Connect
← Return to Just Diagnosed with HCOM
Discussion
Comment receiving replies
Wow, @kerryj2025,
What a crazy time this must be for you! I am so glad you found Mayo Clinic Connect.
I don't know where to start, you have so much going on.
I'd like to introduce you to one of our amazing Mentors, @gingerw .
Not only is she amazing, but she also lives with multiple scary conditions and is able to find balance in life. If you get a chance, read some of her posts. You will be inspired!
It's no wonder you have sat and wondered how to live with all these things.
There is a lot of coordination that needs to happen with all your different treating physicians, that's for certain. Each one needs to know what the other is doing to ensure you are getting not only the best care, but the right care.
It's easy to say just take it one day at a time, but when your day includes the list you have? That's just impossible to comprehend. Yet here you are! And I am so glad you are here.
I would assume (which we know what that means) that the conditions need to be prioritized and treated accordingly. Which one should be treated first? I would assume (there I go again!) that your FP is at the helm and directing all this.
It must feel overwhelming. Like a huge mountain you must climb.
Do you have a hobby you love that you can do?
Are you able to get outside in the fresh air and sunshine?
Do you have a faith background you can seek comfort from?
I'd also like to introduce you to another equally amazing Mentor, @loribmt. Her journey will inspire you. Her humor and strength to face tough, tough medical challenges is nothing short of amazing, and worthy of a Hallmark movie.
Here is a link to the Mayo Clinic hypertrophic cardiomyopathy. It's good to get to know your new heart condition since it's not going away!
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Do you know what the next steps are for you?
Have you had time to even think about a second opinion?
It may help going forward to be certain there is confirmation and clarity as you lug your burden along this new and wild journey.
Replies to "Wow, @kerryj2025, What a crazy time this must be for you! I am so glad you..."
Connect
It has been a pretty busy past 3 weeks. I appreciate the information in your message 😊. I saw the cardiologist, my sleep apnea Dr, the ENT, pulmonologist and had a heart cath on Monday! My daughter, who had a brain tumor when she was 6 years old, has also had several appointments.. she’s a 33 year survivor which impresses many doctors. I’m her primary care giver. Finding a little extra time can be challenging sometimes. We seem to take turns having medical situations lol. Anyway, the results of the cath determined I need a septal myectomy (sp?) which is what Mayo had determined last April. I meet with the cardiac surgeon Oct 2nd. I have a dozen appointments between now and my cancer recheck at Mayo Nov 12. It’s like having a full time job but you don’t get paid… you pay to do it!!! Soooo, actually, I have 2 full time jobs LOL 😂. Fortunately, after my daughter was in a coma for 8 days in 2022, her dad has started to step up. He stepped up more after all my diagnoses this last spring.
So long story with a short answer… my kids hate it when I do that…. Hmmm. A little momma payback for the teenage years 😂. The heart surgery needs to happen, but it won’t be until they see if the cancer has spread or is behaving itself for now!