Rex's Guestbook

Rex Austin   Thanks again Richard. He’s about a month out on his bookings. I’m not sure if that’s a long wait or not. Would be nice to hear from some folks that he has done surgery for. And yes I’ve had dogs all my life until recently. Decided it was time to give up that responsibility up after having two put down fairly close together. That’s tough stuff! Hope you and Shadow have a happy and blessed Easter!

Rex Austin   Beautiful animal! Shadow is lucky to be part of your family! Thank you for the research you have done for surgeons in my area. I’ve seen his name come up during my searches before. Maybe he’s the one I need to see if I can get an appointment with. Couple hours drive for me but may be a better choice for me. Thanks again for your help. Now Shadow says dad, let’s play ball!

Rex Austin   Hey Richard. Just wanted to let you know I spent an hour on a video conference with Dr Bryon Boulton. He took the time to call me between surgeries. I like his plan better than the first surgeon I was “sent” to. I wrote a post in my journal as to what he wants to do if you’re interested in reading it. But I just wanted to thank you for suggesting him. Best wishes for Shadow and his surgery 

DeLois Tweedy  Hi Rex, I had an aortic valve replacement in June 2020, when I had just turned 65. I chose tissue valve (bovine) over mechanical and had the TAVR procedure. However, I still take Eliquis (blood thinner) because of failing mitral and triscupid valves, heart failure, etc. 

My doctors and hospital are just over 2 hrs from my home, but very worth the trip for excellent care and I trust them wholeheartedly (no pun intended 🙂). They were my second choice, so very glad I didn't go with the first. Check out the accommodations through which ever hospital you choose. My hospital actually has a number to call for assistance with accommodations.

Hang in there and continue to research and ask questions. It is scary and confusing at the start of this journey, but please know the ones on this site can give you guidance, answer questions from a "been there done that" perspective. Of course this should be second to what your cardiologist/surgeon says. I'm praying for you and sending well wishes.

Rex Austin   Thank you both for sharing your experiences. It’s comforting to know I’m not alone in this venture. I’m sure everyone’s journey is a little different but there is a common thread in these stories. I’ll try and keep my journal updated so others that come behind me maybe will get some information they can use. Thank you again. 

Trygve Harris  HI. You should feel comfortable with your choices and the diagnoses. If that means a second of third opinion, then yes, by all means seek it out. In my case, no one in NYC caught my valve stenosis it over many years, despite my symptoms. I was working in Oman (and NYC) and there are no options there--they used to send people to other countries for open heart surgery. I was diagnosed at a hospital in Dubai  as I was moving here and the cardiologist referred me to a surgeon at the Cleveland Clinic in Abu Dhabi, which is about a 90 minute drive away. My Omani insurance, which is a French company, Axa, covers the world except the US (although you can get that too.) I am not up to driving long distance at the moment and my friend who is here for all of it, doesn't drive, so we have to Uber whenever I need to go to that hospital. I imagine he will come a couple of times when I'm hospitalized but it's an expensive Uber ride. The hospital has said it will keep me a couple of days longer than usual because of the distance. I don't know how any of this would translate to your situation, but if you have a good relation and communication with your doctor, that will be the best way forward. Up until 2020, my insurance would have included international travel for a procedure such as this, and also for one companion, + hotel + air fare + meals + a daily stipend. Now that's only for minors and their guardians. I had never heard of that in the US, but maybe it depends on your insurer? Hopefully some of that is relevant. Good luck!

Richard Munson  I echo the sentiments about 2nd opinions. It is possible that you are eligible for a repair not replace so it pays to have another set of eyes review your echos. Preferably a surgeon who has a ton of experience in mitral valve repair. It may require a location not in your backyard. My first surgeon wanted to replace but second in boston said repair. I also had maze at same time and so far no a fib recurrance. You can find hospital ratings and doctors for heart surgeries on line. Worth checking out.

Richard Munson  I noticed that wake med in raleigh was highly rated on this site for heart surgery and a couple of the doctors on their site touted their high numbers of valve surgery. Not trying to be pushy, just curious and helpful. Raleigh must be somewhat close by. You live in a beautiful area if you are near ashboro where we visited last may to pick up our new puppy. Rural for sure. Good luck and don’t wait too long. The worse a valve gets the harder to repair. Its easy to put it off , after all, who wants heart surgery. I finally said, enough testing, get this done. 

Susan Lynn  I had a mitral valve repair and had discussions with several surgeons in and out of my geographic area. I ended up just outside of Philadelphia (a two-hour drive from here) and was happy with my choice. Choose the experienced surgeon you trust. The distance is a consideration, but not a top priority. The hospital will give you info regarding local accommodations, etc. Mine was very helpful! Best of luck with your research!

Grace Mason   I am traveling 2 hrs this week for a second opinion, and 4hrs for my third opinion. The hospital 4hrs from me sent information about nearby lodging with shuttle service. I am making the 2hr trip a day trip but if I had inquired I'm sure their office would have provided lodging suggestions, as well. Glad you are considering second opinion

Grace Mason   You may have found this already but if you use surgeon finder and search by state then scroll to bottom of that search it allows you to narrow that selection and also then search by valve.

George Gardopee  Rex - I believe the best place in the East for complicated mitral valve repair is the Cleveland Clinic. To get a second opinion, you can have all the imaging you have had done to date (echos, CTs) sent to them for evaluation. I’d recommend Dr. Gillinov without hesitation but you may have to wait a bit as he is in demand. 

 The CC has at least two hotels that are affiliated with the Clinic and one is, I believe,  attached to the Clinic. The hotels run shuttles to the airport too, I think. Others here have had luck with flying after surgery. I only had a two hour drive, but flying after should not be an issue. 

Rex Austin   You all are so kind. I’ve been following this site for quite some time knowing that one day I was probably going to need surgery. Glad I finally joined in the conversations. The surgeon finder did show one in Raleigh which is about 125 miles from me. Obviously I’m impressed with Cleveland Clinic and their success stories. My family says they don’t want me to travel to get this done. They’re concerned that if there’s issues down the road, the cardiologist and surgeons here wouldn’t be so inclined to help me. Anyone have any comments or experiences with this issue? Thank you all for your responses. 

Grace Mason   I asked my Cardiologist, who has followed me for 20 years, about after surgery, would I still see him if I had my surgery outside of the local  hospital with which he is affiliated. He replied, "Absolutely you can continue to see me, you can go wherever you want for surgery, to another local hospital,  Cleveland Clinic,  wherever, and still continue to follow up here".
If I had issues after surgery I would probably prefer to go back to original surgeon if possible, but in emergency I do not believe a local surgeon would treat a person differently in a medical situation. 

Rex Austin   Thank you Grace. You’re most helpful. They look at you and say, “do you have anymore questions?” I’m sure I will but I don’t know what to ask. This seems to be a great resource for information. Maybe I will learn my way around in here and hopefully make a good decision for my condition. 

Marie Myers  Hi Rex, Definitely get that second opinion Your insurance should pay for that, although you may have an out-of-pocket portion to pay. Repair is preferable to replacement, and I hope you can get that done. And yes, it is a hard choice between tissue and mechanical valve. Wishing you all the best!

Ana Brusso  Welcome Rex, always agree with second and third opinions myself. Hope you find the right one. I didn’t have to decide on valve because of age it was decided for me and so far doing well on my bio after three years. Good luck to you and keep us posted. God bless you 

Klara Čičić  Yes Rex, be 100% sure it is not repairable ... Opinions vary from surgeon to surgeon based on their skill. Best surgeons can repair most mitral valves with no need for replacement and for anticoagulation therapy... Hope you find a way to get that second or even third opinion.