← Return to HCM-ers: Introduce yourself or just say hi

Discussion
Comment receiving replies
@choochoo

My husband few this disease and was just diagnosed a few months ago. He is 67 and doc doesn't think it is very bad. His symptoms show he is having problems but tests show it's not bad. We are very frustrated. Our doc is very good.

Jump to this post


Replies to "My husband few this disease and was just diagnosed a few months ago. He is 67..."

I am 57. My diagnoses did not look that bad either but my symptoms have continued to escalate and I am now on the heart transplant list.
The severity of the symptoms is what matters.

Hello @choochoo,

Welcome to Connect. Thanks for joining; I'm so glad to see that you've connected with some of the members in this group.
Would you share a few more details about your husband? What symptoms is he experiencing?

Thank you so much for following up and sharing, @77dhowell. I'd encourage you to take a look at the Transplant group too, on Connect: https://connect.mayoclinic.org/group/transplants/ where you will find a few discussions that might interest you.
How are you coping and managing your symptoms at present?

For about 3 yrs he has been dizzy and last 6 months fainting. Headaches, dizzeness walking a short distance and very tired in the afternoon. Because the tests they have run don't look bad enough to do surgery they think his symptoms are basiclly in his head. We don't agree. Meet on Monday with PA.

I had that problem since 1996. I am now on oxygen waiting on a heart transplant. This is based on my symptoms not tests.
At one point I thought I might die before anyone believed me.
The final test that showed a problem was a test where they had me on my back, pedaling a bike while they measured the pressure in my heart. It went up 300% over maximum with exercise.
Every other test for 20 plus years could did not show the level of physical difficulty I have was actually experiencing. Good luck. Keep going until you find the help you need! Your life depends on it.