Anyone have input on living with symptoms from cardiomyopathy?

Posted by retirement75 @retirement75, Apr 14, 2022

Does anyone have input on living with symptoms from cardiomyopathy, I.e., shortness of breath, angina and heart arrhythmia. Other than meds, it’s a challenge to mentally accept and live with this.

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Retirement75. Hi, friend. I am a little older than you, but many of same symptoms and dX, cardiomyopathy. 1. ALWAYS be sure your O2 reader has fresh batteries. If you don't have a reader, get one. 2. Walk as you can. 3. Keep your weight under control. 4. Eliminate stress. 5. focus on a vegetable diet. 6. Get a FULL WHOLE Genome analysis, and focus on cardiac genes. One good source is Sequencing.com. Do a search with Genome Explorer for hyper- and hypo-cardiomyopathy so you can judge your own processes, such as needed minerals, etc. 7. Study HPO (human phenotypes) for new ideas. 8. Study Google and Wikipedia for "cardiomyopathy". 9. Make a list of any disorders or diseases you may have which might affect your heart, BP, etc.. 10. Go online to the top labs and clinics and look for webinars about the heart and/or cardiomyopathy. Mayo, Johns Hopkins, Cleveland Clinic, City of Hope, MD Andersen, Boston Mass General, Univ of Helsinki Hospital, etc. 11. Lay off the salt. 12. Be certain you are Covid vaccinated. 12. Most importantly, take responsibility for your own physical, mental, spiritual, relational, emotional health. oldkarl

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Yoga, walking, plant- based diet and staying optimistic with Loving Kindness Meditations as well as gardening keeps me calm and helps to reframe frustration and low points for me.

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@oldkarl

Retirement75. Hi, friend. I am a little older than you, but many of same symptoms and dX, cardiomyopathy. 1. ALWAYS be sure your O2 reader has fresh batteries. If you don't have a reader, get one. 2. Walk as you can. 3. Keep your weight under control. 4. Eliminate stress. 5. focus on a vegetable diet. 6. Get a FULL WHOLE Genome analysis, and focus on cardiac genes. One good source is Sequencing.com. Do a search with Genome Explorer for hyper- and hypo-cardiomyopathy so you can judge your own processes, such as needed minerals, etc. 7. Study HPO (human phenotypes) for new ideas. 8. Study Google and Wikipedia for "cardiomyopathy". 9. Make a list of any disorders or diseases you may have which might affect your heart, BP, etc.. 10. Go online to the top labs and clinics and look for webinars about the heart and/or cardiomyopathy. Mayo, Johns Hopkins, Cleveland Clinic, City of Hope, MD Andersen, Boston Mass General, Univ of Helsinki Hospital, etc. 11. Lay off the salt. 12. Be certain you are Covid vaccinated. 12. Most importantly, take responsibility for your own physical, mental, spiritual, relational, emotional health. oldkarl

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Thank you so much for your reply. Everything you mentioned is reality. It’s a big job taking care of yourself.

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@janalynnnor

Yoga, walking, plant- based diet and staying optimistic with Loving Kindness Meditations as well as gardening keeps me calm and helps to reframe frustration and low points for me.

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All good. What you tell yourself is so important. For the past 16 months it’s been, one day at a time and also recognizing any part of the day that was good. Still wish Mayo would have an event group for people living with heart disease.

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@retirement75

All good. What you tell yourself is so important. For the past 16 months it’s been, one day at a time and also recognizing any part of the day that was good. Still wish Mayo would have an event group for people living with heart disease.

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Is cardiomypathy connected to amyloidosis???

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I’m not familiar with this. Have you searched for this here or check Mayo Clinic website or Cleveland Clinic.

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@oldkarl

Retirement75. Hi, friend. I am a little older than you, but many of same symptoms and dX, cardiomyopathy. 1. ALWAYS be sure your O2 reader has fresh batteries. If you don't have a reader, get one. 2. Walk as you can. 3. Keep your weight under control. 4. Eliminate stress. 5. focus on a vegetable diet. 6. Get a FULL WHOLE Genome analysis, and focus on cardiac genes. One good source is Sequencing.com. Do a search with Genome Explorer for hyper- and hypo-cardiomyopathy so you can judge your own processes, such as needed minerals, etc. 7. Study HPO (human phenotypes) for new ideas. 8. Study Google and Wikipedia for "cardiomyopathy". 9. Make a list of any disorders or diseases you may have which might affect your heart, BP, etc.. 10. Go online to the top labs and clinics and look for webinars about the heart and/or cardiomyopathy. Mayo, Johns Hopkins, Cleveland Clinic, City of Hope, MD Andersen, Boston Mass General, Univ of Helsinki Hospital, etc. 11. Lay off the salt. 12. Be certain you are Covid vaccinated. 12. Most importantly, take responsibility for your own physical, mental, spiritual, relational, emotional health. oldkarl

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What should 02 number be please?

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@jeanettef1944

What should 02 number be please?

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O2 (Oxygen Percent) should be 98% or better. Mine goes up and down, from 50 to 100%. Rather frightening, I believe. oldkarl

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@benjaminallan1945

Is cardiomypathy connected to amyloidosis???

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Hi Benjamin Hi and welcome to connect, I myself had one of the general conditions that fall under Cardiomyopathy, but I had to look up that other condition. The 2 may be related only that amyloidosis could affect any organ but according to Mayo https://www.mayoclinic.org/diseases-conditions/amyloidosis/symptoms-causes/syc-20353178
it may affect the Heart but I don't believe that having one will mean you can say you have Cardiomyopathy also. Probably best to ask a doctor that question. Have you been Diagnosed with Amyloidosis?

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I have cardiomyopathy maybe 3 years ago
I am 72
Last year I had two stents in my heart
1 year. April 2023
I go to gym for cardio
I walk every other day I change diet
I am afraid about not having enough energy
Sometimes
I hope everyone doing well
Celima

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