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Superbob

Steely Resolve!
Supporting Member
Joined
Apr 21, 2005
Messages
8,481
Location
Coastal Carolina
I've had a consultation with one surgeon recommended by my cardiologist, but now that we are waiting for further evidence of my ascending aortic aneurysm this fall (and likely surgery if there is further growth from current 5.3 cm), I am thinking there is no reason I shouldn't shop around for best possible option in my region of the country (the Carolinas).

I find Duke University hospital and its heart surgeons highly rated nationally (U.S. News & World Report). Are there other ratings and info I should look at? Anyone been a heart patient there and recommend a particular doctor or doctors?

Thanks for any info/thoughts.
 
I'm in somewhat the same boat. I went to Duke because of ratings, but I just didn't get a good feeling. Some things were fine and others were not. I switched to Wake Forest Baptist, but have only had 1 appointment so far. It probably comes down to the cardiologist and the surgeon more than the facility.

I don't know where you are in Carolina, but Norfolk Sentara is also highly rated. Unfortunately they don't participate in the trial I am trying to get into, or that's probably where I would go.
 
Thanks Rich. I am in South Carolina and my cardio recommended a surgeon at UNC/Chapel Hill. I've been to one visit there and pretty impressed, so that's probably where I will wind up going. Just beset by restlessness and wandering mind while waiting, I guess.
 
Thanks very much JWalters. Appreciate that info. Right now, I am probably going with UNC but since I have some waiting time, thought I would check into my options. Wife and I lived in Richmond for a long time so might well look into VCU. She had lifesaving surgery for brain aneurysm at MCV/VCU about 20 years ago.
 
I will say this, if you can afford to go to Cleveland do it , a truly amazing experience and great people top to bottom. I went there 5 weeks ago for my AVR and ascending aneurysm and insurance covered all the medical as in-network and I just had to cover travel and lodging. They are #1 Cardiac hospital 23 years in a row for a reason. There are 2 hotels next to the hospital and a brand new Residence Inn opening a few blocks away. I can;t praise the hospital or its people enough. Yes is was a bit scary to travel 600 miles and recover in a strange city, but well worth it and I would do it again in a second.
 
Appreciate that info and recommendation. Have thought about going to one of the top-ranked facilities, and Cleveland has been tops for a long time. Do they have any lodging discount deals for patients and patients' families? And how long a hospital stay did you have, and did you go to a rehab center afterward? How did you travel home afterwards and how did that go?

I am 77 and my prospective UNC/Chapel Hill surgeon said I'd likely spend 5-7 days in hospital and then he would probably have me go to a rehab/care facility for a while. It's about 250 miles from home so travel and cost for one or two family members to stay nearby are considerations.

This would be my second OHS. First was in 2005 for VR plus AAA. Have a Medtronic combined root/valve. In 2009, (10 years ago) local cardio alarm bells rang when CT showed 5.1 aortic diameter, but original surgeon convinced them that was pretty much normal for me.(I am a pretty hefty guy.) In March this year, a new CT put it at 5.3 -- not a huge increase over a decade. I had an initial consultation at UNC and the surgeon who looked at a CD of the CT said he measured 5.5. So we were on verge of pre-op testing when I proposed we do follow-up imaging in 3 to 6 months to try to see if there really is a growth trend. So that's where it stands now. Surgery still probable but I'm hoping it stabilizes at 5.3, or even back at 5.1 in case it was a measurement error.
 
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Appreciate that info and recommendation. Have thought about going to one of the top-ranked facilities, and Cleveland has been tops for a long time. Do they have any lodging discount deals for patients and patients' families? And how long a hospital stay did you have, and did you go to a rehab center afterward? How did you travel home afterwards and how did that go?

I am 77 and my prospective UNC/Chapel Hill surgeon said I'd likely spend 5-7 days in hospital and then he would probably have me go to a rehab/care facility for a while. It's about 250 miles from home so travel and cost for one or two family members to stay nearby are considerations.

This would be my second OHR. First was in 2005 for VR plus AAA. Have a Medtronic combined root/valve. In 2009, (10 years ago) local cardio alarm bells rang when CT showed 5.1 aortic diameter, but original surgeon convinced them that was pretty much normal for me.(I am a pretty hefty guy.) In March this year, a new CT put it at 5.3 -- not a huge increase over a decade. I had an initial consultation at UNC and the surgeon who looked at a CD of the CT said he measured 5.5. So we were on verge of pre-op testing when I proposed we do follow-up imaging in 3 to 6 months to try to see if there really is a growth trend. So that's where it stands now. Surgery still probable but I'm hoping it stabilizes at 5.3, or even back at 5.1 in case it was a measurement error.

They have discounts with some local hotel and once you talk to them they will send you all sorts of info about the area, lodging, etc. When my mom decided to fly in I actually called the hotel I was booked at and talked to Sales and explained my situation and they gave her an amazing rate.

If you call their Heart Resource Center at 866-289-6911 they will point you in correct direction. I can;t say enough about Dr. Unai who did amazing work on me, the next would be Dr. Roselli who does nothing but AVR and Aneurysm repairs.

