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Posts (10)

Tue, Jan 15 12:04pm · Chest pain > a month in Heart & Blood Health

Just wondering-
Has anyone mentioned costicondritis?
I have HOCM and my daughter had same symptoms you describe, so of course we thought was her heart also. We went through battery of tests you mentioned also. .Ended up not being the heart at all. She had pain in center of chest like you describe which in turn lead to anxiety attacks ( she was 17 at time). Anxiety attacks came on because of severe pain, which feels like you are having a heart attack. Adults experience the same sensations.
I am not trying to downplay your condition at all, and as a mother I am happy nothing was wrong with your heart. There is nothing more frustrating and frightening, when you are young and feel like your heart is racing and you experience pain.
I would ask Dr about costicondritis and also ask him to do Lyme tests- not regular ones only- ask him/her to test for babesiosis. Undiagnosed, this can lead to same symptoms.
Just some suggestions from a Mom!
Hope you figure out and that there is nothing serious going on!

Sep 23, 2018 · Stiff Heart - diastolic heart failure in Heart & Blood Health

I was thinking of using a mask next visit. I did not know they had anti-viral ones. Going to medical store to inquire. Thanks!

Sep 23, 2018 · Stiff Heart - diastolic heart failure in Heart & Blood Health

Re-birth ! Love that phrase ! My sister-in-law is a cardiac icu Nurse and told me that is what it is. A chance to live longer than you had. A chance to feel better than you have in years. She is another person that has been so supportive of all I go through, and tells me the truths, but kindly.
I am sorry you are sick. I have had a miserable run of bronchitis, strep, ear infection and conjunctivitis (swear I get it at hospital visits). I can’t seem to shake it. I was wondering if because I am so worn down all the time.
Anyway, congratulations on your anniversary and hope you feel better soon! 💐

Sep 22, 2018 · Stiff Heart - diastolic heart failure in Heart & Blood Health

Weight gain is a big thing when you can’t breathe or exercise. Some of your weight could be fluid retention from stiff heart. Did they check you for HOCM?
Are you on a diuretic?
If your doctor does not want to help you, even after losing 6 pounds, I think you need a new cardiologist. I see 8-10 heart doctors and only one made a big deal out of my weight. I sat for 2 years and gained 40 pounds. I lost 20 of it and they were all thrilled (granted 8-10 of mine was fluid) I’m still trying, but it is real important to have doctors who support you, not put extra pressure on you. Dealing with heart issues is enough pressure.
That is just my opinion.

Sep 22, 2018 · Stiff Heart - diastolic heart failure in Heart & Blood Health

I will definitely check out these and keep in touch.
I am in New York and deal with Columbia Presbyterian.
I have heard many wonderful things and then heard about
End of life care, trading one major problem for another, etc…
It causes quite the roller coaster with your emotions. I am in a support group in upstate NY which helps.
All the surgeons that have operated on me smile and say, you got this, no problem. They know I am an easy patient and will do whatever necessary. It’s hard because I want the truth, but there is a fine line between honesty and brutally honest when first faced with heart transplant ( along with waiting for new guidelines that will help me). I am not close to any Mayo Clinic, nor do I have any family by any of them, but am interested in any info I can get.
Thank you !

Sep 21, 2018 · Stiff Heart - diastolic heart failure in Heart & Blood Health

I have Diastolic heart failure as a result of HOCM!
I have been through many medications and surgeries in last few years to address issues caused by HOCM. As a result I am having heart failure and am being put on transplant list, which does not come without its own major drawbacks.
It started out with little Arrhythmias and just blossomed from there over the last 10 years.
Medications played a big part in keeping me healthy and functioning in the meantime.
Having a cardiologist and pulmonologist that are good and work together is a blessing!

Jun 16, 2018 · HCM CARE tips - What do you wish you had known for after surgery? in Hypertrophic Cardiomyopathy (HCM)

The procedure and how you felt after is a good description. I think all the pointers you gave for preparing were great. I am 2 years post-op (septal myectomy) but did not have a good experience because of further surgeries needed. I am now at the point of getting on heart transplant list unfortunately, but still think if I’m lucky enough to receive a new heart, I will be following surgery the same ways I did in past and as you described above.