Does any one have HOCM & Systemic Amyloidosis?

Posted by soonerfan @soonerfan, Mar 23 9:41am

HOCM diagnosis in May 2023. Was put on Camzyos for 6 mos. My symptoms continued to get worse: weight loss, dizziness, light headed, passing out, tingling feet & hands.
I use a walker since I’m so unstable. My husband pushes me in a wheelchair when we to dr appts so I won’t fall.
Went to Mayo Clinic in Rochester for a week.
Had more tests than my local Heart Institute ever mentioned. Was diagnosed with systemic Amyloidosis. See a hematologist/oncologist 3/29/24. Dr from Mayo is ending her notes and recommends to the hematologist here in Oklahoma. Had the Covid shot. I know there’s some talk about this being linked.
Anyone out there have similar issues? Chemo is in my future. Stem Cell Transplant has been mentioned after wards.
I look at my portal, I have a hard time figuring it all out, then try not to freak out! I try not to google it. Thank you for letting me share.

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

Debra, Volunteer Mentor | @karukgirl | Apr 10 6:07pm

Hello @soonerfan,
How did your appointment on the 29th of March turn out? Were you able to get any more information? Do they still think you have both HOCM and Amyloidosis together but separate from each other?
I'm glad you feel comfortable to share here on Connect. I did not see anyone respond to your questions, so that makes me think you are a pretty special case. Even though I bet you wish you were quite so 'special'.
Do yo think they are still trying to figure out what you really have, or has the final diagnosis been made?
How are you doing? Are you getting around better, same or worse?

soonerfan | @soonerfan | Apr 10 7:50pm

She confirmed the Mayo diagnosis.
I got my port last Friday. I start treatments This Friday. I will have them weekly for 4 months.
I feel that with every day ( and getting that Camzyos out of my body) I am getting stronger, I still have dizzy days but less. My blood pressure improved. I still am using my walker, kinda afraid not to.
I guess I am a special case. Thank you for responding. Hope you have a great rest of your day.

Debra, Volunteer Mentor | @karukgirl | Apr 11 9:35am

In reply to @soonerfan "She confirmed the Mayo diagnosis. I got my port last Friday. I start treatments This Friday...." + (show)

Oh gosh! I hope this helps you get your life back to a place you feel normal, or close to it again. You were dealt a double whammy!
I'll be praying for you on Friday. It must feel surreal being on this journey. One you didn't expect to be on. You sound like a strong person with a great attitude, and that will help you navigate these challenges. Do you have a favorite activity or hobby you can lean on to help you as you go through this?

soonerfan | @soonerfan | Apr 12 8:40am

I like to read romance novels. LOL they are like hallmark movies they have a happy ending😊 Thought about trying to learn to crochet. My mom is vary talented InThe craft/sewing area. I could always make a chain! lol I used to say I could make a chain from here to California but cannot connect it. Might learn to connect that chain!
Thank you for the prayers. My sister-in-law sent this to me today. I really like it: “the come back is always greater than the setback”

Debra, Volunteer Mentor | @karukgirl | Apr 12 10:53am

In reply to @soonerfan "I like to read romance novels. LOL they are like hallmark movies they have a happy..." + (show)

I can picture the long crochet chain! That's funny! It actually may be relaxing and something you can do that will help you focus elsewhere and who knows...maybe everyone on your Christmas list is getting a crochet drink coaster or throw this year 🙂
Romance novels are like junk food for the brain. They are easy to get lost in and who doesn't want a happy ending? Prayers for today and going forward. I like your sister-in-laws saying. So true.

soonerfan | @soonerfan | Apr 12 11:28am

Thank you for your kind words

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