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Nov 21, 2019 · Terrified: Soon to have open heart surgery, so many questions in Heart & Blood Health

Hello…I am schedule for open heart Tues. I am beyond terrified. I as a nurse, know that complications are rare and the surgeons keep telling me that small 1% chance of risk…. but I am scared. I fly to Rochester tonight and it’s going to take all my strength to board that flight with my husband and kids. I am not a cardiac nurse- mostly neuro- so I reached out to a few friends for advice but really best advice comes from those who have had surgery, felt the fears, and overcome the hurdles. I hope that I can help in the future once I do this! I want to really help those going through this. My surgery is from congenital heart disease- so it’s a day to day issue. Best of luck to everyone for a fast recovery! I hope you get some answers and advice!!

Aug 24, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

I was found to have a rare congenital heart condition- Mayo is one of the few places in the country who has dealt with this condition.

Aug 24, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

I am not sure- I am scheduled at Rochester on Sept 9th. I am meeting the surgeon and depending on if or when i need surgery will probably determine when I go to Jacksonville… I tried to go there first but was told for the surgery I would need I needed to go to Rochester… thank you for all the great information though!! I feel so overwhelmed right now the littlest bit of details and information offered gives me some comfort and emotional ease!

Aug 23, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

Hi! I am visiting Rochester. Hoping maybe to have follow up care at Jacksonville, I live in Pensacola so that would be much more easier.

Aug 10, 2019 · Your Tips on How to Get Off to the Best Start with a New Specialist in Visiting Mayo Clinic

This is great information! I am coming to Mayo for the first time in A few weeks— this is really helpful!!!!

Jul 31, 2019 · Kommerell’s Diverticulum with aberrant right subclavian artery in Heart & Blood Health

@kanaazpereira, thank you so much for the response and taking the time for the articles. I have read them all and they were very helpful, they were actually ones I had not found and read yet. We reached out to Mayo immediately when we received the MRI report, primarily because my cardiologist has never dealt with this before. I am very assured though so far with what I have seen and heard from everyone at Mayo. I am so glad I discovered this forum on the Mayo website, this is a really great way to help support and share!

Jul 31, 2019 · Kommerell’s Diverticulum with aberrant right subclavian artery in Heart & Blood Health

@jbell22 thank you for answering! I am so sorry to hear about all of your issues first of all. I have known since childhood I had a bicuspid aortic valve, in the past 6 mos. I have had a spike in my diastolic pressures, my cardiologist started me on meds but my echo really didn’t look that bad so he just wanted to make sure there was nothing else causing the pressure other than the stenosis from the valve- so I had a cardiac MRI. I live in Pensacola, which is one of the smaller cities in Florida, my cardiologist and the surgeons here saw the scan and never seen this before, so really they couldn’t or wouldn’t speculate treatment or even really confirm diagnosis yet, in fact I have heard many different measurements of my KD from them so I am not even sure how big it is! Our hospital here has a affiliation with Mayo, so we reached out immediately. It’s only been a month since we did that so we are still working with coordinators to schedule a visit, I have found it’s not quick process. My husband is a physician, so we have tried to find some answers through his colleagues as well, but honestly I have not heard really anything from any physician other than I need to go to Mayo. My MRI result reads left aortic arch with right aberrant subclavian with KD of 3.5cm, but like I said the docs here aren’t agreeing in measurements, most have never read a scan with this before either. I have no symptoms- so I feel very fortunate. It sounds like your issue is very complicated and painful. I will just be glad to sit down with a dr who can confidently tell me what is going on and answer my questions- the unknowns are starting to cause a little anxiety. I am really apprehensive surgery. Did you have all of your procedures and surgeries at Mayo? How has your experiences there been? The coordinator has been working for over a month and I still do not have an appointment, but I also feel like I am not an emergent case so I am trying to be patient . Thank you for discussing this with me!!!

Jul 30, 2019 · Kommerell’s Diverticulum with aberrant right subclavian artery in Heart & Blood Health

I was recently found I have this condition after a Cardiac MRI to look at my bicuspid aortic valve. I am working with a coordinator to come to Mayo in Rochester to explore treatment plans. Is there anyone else with this diagnosis? I am an RN but am having so much trouble finding much research on this- it would be nice to hear from someone with a personal experience.