You can chat live with them to:
https://livechat.clevelandclinic.or...5.1496077620.1559068105-1403942267.1547850119
The nice thing is they will explain what they want from you and you can send them your records and they will provide an opinion. That usually takes 2-3 weeks. I actually have Dr. Unai and Dr. Roselli review my records and images. The place is just world class!
 
Twenty years or so ago, my father had an abdominal aneurysm and Duke saved his life. He should have died, but he got enough warning with a backache, an instant ride to the hospital and the right surgeon hadn't yet gone home. We were pleased with their care, but that was many years ago.
 
Appreciate that info and recommendation. Have thought about going to one of the top-ranked facilities, and Cleveland has been tops for a long time. Do they have any lodging discount deals for patients and patients' families? And how long a hospital stay did you have, and did you go to a rehab center afterward? How did you travel home afterwards and how did that go?

I am 77 and my prospective UNC/Chapel Hill surgeon said I'd likely spend 5-7 days in hospital and then he would probably have me go to a rehab/care facility for a while. It's about 250 miles from home so travel and cost for one or two family members to stay nearby are considerations.

This would be my second OHR. First was in 2005 for VR plus AAA. Have a Medtronic combined root/valve. In 2009, (10 years ago) local cardio alarm bells rang when CT showed 5.1 aortic diameter, but original surgeon convinced them that was pretty much normal for me.(I am a pretty hefty guy.) In March this year, a new CT put it at 5.3 -- not a huge increase over a decade. I had an initial consultation at UNC and the surgeon who looked at a CD of the CT said he measured 5.5. So we were on verge of pre-op testing when I proposed we do follow-up imaging in 3 to 6 months to try to see if there really is a growth trend. So that's where it stands now. Surgery still probable but I'm hoping it stabilizes at 5.3, or even back at 5.1 in case it was a measurement error.


Sorry. Missed some of your questions.

I was in hospital 7 days, I was supposed to be out in 4, but my INR would not budge for days so they had me on a Heparin drip. I had planned on up to 7 days so my surgery was on a Thursday and I was out following Thursday. I had booked my return flight for Sunday so had plenty of time. I arrived the Sunday before as they had 3 days or pre appointments set up, day 1 was blood, x-ray, pulmonary test, echo of heart and then echo or carotid artery. Day 2 was cath, day 3 was anesthesia clearance meeting and then meeting with surgeon and admittance paperwork. Those 3 days were outpatient. Day 4 was 5:30am check in for surgery.


Overall I was in Cleveland for 15 nights and stayed at Residence Inn Downtown, ran me about $2600 for hotel. We ditched car after day 1 as hotel wanted $36 a day for parking and hospital was $10. Cost us less than $40 a day in Lyft and Uber.

As for cardiac rehab they tell you to get your cardiologist to arrange that at 6 weeks, which will be 10 more days for me. Also I am skeptical of rehab as once they explain what I need to do I can do most of it in my basement as I have some exercise gear. I don’t plan on going to them more than once or twice.

As for travel home, we flew. They ask that you wear compression socks, which my wife ordered me a few pair ahead of time as the hospital ones are bright white. We ordered wheelchair on both ends which helped, but don’t get me started on the Atlanta airport.

I am 58 healthy and up to date of surgery was exercising and eating well. Day after surgery I was packing in the protein drinks to give my body energy to heal. As soon as they got me up walking I was walking as much as possible. Some days we did 1.5-1.75 miles in laps around the halls. I was determined to minimize pain meds.

24 hours after surgery in ICU when my wife showed up I was “where is my phone I need to catch up on work emails” and 2 days later had my laptop out working 6 hours a day from the room and on con calls. I believe that helped as I was focused rather than dwelling on my recovery.

I can’t am writing up a mini-blog to share my story, but realize I am not the norm and that many have tougher time. What I hope is to educate people on my choices and how I got there as well as my r covers which I am fortunate has been great. At t weeks my biggest concern is upper sternum still feels more sensitive than I expect and I heard a pop that I am not sure was rib or sternum.

The good news is I jumped right on Cleveland Clinic nurse chat mentioned it and they suggested I go get it looked at to be safe. They have a 24 hour nurse line and then chat as well during business hours.
 
I will say this, if you can afford to go to Cleveland do it , a truly amazing experience and great people top to bottom. I went there 5 weeks ago for my AVR and ascending aneurysm and insurance covered all the medical as in-network and I just had to cover travel and lodging. They are #1 Cardiac hospital 23 years in a row for a reason. There are 2 hotels next to the hospital and a brand new Residence Inn opening a few blocks away. I can;t praise the hospital or its people enough. Yes is was a bit scary to travel 600 miles and recover in a strange city, but well worth it and I would do it again in a second.
Hi Keith,

I'm in San Diego and Cleveland is my choice, as well, for eventual ascending aorta/BV. I've gone back and forth with Dr. Svensson several times. I was connected with him through one of my consulting cardiologists, who used to be at CC. Dr. Svensson's requirement is that I make a trip there for a consultation well before surgery. He would not do a long-distance review, with me showing up just prior for the various battery of tests/preparations. I'm curious how you decided on Dr. Unai, whose caring comes through very loudly in his video on their side. I've also been impressed with everything I've read/seen on Dr. Roselli. Like you, my goal is to have someone whose main focus is aorta-related surgery.
 
