01pm EST

    Hey BigMetz - great to hear you are feeling almost normal, and happy to read that you continue to improve.

    I'm scheduled for Cardio MRI 26 December, and rather apprehensive about the experience.  How was it?

  • BigMetz
    BigMetz, December 17,  2018  2:41pm EST

    MikkelFinsen I thought it was a breeze.It took about 45 minutes and the only thing I found awkward was holding my breath after exhaling. They asked me what music I liked and was listening to the Stones and Zeppelin the whole time.I don't mind the tight confinement and I expect that could be an issue for some folks.They placed a ball switch in my hand and that would signal the operator if needed in case there was a problem going on and you needed to get out.You'll be fine and I hope you get good results!

  • MikkelFinsen
    MikkelFinsen, December 18,  2018  2:33pm EST

    thanks again BigMetz

    I'm sure it'll be fine too, just not sure what to expect other than being inserted into a small chamber like a sausage, and just lying there.

    Will share outcome. Thanks again

  • AHAASAKatie
    AHAASAKatie, December 20,  2018  8:54am EST

    Hi MikkelFinsen, your description of an MRI makes me laugh. I can not tolerate them and have to be sedated. I have to have one on the 27th  to track down a lingering back issue. My doctor was able to prescribe a sedative to make it easier for me for me to rest quietly. Is this a possibility for you or would the sedative impact your heart function? It might be worth asking. Please let us know how things go and take comfort in that fact that you are who hates MRI's. Thanks Katie

  • MikkelFinsen
    MikkelFinsen, December 20,  2018  10:55am EST

    Hi AHAASAKatie - will certainly ask about sedation, but might just suffer for the time.  I need two MRIs that morning, with and without contrast.  I wish the doctors would share more details when we talk about MRI, as was to expect, but I take this as a learning experience.

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