1959LADY
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1959LADY, September 16,  2020  10:46am EST

Annual echo looming

Haven't been posting in awhile. Was feeling quite good since meds were titrated to the highest doses last year. Entresto, Coreg and Sprinolactone. Ef was up to about 40. Obviously 6 month checkup in April was cancelled because of Covid. Felt great. Appointment and echo will be in two weeks. 11 months since last echo. Lately have been feeling different.  I can't say bad but I think that some old symptoms are re-emerging.  I'm not breathless but I have  loss of appetite and I sometimes feel flutterings. Don't know if I'm being crazy because visit is coming up or things have taken a turn for the worse.  Anxiety is starting to take over. It's been 2 years next month since diagnosis.  How long can drugs keep raising EF or keep it stable and symptoms at bay?  I'm in pretty good shape for my age. Not overweight, can walk on the treadmill and not be breathless.  Guess I just needed to vent and get some feedback from friends in the same sitiatuon.  Thanks for listening. 

3 Replies
  • marshamd59
    marshamd59, September 16,  2020  11:11am EST

    Hey 1959Lady,

    I'm glad to hear you've been doing well overall and I totally understand everything you're saying. The mental game is one of the hardest things. I feel like I'm always monitoring how I'm feeling. It's hard to just relax and enjoy life sometimes. It's always in the back of your mind if things are going to take a turn for the worse. My diagnosis was in 2006, so meds can keep you going for a long time. That being said each of our journeys are different. Just know meds can work and keep you well for many years. Also, as things do come up there are lots of things they can do to fix them and get you feeling better again. It's totally natural to have some anxiety. I sometimes wonder if some of the meds cause it to be worse. Anyway, praying all will go well with your ECHO. Let us know. 
    Take care!

    Michelle

  • NewPacer73
    NewPacer73, September 17,  2020  7:11pm EST

    1959 Lady: Looming is how I felt. My annual echo two weeks ago was somewhat worrying because I did not know how it would turn out. It's HUGE for us. But, it turned out to be about the same as the one last year with no new issues. Yay! So sending those great vibes your way. Medicine has been keeping me going for 10 years now and my quality of life is really good. We have surprise challenges along the way, but for cardiomyopathy patients, that's kind of the name of the game. I have one request. Please, please let me know how it goes. Since I use the patient portal a lot, I knew the next day I was okay. Checked that one off for another year! Now have flu shot...check... echo... check...and soon my annual mammo. Lots of breast cancer in my family, so I thought I would catch that gene, but I got my Dad's heart gene instead. Once the mammo is done, that's it for me for 2020 on check ups. The good news for us is we are on an annual check up schedule, which, to me, says they are a lot less worried about us than we are. smile  The pandemic means we have to be careful, but still live a good life. Hang in there. I'm sorry you have this cardiomyopathy thing, but it sure is great we are dealing with it during a time when they have a huge arsenal of help now for this in 2020. And we are being watched. Not long ago, there were few options for us. Now they know so much more. So keep me posted. Cyber hugs and elbow taps. Stay safe. We can do this.

  • 1959LADY
    1959LADY, September 17,  2020  8:16pm EST

    Thanks Michelle and NewPacer73 for the words of encouragement and good vibes!  I don't usually think about the cardiomyopathy but lately I've been dwelling on it.  I know it's not good and I try to get my head back in a good place.  I will have the ECHO right before my appointment with the doctor, so the results will be immediate.  Within 3 months of the highest doses last year EF went from 30 to almost 40. Dr said he wouldn't be surprised if it continued to rise.  🤞🏻  I was thinking all was good until lately  like I previously stated.  I guess I'll find out on the 28th.  I'm going into this appointment thinking they will want to implant a pacemaker and ICD. I'm trying to prepare myself for that just in case. Does anyone know what other, if any drugs are used to treat symptoms?   I'm hoping the EF has not declined and things are at worst case status quo. 

    Mind games are my worst enemy.  I'll keep the blog updated. Thanks again.

    Kathy 

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