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I am NEW to this forum, and in dire need of support. I was diagnosed in January 2020, with Cardiomyopathy. I have been an emotional wreck!! I stuggle day to day with fear and anxiety to the point that I have become fearful of just going outside. I am SO physically exhausted that I struggle getting out of bed. Following that diagnosis (a year later) I was found to have Atrial Flutter. Two weeks ago I underwent a Cardioversion procedure to hopefully get me back to a normal sinus rhythm. I see my cardiologist in 3 days, for echocardiogram to see if the procedure worked. In the meantime, I'm also awaiting lab results from endocrinologist to rule out possibility of thyroid dysfunction. Has ANYONE in this support group experienced OR whose heart problems were a direct cause of thyroid problems?
1959LADY, March 21, 2021 9:02am EST
I completely understand the anxiety of the diagnosis. I also have cardiomyopathy. Was diagnosed 2 1/2 years ago. Drs do not know what caused it. They said I had either a virus that attacked my heart or it could be genetic. I was diagnosed as hypothyroid at the age of 38 and with cardiomyopathy at 59. I was never told there was a correlation.
Hopefully the great meds that are available now are controlling your Cardiomyopathy. They are working quite well for me. Increased my EF from 30 to 50 within a year of being in the highest does of the 3 meds. I was having PVC's prior to the meds and I do have left bundle branch block. No other arrhythmia.
Best of luck to you with the cardio version and the thyroid testing. Keep us up to date on your condition. Have faith in your Drs and team. Be your own advocate and if you feel Compelled get a second opinion for treatment. I did and it was the best thing that I did. There's hope for a normal existence. I was so depressed and non functioning for awhile too. It will pass when everything comes together.
JenniferJ66, March 31, 2021 9:30pm EST
Hello 1959 Lady ,
Your story is so similar to mine. Is there a correlation to thyriod disease and cardiomyopathy? I was diagnosised after the birth of my last child, I have 2 biological who are 10 years apart, that was in 2000. It has been a battle since. There hasn't beeen a day that goes by that I don't think of it at least once. As the years went on I worried about it less and less, until this last month. After undergoing an angiogram for chest pain, I was told that my EF is 40, now that is after having a solid 51-56 for the last 8 years. You see in 2011 I had a reoccurance of heat failure again and became a proud owner of a ICD, Cardiac pacemaker and Defibrilator. It was just replaced a year and a half ago. Just before COV'ID hit. In April of 2020 I was diagnosised with COVID and was very sick for 3 weeks. Now a year later I may be back in Heart failure due to COVID. I am going tomorrow for a MUGA scan to determine what my true Enjection Franction is. I am beyond nervous. My cardiologist said that is the EF is 50 or less Entresto is the next step. I just lost my best frend to stge 4 breast cancer and she was my only friend, true friend, I could call her and just cry or scream or laugh or curse. She never judged me. Now I have no one to talk to. No one who will love me no matter what. I really feel alone. Well thanks for listening. If you have any advise I would love to hear it.
GJM2404, April 5, 2021 8:09am EST
Hi. I was diagnosed with dilated cardiomyopathy and heart failure in August and I am exhausted most of the time. I am a 48 year old male and my life has changed. I was suicidal. I am still wrought with bad feelings and fear at times but my thoughts are getting better. I am on Entestro and my EF went up Perhaps yours will too. Remember your friend and think what they would say to you now. The best thing you can do is what you have done here. You have reached out. If you can do it once, you can do it a thousand times. You will see the people who truly care. They do exist. Do what you can for yourself and keep knocking on doors. Don’t ever allow yourself to be treated like a number because you are not. You will find allies. The rest, don’t worry about. You are always loved, no matter what. I’m loved no matter what and believe me, there’s a lot of matter what! Thanks for reaching out,it gives ME strength.
AHAModerator, April 5, 2021 10:13am EST
Hello everyone. Thanks for being a part of the Patient Support Network and sharing your experiences.
I wanted to jump here and remind everyone that we have some resources on cardiomyopathy that may be useful here:
We also have some resources on managing your stress which may also be helpful for everyone:
We're glad you're all here and connecting with each other.
SUZgd545, April 6, 2021 11:39am EST
I too am new to this site, but I was diagnosed with hypertrophic cardiomyopathy about 14 years ago. It is very scary to find out something like this. Two years ago I had my first episode of atrail fibrilation and was hospitalized for three days. A couple of months later I had cardiac ablation surgery (an almost 7 hour same-day surgery). I haven't had any majot afib episodes since, but "flutters" as you said. Mine usually occur when I go to bed. I have found that if I do some deep, slow breathing it helps to calm me and the flutters usually go away. I also have to concentrate on thinking about calming, soothing things instead of things that upset me.
I hope that you will be able to find a cardiologist and staff who can help calm your fears. I too still have fears, but try to stay positive. It can be frustrating when family, friends or coworkers don't understand the fear and stress that come with this.
Best of luck to you.