Out of town surgery question and hello from a new member

[Leah]

Hello. I am new to this site. I'm a health/active 57, originally diagnosed 4 years ago with mild-to-moderate aortic stenosis secondary to a bicuspid aortic valve. It's progressed and I'm now diagnosed as varying degrees of severe on different tests (echo says very severe/critical, cath says barely severe, now scheduling a transesophageal echo). No other problems (clear arteries, good cholestrol, etc.) Because I'm viewed as asymptomatic, I'm in a classic "gray area" concerning the decision whether to have surgery soon or wait, and I'm taking advantage of the time to get a bunch more information about the choices (surgery now or later, which surgeon and hospital, which valve, etc.)

I'm going to consult at the Cleveland Clinic in a month or two and am very impressed with their reputation, mortality stats, cutting edge techiques (pun intended), etc. It appears that a number of members on this site have gone out of town to CC and other outstanding hospitals for VR surgery and I will seriously consider doing this. I live in Northern California so there would be substantial travel. I want to get a better sense of how that works in the real world. I'm told that, between my overall health and the possibility of minimally invasive surgery (the latter hasn't been confirmed) I might only be in the hospital a few days. So what then? Do you get right on a plane and fly home 3,000 miles, including plane changes? Do you hang out in your hotel room in Cleveland with your family member(s) for the next week or two of recovery? How do you handle any immediately-post-op check-ups? I've been told that "older and sicker" folks might go from the hospital to a skilled nursing facility but that I probably won't need (or want) that. For both you and your family member or friend who accompanies you, how does it work not to be at home?

I will be grateful for any light you can shed on this - and am sure I'll have many more questions along the way.

 

[Mary]

Hi, Leah!
I'm glad you joined us.
Members who have journeyed to have their surgeries will be along shortly to answer your questions, but I believe most have been released from the hospital and then stay a few days longer in town.

I also have/had a bicuspid valve, and for what it's worth, if I lived in CA, I would probably go to Cedars-Sinai and have Dr. Raissi do my surgery. Bicuspid valves are a little different from other aortic valves, and they are doing a great deal of research with them.

 

[Phyllis]

Welcome, Leah. There are many here who have traveled long distances for their surgery. Most stay in a hotel for one or two days after surgery before flying home. Don't be shy about asking for wheel chair assistance at the airport. You will also most likely have a cardio at home lined up who will attend to your immediate needs and your future care and just a "farewell" appt. with the surgeon at around 6 weeks. Best wishes to you in your search and your decision and please let us know how things go.

 

[Bonzo Dog]

Hello Leah,

I feel like a parasite. Many of the questions asked by you have been in my mind also and I was formulating a similar post to yours. I shall read the answers with interest.
I'm a newbie on here as well

 

[ctyguy]

Hello Leah...

Im 3+ weeks post-op from an Aortic Valve replacement (On-X Mechanical) at the Cleveland Clinic and the procedure was minimally invasive (5 inch incision). I live 2 1/2 hrs away by car so when I left the hospital, getting home wasn't all that bad, a couple of stops on the way for me to get out of the car and straighten up, no big deal. Obviously I wasn't the driver.
My roommate was 77 years old (Im 42) and he had a much larger procedure than I did. He had a valve replacement, 3 bypasses and a hole in his heart repaired, he was from San Diego. Once he was released from the hospital it was there intention to spend a day or two in a local hotel and then fly back to S.D. I think that was more of a timing issue than anything else. If they could have gotten on a plane I think they would have right away. I would suggest you have a cardiologist back home in your sights who is well versed in valve surgeries, your not going to be going back and forth between California and Cleveland. Once the surgery is over its really all about after care and Cleveland Clinic isn't going to play a big part in that unless you choose to stay for weeks/months after the fact. That is very common. Seems when I was there I was one of the few that was having heart surgery that was from Ohio. My roommate was from California, he told me the guy that was in my bed before me was from Turkey. Two gents I met the day of my surgery(in pre-op) were from England. Given the number of procedures performed at the clinic each year it seems everybody comes from all over the US and the world. On this site you can inquire about Cleveland Clinic and I think you will see alot of folks from all over the US who went there because of the reputation of the hospital and the surgeons. I know Im very pleased with my choice.
If you want further info you can send me a private message, I will be happy to tell you all I know and what my experience at the clinic was like. I was also Biscuspid Aortic with severe stenosis. Now Im On-X mechanical with normal heart function and am chompin at the bit to get fully healed and back into life !

