Hello. And help me in planning for bicuspid aortic valve replacement

[stewartu]

Hello, all. I am a 57 year old male with a bicuspid aortic valve. The valve needs replaced. I'm thinking of contacting Cleveland Clinic for the surgery. Is it as simple as contacting them and having them request my Echo results from my local cardiologist? I believe that my insurance will have no issues with my going to CC for the procedure, but I'll check with them on Monday.

My head is spinning and I could sure use some input from someone who has gone the route of traveling to CC for this procedure.

Thanks in advance

 

[pellicle]

Hey Stew
sorry, I can't help you with the navigation because I'm an Australian (and the details of health systems are different here).

The teams (CC and your cardio for instance) all have pre-established lines of communication and it will all happen without too much mule work from you. Just follow the directions and it will unfold. Certainly ask specific questions there (at the Cardio) and here as they arise.

I can only say that you should just take this elephant "one bite at a time" as Dick here says. Its like building a shed or a house, just keep at it and it happens over time.

Plumbers are equally difficult to find and the issue you have is more or less a plumbing problem. It will all work out in the end.

Best wishes

 

[MdaPA]

My head is spinning and I could sure use some input from someone who has gone the route of traveling to CC for this procedure.

sterartu, certainly post your specific questions and you should get some helpful replies. You can also use the "Search" button in the top right to find previous posts. Here are just 2 posts to get you started:

Has Anyone Traveled to the Cleveland For Surgery?

Hi! New member here and glad to have found you.

I'm thinking of contacting Cleveland Clinic for the surgery. Is it as simple as contacting them and having them request my Echo results from my local cardiologist?

Check out the below link regarding contacting CC for an appointment and getting them your records.

Make an Appointment with a Heart Care Specialist | Cleveland Clinic

 

[Chuck C]

Hi Stewart and welcome to the forum.

You have some great links provided above on this subject. Many here have had their surgery at CC, so I'm sure if you have specific questions you will get plenty of help.

@bizinsider had his surgery there a couple of years ago. He's a very helpful person and I'm sure would be happy to help you with any questions or concerns that you may have.

 

[stewartu]

Thank you all for your input.

 

[Croooser]

Here is my thread from last year. If you have any questions, reply to this thread with them and the "CC Alum Team" will jump in.

https://www.valvereplacement.org/threads/cleveland-clinic-questions.888038/
HTH

 

[Croooser]

One other thought from my experience.

My wife and I believe that travelling to Cleveland was easier on her than getting my surgery in either Tampa or Orlando - each of which is about a 45 minute drive from where we live because we stayed at one of the three hotels within walking distance to CC. So, no rental car or parking or traffic and commuting to deal with for her. CC provides a complimentary car service to and from the airport for heart surgery patients and has a concierge to assist in making travel arrangements.

 

[MrsBray]

At the time of my surgery, my insurance was through my employer. We had a "Patient Advocate" on site - she was an employee of the insurance company with an office in our admin building. She was INVALUABLE to me while navigating the health care system! I stayed local for my surgery - <30 minute drive. I was a textbook/low risk case and the local hospital had an innovative valve clinic with excellent surgeons. I can also see Crooser's point of having everything arranged and taken care of for you, if you're more than a 30 min drive from an excellent hospital.

 

[KLS39]

Welcome to the forum.

 

[carolinemc]

Hello, all. I am a 57 year old male with a bicuspid aortic valve. The valve needs replaced. I'm thinking of contacting Cleveland Clinic for the surgery. Is it as simple as contacting them and having them request my Echo results from my local cardiologist? I believe that my insurance will have no issues with my going to CC for the procedure, but I'll check with them on Monday.

My head is spinning and I could sure use some input from someone who has gone the route of traveling to CC for this procedure.

Thanks in advance

We can give experience advice. but we are not doctors and your surgeon has to be on staff there at the Cleveland Clinic. You need to make an appointment with their cardio and go from there. Otherwise, you can have it done at your Cardio's hospital. Your choice, but the surgeon has to be on staff at the Cleveland Clinic. Good luck.

