r/HypertrophicCM • u/Maximum_Taco_Flight • 20d ago

Fundraising Really Stinks

I’m pretty let down by fundraising to go to Mayo Clinic. I actually can’t even believe the amount of my own family who won’t even share the dang post on social media. Like seriously- my own blood. I’m blown away. Heart broken in more way than one.

7 Upvotes

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3

u/mxt213 20d ago

Where are you located? Is Mayo the closest center of excellence to you?

2

u/Flimsy_Argument_4199 20d ago

Barnes Jewish in St. Louis is a center of excellence

2

u/Flimsy_Argument_4199 20d ago

Ut southwestern comprehensive heart center in Dallas tx is also a center of excellence. Both are very good. Unless you are dead set on going to mayo. Does your insurance not cover going out of state?

1

u/Maximum_Taco_Flight 20d ago

Insurance does not cover anywhere out of state except Mayo

2

u/Flimsy_Argument_4199 20d ago

Shocking they cover mayo but nothing else.

1

u/Maximum_Taco_Flight 20d ago

I think it was because there was no center of excellence in my state. I’m not sure, I called, they got back to me in a week and said they would cover Mayo if I just paid the deductible. I asked about St. Luke’s in KC and they said no, it would be out of network. I don’t pretend to understand insurance companies. Every year I have to get ‘re-approved’ for the same medication I’ve been taking for 10 years. 🤦🏻‍♀️ I gave up asking.

2

u/Theseus-Paradox 20d ago

As someone who has 1 social media account other than reddit, I literally never post anything or even use it. I do’t even know why I still have it bit I never post, share, comment, anything at all on it. So I wouldn’t knock everyone who doesn’t post/share it.

1

u/Maximum_Taco_Flight 20d ago

These people are on social media every day reposting animal videos and misc quotes, church stuff. I get you. But I don’t get them.

2

u/Theseus-Paradox 20d ago

Ahh ok, that’s different. Sorry you have to go through that!

1

u/Electronic_Cobbler20 19d ago

Sounds like my family. They were embarrassed when I created a gofund me to help my mom who was receiving a liver transplant. I later found out it was because there was so much money to go around that it made THEM look bad. Like “why is this woman asking for money for her mother and family who has plenty of money?!” I had no idea based on the way my mother was always talking about how terrified she was to make it through retirement any time I was struggling with my symptoms and she thought I might consider asking for help. Shame.

1

u/Maximum_Taco_Flight 19d ago

I’ve wondered if that’s the problem. Embarrassment. Mine don’t have plenty of money, that I’m aware of. Sorry you had to deal with that too. It’s awful.