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lisagold70 (@lisagold70)

Scimitar Syndrome: Anyone else have this?

Heart & Blood Health | Last Active: Sep 1, 2021 | Replies (11)

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@hopeful33250

How wonderful that you persisted and found an answer, @lisagold70. I'm glad that you found a good surgeon at Mayo Clinic in Phoenix. I get the impression that you had to ask for the heart MRI. Is that correct? What made you ask for that?

If you will share more, what was different in the Mayo surgery that makes you think you will not have to have more open-heart surgeries? Also, are you currently taking medications for heart failure?

I hope that your SOB and fatigue are resolved now. Are you able to exercise without symptoms?

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Replies to "How wonderful that you persisted and found an answer, @lisagold70. I'm glad that you found a..."

Yes I did have to ask for the MRI, I figured all other tests preformed, showed nothing, which I didn't mention before I had numerous Chest CT w/contrast prior to diagnosis because ER Dr's thought and kept diagnosing me with pneumonia even though My lungs where clear, but they couldn't explain my SOB. So no test showed anything substantial or heart related and I just knew in my gut there was something wrong and needed answers. Dr. Derani from Rochester was a life saver! There's not a day that doesn't go by that I don't think I'll need another surgery, however at this point I'm happy this has been the longest I haven't needed one! I really think the experience and confidence in Dr. Derani made me believe and I'm hopeful I won't need another surgery but if I do I feel like I'm in the right place in the best hands possible. I am followed by the wonderful team here in phx for my congenital heart issue. I'm also monitored by the heart failure/PH team. Yes I ended up also getting diagnosed with pulmonary arterial hypertension in 2019 due to my congenital heart defect. I am currently taking 2 medications for PH, 2 medications for heart, 1 medication for acid reflux, 1 medication for heart failure. I am able to exercise almost daily, although I do experience some SOB and sleep with O2 I am able to workout. I have attended cardiac rehab and pulmonary rehab at the Mayo so I know my limits. I'm very blessed to be surrounded by such knowledgeable Doctors and staff at the Mayo

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