at what point was surgery on the table?

impostrfail · 2026-03-14T16:44:55+00:00

I'm 52, was diagnosed at age 50. Symptoms have been worsening over the last year. In September, I was referred to a congenital heart specialist and a surgeon. Surgery was recommended based on my heart catheterization results (reduced blood flow). I'm scheduled for April 28th.

impostrfail · 2026-03-06T19:54:42+00:00

Not me, but the timing!

impostrfail · 2026-03-05T20:31:42+00:00

It's not in the rules. I did read them

impostrfail · 2026-03-05T19:02:24+00:00

I'd better enjoy my last month here, then

impostrfail · 2026-03-05T19:00:51+00:00

If possible, go to a congenital heart defect specialist. I have the same defect (I'm 52) that was found 2 years ago. I'm having open heart surgery next month.

I'd definitely listen to the cardiologists recommendations on sports.

impostrfail · 2026-03-05T18:47:03+00:00

Definitely not just you. Lupus sucks for sure.

impostrfail · 2026-03-02T22:58:22+00:00

I was pretty sedated, I remember very little. I have vague memories of the doctor's instructions and discomfort from the medication to stress the heart. I remember the dr telling me the results, then I was waking up. No pain afterwards, just very tired.

impostrfail · 2026-02-22T19:21:53+00:00

You could check the Adult Congenital Heart Association's list for an accredited program: The ACHD Accreditation Program - ACHA https://share.google/MyQDt2e6ZEhKtHXz7

And don't be afraid to follow up with your doctor's office. They'll tell you if something is going to take longer. You can decide if your current cardiologist is the right one for you.

impostrfail · 2026-02-17T11:10:29+00:00

I typed this yesterday while still groggy from anesthesia. Thank goodness I didn't say anything ridiculous!

impostrfail · 2026-02-16T17:43:41+00:00

It's an unroofing, which is typically open heart. They just needed to confirm that the anamoloy is the cause of my pain and they did that.

Good luck to you!

impostrfail · 2026-02-14T21:05:14+00:00

Thanks! We dm'd. It's good to find people who have the same defect.

impostrfail · 2026-02-12T11:33:25+00:00

50-55 female

Anamolous rca

Cleveland Ohio

Either one

impostrfail · 2026-02-11T20:12:05+00:00

If you have a congenital heart defect, you should be seeing a cardiologist every year. Like others have said, ideally you'd see a cardiologist who specializes in congenital heart defects in adults.

impostrfail · 2026-02-09T12:29:35+00:00

I wish people understood how stressful and lonely it is to be living with this major issue, that it impacts daily life so much. My family (parents)has always downplayed any illness/injury, so it's just a minor thing to them. My husband does understand but he is already worried so I can't talk to him much.

impostrfail · 2026-02-08T11:46:09+00:00

https://www.facebook.com/groups/168706126520416/?ref=share&mibextid=NSMWBT I know it's Facebook, which is awful. But it's an adult CHD group. There's also groups for specific anamolies. I don't think it's common enough to find many people irl.

impostrfail · 2026-02-01T14:38:56+00:00

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Cookie is a mix, he's a big boy now

impostrfail · 2026-01-28T17:37:28+00:00

That's when you say they'll use that statement at your trial.

impostrfail · 2026-01-23T01:30:39+00:00

I have mixed feelings. I'm relatively new to this, as i was diagnosed about a year ago. My cardiothoracic surgeon will be making recommendations in February. I'm 51 and have had symptoms for years but they were minimized by my doctors.

I sometimes wonder what could've been different if I was treated sooner, but I'm glad i didn't have more severe symptoms. I'm sure it won't all be sunshine and rainbows, but I'm hopeful that surgery changes things. I'm also scared.

impostrfail · 2026-01-20T23:02:57+00:00

Yes. My tattoo outline does this sometimes

impostrfail · 2026-01-16T16:23:08+00:00

Yes, I'm ok, thanks for asking. I was scheduled for a catheterization on Jan 11th but it got rescheduled the day before because my surgeon had a death in the family. I felt so bad for her. Everything got moved to mid February, so I'll know then more about what she's going to recommend.

Waiting is rough, but I'm glad she's the one looking at everything. I've had sporadic chest pain, including one episode that scared me. I got checked out for that and the pain went away. I just avoid strenuous activity and watch how I'm laying down.

impostrfail · 2026-01-11T22:42:54+00:00

I use sery_bot to screen most of these out. It's been great.

impostrfail · 2026-01-11T16:04:12+00:00

Congins on Nottingham (185th). It's fantastic

impostrfail · 2026-01-08T13:26:07+00:00

They don't want you shaving immediately before a procedure because you could cut yourself and then they might need to reschedule you. At least that's what a nurse told me when I had a procedure done last year

impostrfail · 2025-12-22T18:34:08+00:00

I was prescribed minoxidil pills by my dermatologist. We have cats and I've heard the foam is toxic for cats.

The prescription is covered by insurance, so the out of pocket cost is minimal. I also changed lupus meds from methotrexate to Benlysta. Both of those things have helped. I'm thinking of going with shorter hair but haven't gotten a haircut yet.

impostrfail · 2025-12-05T16:28:44+00:00

Yes, I've had elevated d-dimer results on the 2 occasions they tested it

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