 

[thenewmarket]

Welcome Leah!

My husband had ascending aortic aneurysm repair and bicuspid aortic valve repair (not replacement) at Cleveland Clinic in September 2007. Being from California, I would certainly investigate the surgeon suggestion already given. However, if you opt for Cleveland Clinic you will be in excellent hands also. If a repair is an option in your situation, you want a surgeon who is experienced in repairs!

We flew to Cleveland for all our pre-surgery appointments and then scheduled surgery three weeks later. We drove from Tennessee to Cleveland (8 hours) for surgery and drove home nine days after surgery. Most people do all this in one visit, but for us it worked out best to have the three weeks to get my husband's business prepared for him being gone. The drive home was no problem, he just sat in the back and enjoyed the scenery.

You will make the right decisions for you and your family. If I can help with any Cleveland Clinic information, I will be glad to do so.........

Just ask away!

 

[Freddie]

Welcome Leah.

I can't add my 2 cents here, but just wanted to welcome you to this most informative site.

Don't be shy, ask anything you want. There is no such thing as a dumb question.

Take Care

 

[kfay]

Leah, I am having my surgery at the Mayo clinic in Minn. in 2 weeks and I live in North Carolina. I have asked several times if I can fly home the day I get out of the hospital and the answer has been yes everytime. It just seems unbelievable to me that they can do that big of a surgery on you and send you on a plane a week later. That being said, my local cardio. would like me to stay up there an additional week. I plan on staying an extra day or two depending on how long I have to be in the hospital. I also had my first OHS many years ago at Duke (I lived in Tenn. at the time) and flew home the day after I got out of the hospital. Good luck to you.

Kim

 

[CHDDoug]

Hi Leah! Glad you joined the group. As far as surgery out of town, I live just outside of Nashville, TN and had aortic valve replacement 6 weeks ago in Plano, TX (12 hours away by car). I'm 33 years old and in good health as well. I was also asymptomatic prior to surgery...which made it difficult to decide when the time was right to have surgery. How long you stay 'in-town' after surgery will depend on what your surgeon wants to do (in my experience). I consulted two out-of-state surgeons (one in NY and one in TX) and they had different philosophies. Dr. Stelzer in NY wanted to keep in the hospital for around 5 days (normal) and then have me stay in NY for another 5-7 days so that he could check me out again before I left town. Dr. Ryan in TX was originally going to keep me in the hospital for about 5-6 days and then discharge me to a hotel nearby for another 1-2 days before checking one final time before I left. I did so well with my recovery that he just kept me in the hospital for 6 days and then discharged me to go ahead and head home. By the way, we decided to drive instead of fly. I'm not sure that was a smart idea...mainly because we have a 2 year old and 3 month old at the time. Had it not been for the kids, it wouldn't have been so bad...12 hour trip over 2 days.

I wish you well in your research! I'd do as much as I could so that when the actual day gets here, it's a piece of cake. My recovery hasn't been bad at all...mainly because I was pretty prepared for what I'd experience post-surgery.

Take care and keep us posted.

 

[ALCapshaw2]

Welcome Leah,

You may also want to contact ChristinaL who had her surgery at CC and flew home to Colorado. I don't remember the details, but you might be able to find them by checking the date of her surgery (in the Member List info) and doing a SEARCH for her posts around that time (and later).