 

[gpr100rs]

I had aortic valve replacement surgery at CC in April, 2021 performed Dr. Aaron Weiss with Dr. Eric Roselli assisting, I highly recommend either. I was worked up at the University of Michigan, but chose CC for the surgery, which was only a 3 hour drive. If you choose a CC surgeon, the doc's staff will walk you through the process, which is easy. CC will set up a portal for you to forward your echos, CT scans and heart cath. Plenty of accommodations around the hospital. In addition to my wife, I have four daughters, so we went through VRBO and rented a house for the week of my surgery, very convenient. CC is one of the best facilities in the world so for their top surgeons, they are usually booking surgeries out several months. All the best as you begin your journey!

 

[bizinsider]

Hi Stewart....

What everybody else said.

I was 67 when I had my surgery by Lars Svensson a little over two years ago. I turn 70 two weeks from today! By now I'm sure you have figured out their protocol for initial out-of-town interaction. I flew from San Diego - actually, drove up to Los Angeles for the nonstop. I know others from San Diego and elsewhere who did transfers. You will be in a wheelchair at the airports post-surgery – don't fight it, just go with it and enjoy the rides.

I was in the hospital for 8 days (a minor complication unrelated to my heart, but a side effect of the surgery) and left on Day 10 and was sitting at my desk attempting to work on Day 11... and worked from that point on, resting when needed. I stayed in the connected InterContinental, which was a life saver for my wife... just being that close.

CC is a machine, but in a good way. In the end, they'll want to do THEIR tests.

If you are in halfway decent shape, with a good mental attitude, you should sail through. The drugs help mask the worst of it, but in general I do believe most people here will say the bark of the surgery is worse than the bite. Make no mistake - it's a big deal and a huge surgery (I had valve/root/ascending aorta and to my surprise, a single bypass) but within a few months I'd never know anything was done. The 9" scar has pretty much disappeared... or what's left of it isn't anything I think about.

I feel great, and would have responded sooner but was in the Galapagos. And that's my point... this will be a twist in the journey of your life but before you know it you will be back to your old life, just perhaps with a somewhat new outlook on things.

Feel free to ask any questions.

Cheers,
Herb

 

[tom in MO]

If you just have a BAV with no complications, this is routine at all major heart hospitals. No need to travel to Cleveland. I had mine done locally and all went fine. Part of the operation is after-care, rehab, etc. This will be done locally and not coordinated by Cleveland, you'll need to arrange that yourself.

 

[bizinsider]

If you just have a BAV with no complications, this is routine at all major heart hospitals. No need to travel to Cleveland. I had mine done locally and all went fine. Part of the operation is after-care, rehab, etc. This will be done locally and not coordinated by Cleveland, you'll need to arrange that yourself.

Very true. All after care is done locally. As for Cleveland, Mayo or a local hospital - key IMHO is that the surgeon has done a ton of whatever your procedure is and the facility has a focus on cardiac care. The more the better. Always good to get multiple opinions.

 

[Peej]

Similar thinking for my surgery. I'm sure all would've been fine had I stayed local but I was willing to do a 5 hour drive for the surgeon at Cleveland Clinic. My operation was done by a surgeon who supposedly did 15,000 surgeries during his career and was down to his final month or two & about to retire. Certainly gave me some level of comfort ahead of my surgery date. Everyone is different.

 

[Om Gnome]

Hello, all. I am a 57 year old male with a bicuspid aortic valve. The valve needs replaced. I'm thinking of contacting Cleveland Clinic for the surgery. Is it as simple as contacting them and having them request my Echo results from my local cardiologist? I believe that my insurance will have no issues with my going to CC for the procedure, but I'll check with them on Monday.

My head is spinning and I could sure use some input from someone who has gone the route of traveling to CC for this procedure.

Thanks in advance

Hello, I am also 57 and had aortic valve replacement surgery a little over 4 weeks ago. I was doing regular check-ups and echos for years at UW Medical Center and I did have the tests transferred to my new medical provider when I moved. Not sure how CC does it, but based on my experience they will barely look at your older tests and focus specifically on the tests they do and what your condition is now.

My condition went downhill fairly rapidly over the last year. I had an echo done at OHSU in February and the first cardiologist didn't take it too seriously. Fortunately at OHSU they work in teams and another cardiologist was very concerned and got me on a fast track. Even so, I barely made it to the day of surgery. My blood pressure was 85/55 and continuing to drop and my heart was racing the week before my surgery (May 25th).

I guess my point is, the older tests are all well and good for comparisons sake but conditions can change fast and current tests taken by the provider where you will have the procedure are probably the best bet.