Experience with aortic aneurysm treatment at Duke University?

Posted by angiecabinfever1 @angiecabinfever1, Sep 28 5:23pm

Has anyone had any healthcare at Duke University? Surgeries?

Interested in more discussions like this? Go to the Aortic Aneurysms Support Group.

Profile picture for angiecabinfever1 @angiecabinfever1

@lauriewelsh7
Good afternoon! I’m sorry I have a lot of questions. Did you know right off you were seeing the Nurse Practitioner or you didn’t know until you went ?
Did she ever say you shouldn’t have made the appointment with them ? My cardiologist acts like I shouldn’t be seen by an aorta specialist or surgeon? My aorta root is 4.3 and aorta is 4.0. I have said I want as much information from anyone that can help me be more informed of everything concerning potential complications or surgery. I live 3 and half hrs away from Duke. I just don’t want drs to understand the concern and not be so passive about it. Like if it was them or one of their family members going through it. I don’t have high blood pressure but take medication metoprolol for heart palpation's. I was borderline for high cholesterol but no one put me on anything.. but recently had a blood test taken called Lipoprotein and dr called said mine was very high! 198 he wants to start me on statins even though 2 yrs ago I had a 0 Calcium score. He knows I want to live as long as I possible can. This lipoprotein test is hereditary and researching it says no diet and exercise will help bring the number down . It says our parents determine our number. Which is terrible. I’m definitely more aware of so much more now and still nervous about having heart problems and living so far away from a good hospital. I’m about 30 min from Bristol Tn/va
Thank you for listening !!
Much Appreciated sending Prayers to you !!
Angie

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@angiecabinfever1 Good morning, Angie.
You’re getting lots of good information. I am not a provider (a retired nurse) however, addressing everything that may increase your aneurysm is the way to go. No smoking, healthy weight, Mediterranean diet, maintaining a normal blood pressure, healthy exercise without heavy weight lifting or inversions and getting cholesterol levels normalized are great things to do. There’s only so much we can do about diet and exercise, heredity plays a role too so statins - to me - are a reasonable option.
I live in Prescott, Arizona and if I needed surgery it would be in Phoenix - a 2 hour drive. This is where the close monitoring of our aneurysm is important. Surgery would be planned because an emergent need is not optimal for our care.

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Profile picture for angiecabinfever1 @angiecabinfever1

@lauriewelsh7
Good morning! I’m so glad we found the right doctor for our hearts. I would like to keep in touch since we are so similar in case and sharing the same drs!
Thank you again for sharing your experiences. Sending love and prayers to you and your family!!
Angie

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@angiecabinfever1

Good morning! I hope we found the right doctor at Duke. It sounds promising. I would definitely like to stay in touch. I'm also interesting in your thoughts when you go to the Cleveland Clinic. That's not off the table for me if I do feel they are the better option if I do need surgery in the future. I prefer to stay closer to home if possible though.
Sending love & prayers to you & your family as well!
Laurie

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Profile picture for christinedwolf @christinedwolf

@angiecabinfever1 Good morning, Angie.
You’re getting lots of good information. I am not a provider (a retired nurse) however, addressing everything that may increase your aneurysm is the way to go. No smoking, healthy weight, Mediterranean diet, maintaining a normal blood pressure, healthy exercise without heavy weight lifting or inversions and getting cholesterol levels normalized are great things to do. There’s only so much we can do about diet and exercise, heredity plays a role too so statins - to me - are a reasonable option.
I live in Prescott, Arizona and if I needed surgery it would be in Phoenix - a 2 hour drive. This is where the close monitoring of our aneurysm is important. Surgery would be planned because an emergent need is not optimal for our care.

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@christinedwolf
Good evening.
I have taken statins until now . I have had a 0 calcium score. 2 yrs ago and cholesterol been ok. And recently dr tested my lipoprotein and it was high 198 heart dr called me and said it was hereditary and. Nothing I can do to change it. But decided to put me on statins. It puts me at high risk for heart attack and stroke. He knows I am worried about my aorta so he said I need to be on this med and need to walk and eat better. It definitely stresses me more now. But I am trying to eat better and move more.
Thank you for your advice!
Angie

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Hi Angie,
Keep up the good work! I remind myself to breathe when I get too consumed with all this. It’s a double edged sword to know about our aneurysm. It’s good that we know and it’s a burden at the same time.
🙂
Chris

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Profile picture for lauriewelsh7 @lauriewelsh7

@angiecabinfever1

Good morning! I hope we found the right doctor at Duke. It sounds promising. I would definitely like to stay in touch. I'm also interesting in your thoughts when you go to the Cleveland Clinic. That's not off the table for me if I do feel they are the better option if I do need surgery in the future. I prefer to stay closer to home if possible though.
Sending love & prayers to you & your family as well!
Laurie

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@lauriewelsh7 The key is going where this type of surgery is done frequently.

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Profile picture for christinedwolf @christinedwolf

@lauriewelsh7 The key is going where this type of surgery is done frequently.

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@christinedwolf

Hi Christine, thank you for reaching out. That’s why I’m also considering Cleveland Clinic. Angie has an appointment there in Dec & will update us on her opinion at that hospital.

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Profile picture for lauriewelsh7 @lauriewelsh7

@christinedwolf

Hi Christine, thank you for reaching out. That’s why I’m also considering Cleveland Clinic. Angie has an appointment there in Dec & will update us on her opinion at that hospital.

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@lauriewelsh7
I have been praying where to go!
And if I lived closer north I think I would still be keeping my appointment in Cleveland. But I’m hoping I will have a good outcome with the advice they gave you as well. And have a peace of mind that Duke will be the best option because of the distance to Cleveland Clinc. But if I keep them both I will definitely tell everyone my opinion. Much love and prayers to you all!
Angie 😊

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Profile picture for rlhix @rlhix

I think Dr. Jack Haney is back at Duke University. He is my surgeon from Mayo Clinic Jacksonville. I would recommend him without hesitation.

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@rlhix

I was mistaken about Dr. Jack Haney going back to Duke. He went to Cleveland Clinic in Cleveland Ohio.
https://providers.clevelandclinic.org/provider/john-haney/7213544

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Profile picture for angiecabinfever1 @angiecabinfever1

@christinedwolf
Good evening.
I have taken statins until now . I have had a 0 calcium score. 2 yrs ago and cholesterol been ok. And recently dr tested my lipoprotein and it was high 198 heart dr called me and said it was hereditary and. Nothing I can do to change it. But decided to put me on statins. It puts me at high risk for heart attack and stroke. He knows I am worried about my aorta so he said I need to be on this med and need to walk and eat better. It definitely stresses me more now. But I am trying to eat better and move more.
Thank you for your advice!
Angie

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@angiecabinfever1 if your lipoprotien 198 is what they call LP (a) then the drug Repatha can help with the hereditary part. i believe the cardiologist would know this already. so maybe you are not talking about LP(a). otherwise, the drug is fantastic. good luck)

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Profile picture for lewee @lewee

@angiecabinfever1 if your lipoprotien 198 is what they call LP (a) then the drug Repatha can help with the hereditary part. i believe the cardiologist would know this already. so maybe you are not talking about LP(a). otherwise, the drug is fantastic. good luck)

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@lewee
Good morning! Yes my lipoprotein is 198. The only thing he put me on was Lipitor which is a statin . I have seen that advertised on tv. Maybe I should ask.. he said it was hereditary so there was anything to change it. Thank you for telling me !
Angie

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