Have you checked out any of the Surgeons around San Francisco? One of our members had a complex Aortic Valve Replacement and Aorta repair at Stanford.

'AL Capshaw'

 

[Leah]

Overwhelmed by your quick responses

Overwhelmed by your quick responses

Thank you so much for these responses. It's very helpful to know that travel is apparently a less overwhelming matter after surgery than I would have assumed. I'm also going to digest, and follow up on, many of the suggestions. I just joined yesterday so am still figuring out basics about how to navigate the site - how to contact members individually, how to add the tag line with the diagnosis/history information most folks attach to their messages, etc. I'm glad to be able to benefit from everyone's research and experience!

 

[Diane]

Leah,
I highly recommend Stanford. I had my pulmonary valve replacement there 3 years ago. The care I received was excellent! I also know people that have had VR at UCSF and they have also reported excellent care.

Another thing to consider is your insurance. Will CC be covered on your insurance? The cost of a valve replacement can be very substantial. I believe there was a thread on here some time ago that dealt with the cost. If I am remembering correctly, most people said their surgery was between $100,000 and $200,000. My insurance only pays 50% for services out of network.....there's no way I could have paid 50% of my bill if I had gone to CC or Mayo!! But I did not "settle" on Stanford.....they also have some of the leading cardiologists and surgeons in the nation. I felt like I was in very capable hands.

~Diane

 

[Bina]

Leah, welcome to the group!!
To modify your signature and add details:
Look up on the blue band line, click on the left "user CP".
then click on Edit Signature, on the left.
Don't be scared to play around on the site....Ross can guide you too.

 

[Susan BAV]

Hi Leah - Welcome to the site! There is a member here, Tom D I think, who just had surgery from [I believe it was a Dr. Miller] who is another bicuspid expert up in Northern California. I'll look for a thread you can click on for more info that you will probably find informative...

Here's a report from Tom's wife, Judith, just following his surgery: http://valvereplacement.com/forums/showthread.php?t=24085&highlight=Miller

 

[WayneGM]

I can't add any insights or information to what has already been said. Welcome to the VR community. Glad you found us.

 

[Freddie]

Whats a "tag Line"???
Have I done that???

 

[Susan BAV]

Whats a "tag Line"???
Have I done that???

I think she means our signatures.
And yes, you've been there and done that .

 

[Bradley White]

Hi,

I had my second aortic valve surgery at the Mayo Clinic in Rochester, Minnesota. I was in the hospital for five days and then in the hotel for one night. The next day I flew 'home' to Tampa. I put home in parentheses because it is not where I lived, but where my parents live. They took care of me for a few weeks. The flight was not fun, but can definitely be done with the help of a friend or family member. I had a connection and had to change planes in Minneapolis. I just requested wheelchair service from the airline and they wheeled me right to my next flight and then let me board before anyone. I was dead-tired when I finally got home, but I was glad to be there. If I had to do it over I would do the same thing.

Best,

Brad

 

[Taylor]

Leah - I wholeheartedly agree with your approach to take advantage of the time you have to fully research when, where and how you have this surgery. My number one goal when I had my ascending aorta and aortic valve replaced was getting together a list of highly qualified and experienced surgeons that specialized in what I needed and then finding the one I was most comfortable with. Location was a factor but the quality of the surgeon and my comfort level were most important. I'm from San Francisco and as it turns out the surgeon that met all my criteria was right in my back yard. Like TomD who was mentioned in a previous post, Craig Miller at Stanford did my procedure. He and his team are world-class. It's easy to say after the fact, but I would have travelled to wherever he was to have him do the surgery. While no doubt places like the Cleveland Clinic and Mayo Clinic are great, there are some top notch surgeons very close to your home as well.

Take care and good luck.

Taylor

 

[Jeeb1]

Hi Leah--Dr. Gaudiani in SF is fabulous. He did my second mitral replacement. I traveled to see him.