Jgw6619
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Jgw6619, July 12,  2020  8:34pm EST

Hypertrophic cardiomyopathy - newbie

All this is new to me,had my icd implant may 1st ,been diagnosed with OHCM and Ventricular Tachycardia ,been experiencing strong palpitations so i wanted to see if anyone else has had these issues.

4 Replies
  • AHAASAKatie
    AHAASAKatie, July 13,  2020  9:30am EST

    Good morning, I am so sorry that you are having to manage all of this. It's a lot to deal with all at once. I can share the information that we have on Hypertrophic cardiomyopathy and Tachycardia.  What does your doctor say about the strong palpitations? Are you comfortable with the treatment plan that has been outlined for you? 
    Please know what we are here to support you as needed. Best Katie

  • NewPacer73
    NewPacer73, July 19,  2020  1:26pm EST

    I have obstructive cardiomyopathy first diagnosed in 2011. I had afib and other cardiac challenges before that. Mine are electrical, not blockages issues. Like many cardiac issues, it takes awhile before an individual plan was created as meds need to be adjusted, the actual state of  your personal situation is assessed, etc. Almost all of the nine years have been pretty darn good post diagnosis and transitioning into a fixed plan. For me, it's really important to find a cardiologist who is responsive to my concerns. I went thru 3 before I found a great match who answers all concerns on the portal usually the same day and most issues have been resolved using the patient portal. That's especially helpful in light of the pandemic. I have had rythm problems along the way and those turned out to be handled with adjustments in meds. My current biggest challenge is this quarantine time with the pandemic and I still haven't created the best exercise and replacement for these feelings of social isolation, but I use several things for the latter one. I use this blog for contact and a meetup group I did a lot with pre pandemic. I joined Mended Hearts and while we can't have meetings yet due to the pandemic, those members are always ready to help out when things get tough via emails and phone calls. My one issue that has recently developed is sleep pattern changes due to being in the house full time now. Once this weather changes, I plan on doing more walking, as I did before. It's too hot for me now. So, it's time to be creative to stay active for me. I had a recent hospital stay for the old Type A H1N1 flu, then the pandemic, and then the sudden death of a brother who assigned me his estate to manage (and it was a very complicated deal since my brother thought he would have more time to organize things). Once I get some semblance of a more normal lifestyle going, I think things will definitely improve. Due to all of that recent stress, I do have a counselor I talk to via telephone to figure and plan changes little by little. But the cardiomyopathy and the palpitations/arrythymias have been resolved and are not a problem. I will admit that this pandemic makes me worry more, but that's when I use the vehicles I have established to get answers for cardiac issues asap using mostly the portal. I just had my first annual pacemaker check up appt and next month is the annual echo. When things seem to make me feel ansy, I get in the car and drive somewhere, even if it's to sit on a park bench at a lake for a minute or two or I call someone just to check in on them and me on how to handle this messy pandemic. If anyone has strategies or knows of a link to find information on what cardiac patients can do as this pandemic worsens, let me know. @jgw...getting used to this problem seems overwhelming initially as I bet most cardiac problems are. One I got my feet under me, the cardiac thing seems to have taken a back seat. I'm now focused on how to create more activity and do things I love to do within the restrictions of the pandemic and that's taking some planning. Let me know if I can help with any specific issues you need some support for, since that part of my life is currently doing fine. It was terribly scary in the beginning. It's a transition. Cyber hugs to you and write to me anytime. We are truly in this together. I'm here to help anyway I can.

  • AHAASAKatie
    AHAASAKatie, July 20,  2020  9:13am EST

    NewPacer73, thank you for such a great response!  Jgw6619, please check-in and let us know how things are going. There is so much going on in the world now, please remember we are a warm community of survivors and caregivers who support each other. 

    Best Katie

  • NewPacer73
    NewPacer73, July 20,  2020  12:37pm EST

    @AHAASAKatie and the gang:  I just now got my primary care doc call with blood test results. The pandemic has presented some real challenges to me and I was concerned about the results. All cardiac numbers are excellent, including the CHF numbers. I was shocked because I had been feeling pretty unwell the last ten days. But woke up today with a new attitude, fully rested and already good news comes my way! For those who have CHF and/or HOCM, just hang in there. I take one day at a time. I am eating really healthy lately and can feel the weight of the pandemic isolation feelings subsiding. I'm kind of boneheaded, so change is not easy for me. Keep the faith.  Actually, there is nothing in the blood tests across the board to worry about. Vitamin D has gone up. Kidneys good. Cholesterol great. Have no idea exaclty how I am pulling it off, but my plan has always been to take one day at a time and try to do the best I can with it. Love and cyber hugs and fist bumps to all. It's a great Monday here!!! Yay!!! PS My doctor ended the call with please do not go out in the heat unless you obviously must go. I'm in Virginia and the heat is overwhelming. Stay safe.

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