24 hours after surgery in ICU when my wife showed up I was “where is my phone I need to catch up on work emails” and 2 days later had my laptop out working 6 hours a day from the room and on con calls. I believe that helped as I was focused rather than dwelling on my recovery.

I like to think that would be me. I'm 66, now on the 3-month scan-plan and have my own business. I'm asymptomatic and I've been living with the BAV issue for 40+ years and the known aneurysm for at least 5. The aneurysm is closing in on 5, which is CC's magic size, but we are now keeping a very close eye on my left ventricle, which for the first time has now started flashing yellow. I'm considered in good health, eat well and exercise regularly. I now consider everything I do, including core strengthening, as a form of pre-hab. My mind is at peace with the eventual surgery; lord knows, I've had a long time to think about it. This forum and others have helped immensely. My biggest concerns are removing drainage tubes, brain fog and the prospects of some kind of complication. But I've come to the conclusion from watching a few friends who have gone through some serious surgical procedures, including heart, that attitudes played a huge role in their recoveries. Easier said than done, but your quick grab of the laptop is inspirational and I'm glad to hear.
 
Well I live in Greensboro ,NC and had my surgery at Duke after some shopping around. I can't imagine a better outcome. When it came down to it I went with the highest rated...though I gotta say everyone I talked to I think was a pro at all the providers.

Dr. Jeffry Gaca did the surgery and I decided to stay with Duke cardiologist Dr. Wang. Been a total home run for me. Going on 4 years with bovine and Dr. Wang did total echo last week and said he thought it could go 20 years.

I think the best news is in the 4 years since when I go to my GP or random doc in the box they are amazed. They all say the valve sounds flawless. It's an actual unsolicited comment I get every time.
 
Hi Keith,

I'm in San Diego and Cleveland is my choice, as well, for eventual ascending aorta/BV. I've gone back and forth with Dr. Svensson several times. I was connected with him through one of my consulting cardiologists, who used to be at CC. Dr. Svensson's requirement is that I make a trip there for a consultation well before surgery. He would not do a long-distance review, with me showing up just prior for the various battery of tests/preparations. I'm curious how you decided on Dr. Unai, whose caring comes through very loudly in his video on their side. I've also been impressed with everything I've read/seen on Dr. Roselli. Like you, my goal is to have someone whose main focus is aorta-related surgery.

They assigned me Dr. Unai and when I reviewed his record and video I was impressed. I then researched their other doctors and was thinking about Roselli as he does only this surgery. While Roselli seems like a great guy in some of his videos (he has a few floating around) he comes across a little more arrogant like most seasoned cardiologists and cardiac surgeons do. Dr. Unai was phenomenal in person and speaking to the folks at the hospital he is doing amazing things. Also he specializes in heart/lung transplants and complex re-operations so I figured my work would be a walk in the park for him. Even the nurses joked as they were prepping me that he would appropriate my surgery as he had a 20 hour surgery day before. If you want someone that only does aortic valve and aneurysm Roselli is you guy as that is all he does and has been there since he interned over 15 years ago. Just note he books out months in advance, I would have had to wait an additional 3 months to get Roselli.
 
My biggest concerns are removing drainage tubes, brain fog and the prospects of some kind of complication. But I've come to the conclusion from watching a few friends who have gone through some serious surgical procedures, including heart, that attitudes played a huge role in their recoveries. Easier said than done, but your quick grab of the laptop is inspirational and I'm glad to hear.

The worst and it was not horrible was the bug drainage tube, they tell you hold your breathe and they pull it out, it almost feels like they are pulling your intestines out as there is a good 6+ inches inside you, but it is over in a flash and no real pain, just a weird feeling. Really I am wuzz and was surprised how little everything bothered me other than the first 24 hours coming out of anesthesia. And you are right pre-conditioning and attitude make up a lot, do not wallow in misery or live on pain pills, get up and moving and you are good to go.
 
I like to think that would be me. I'm 66, now on the 3-month scan-plan and have my own business. I'm asymptomatic and I've been living with the BAV issue for 40+ years and the known aneurysm for at least 5. The aneurysm is closing in on 5, which is CC's magic size, but we are now keeping a very close eye on my left ventricle, which for the first time has now started flashing yellow. I'm considered in good health, eat well and exercise regularly. I now consider everything I do, including core strengthening, as a form of pre-hab. My mind is at peace with the eventual surgery; lord knows, I've had a long time to think about it. This forum and others have helped immensely. My biggest concerns are removing drainage tubes, brain fog and the prospects of some kind of complication. But I've come to the conclusion from watching a few friends who have gone through some serious surgical procedures, including heart, that attitudes played a huge role in their recoveries. Easier said than done, but your quick grab of the laptop is inspirational and I'm glad to hear.
Removal of drainage tubes did hurt, but a friend, who was a surgical nurse and an AVR patient, tells me that some hospitals use flexible tubes rather than the rigid tubes that were used on me. Maybe pain from tube removal will be a non-issue for you.
 

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