Should I stay or should I go?

[RTZdad]

Hello everyone,

I'm new to the site and am trying to decide on whether to travel go the Cleveland Clinic or stay home and have it here in Denver. I met with Dr. Kevin Miller here and liked him quite a bit. Our insurance allows for us to have the procedure done anywhere. My surgeon in Cleveland would be Dr. Joseph Sabik. So torn about what to do...I'm 37 years old, born with BAV and now have severe regurgitation. They have diagnosed that I need to have my aortic valve and root replaced. (Going for the mechanical
Valve). Any advice?

 

[Mentu]

Welcome to VR. I think most of us have some choice in the selection of surgeon and hospital. I can only share my own experience. I came to believe that the important thing was to find an excellent surgeon skilled in the surgery I needed. As I started looking, I found that several of our local surgeons compared well to many in the big name hospitals. I finally decided to stay in Tulsa. For me it was the right choice. I had a great surgeon in a very modern smaller hospital. Since it is near my home, I was never far from friends and family and after I returned home, all of my doctors were in easy reach should a problem develop. I think many share this experience. Where it becomes more problematic is when a person has a complex or unusual problem that requires special experience or even a special facility which most of us do not.

Larry

 

[Greg a]

A heart felt WELCOME to our OHS family glad you found the site most of the community are OHS brothers and sisters,(read no medical professionals) there are some minimally invasive surgeries as well so ask away, there is a wealth of knowledge here for the future ..... I think Larry has already summed up my thoughts


Bob/tobagotwo has up dated a list of acronyms and short forms http://www.valvereplacement.org/forums/attachment.php?attachmentid=8494&d=1276042314

what to ask pre surgery http://www.valvereplacement.org/for...68-Pre-surgery-consultation-list-of-questions

what to take with you to the hospital http://www.valvereplacement.org/forums/showthread.php?13283-what-to-take-to-the-hospital-a-checklist

Preparing the house for post surgical patients http://www.valvereplacement.org/for...Getting-Comfortable-Around-the-House&p=218802

These are from various forum stickies and there is plenty more to read as well


And Lynw added this PDF on what to expect post op
http://www.sts.org/documents/pdf/whattoexpect.pdf

 

[RTZdad]

Thanks for the welcome! I have met with two different surgeons here in Denver. My surgery is tentatively scheduled for April 4th in Cleveland. I really liked Dr. Miller, just debating about whether to go with the best. Do I go with a guy who has done 600 or the guy who has done thousands? While my surgery isn't considered complex, my wife and I want to ensure that we get the best care. The information provided by you above was great. Thanks. I have been reading on the site ever since I was told that I needed surgery. it's been a huge help (also bought Adam Pick's book too).

 

[Lynlw]

Hi One tthing i would think alot about and discuss BEFORE surgery is what happens If you do travel far and then run into major complicaton when you get home. Its not something people want to think about but it happens. Would the local hospital be willing to take care of another centers heart patient, would both sets of doctors work things out over the pone so you get the right care..Surgeons often dont like to re open other surgeons patients. would you have to be airlifted back? How much time could be wasted while you are getting worse? How long would you have to stay there.
We've had a few members who have gone thru nightmares like that when they travelled for their surgery. evan tho my son's last few surgeries were very complex, when it came down to it one of the reasons we chose the hospital we did (still one of the very best) was because it was 20 min from our home , the other one was over 5 hours away. When he ran into complications a week after we were home i was so releived he was close to where he had surgery so they knew him and his history.

IF it was a complex surgery I might travel, but for a first time surgery a surgeon who has done 600 should have enough experience o handle anything that comes up.

 

[RTZdad]

Great points Lyn, thank you for responding. I would agree that it would be easier for us if we had the procedure done locally. When we met with Dr. Miller he mentioned the possibility of having to take me off of the heart-lung machine and "make me dead (his words)" if my aorta doesn't require a simple fix. While it is only a possibility, and the CT scan that I am due to have may alleviate the necessity, it added an additional level of concern to my upcoming procedure. If that ends up being the case the debate would not even exist. I would head to Cleveland. I am now leaning towards traveling based on my research of Dr. Sabik. I will check to see if Dr. Miller would be open to treating me if I choose to leave for the surgery.

 

[Lynlw]

Great points Lyn, thank you for responding. I would agree that it would be easier for us if we had the procedure done locally. When we met with Dr. Miller he mentioned the possibility of having to take me off of the heart-lung machine and "make me dead (his words)" if my aorta doesn't require a simple fix. While it is only a possibility, and the CT scan that I am due to have may alleviate the necessity, it added an additional level of concern to my upcoming procedure. If that ends up being the case the debate would not even exist. I would head to Cleveland. I am now leaning towards traveling based on my research of Dr. Sabik. I will check to see if Dr. Miller would be open to treating me if I choose to leave for the surgery.

One other things to remember is sometimes the best biggest hospital, are often the busiest and even tho most people have nothing but praise for their care others had a terrible experience as far as their care, SOMETIMES we hear more complaints about the care in CICU /or floor from the well known centers than we do the smaller hospitals that are closer. Without knowing the area or knowing what experience the doctors have in what YOU need done, my best advice would be to follow your gut feelings. that way no matter what you wont 2nd guess yourself and ask what if

 

[JeffF]

Hello everyone,

I'm new to the site and am trying to decide on whether to travel go the Cleveland Clinic or stay home and have it here in Denver. I met with Dr. Kevin Miller here and liked him quite a bit. Our insurance allows for us to have the procedure done anywhere. My surgeon in Cleveland would be Dr. Joseph Sabik. So torn about what to do...I'm 37 years old, born with BAV and now have severe regurgitation. They have diagnosed that I need to have my aortic valve and root replaced. (Going for the mechanical
Valve). Any advice?

Welcome RTZdad! Our cases are very similar. I was diagnosed with BAV and severe AI in October and had surgery in mid December. I'm from Northern Virginia and was referred by my cardiologist to go to Johns Hopkins in Baltimore. After meeting with my surgeon at Hopkins I decided to travel to Cleveland Clinic for a second opinion. At CC I met with Dr. Sabik, and spoke to him for about 30 minutes. We spoke about both mechanical and tissue options and he was very non-committal on giving me a recommendation on valve type. CC was a very impressive hospital. Everything about it was top notch. After meeting with Dr. Sabik I decided to stay with Johns Hopkins as there wasn't a real difference on treatment or procedure. Even though I decided to stay with my first option at Hopkins the fact that I had gone and met with Dr. Sabik @ CC gave myself a great deal of confidence that I was making the right choice. I would recommend anybody to get a 2nd opinion especially at the #1 Heart Surgery hospital in the country. The piece of mind that I left Cleveland with was huge. It helped me immensely in moving forward with the surgery.

Please feel free to let me know if you have any questions.

Jeff

 

[mainframe]

I went out of town 800 miles for my surgery. We flew from Seattle to San Francisco. I ended up having more compilcations than expected including more than 2 months in the hospital and staying in San Francisco for 3 months rather then the 3 weeks we anticipated. My wife and mother-in-law (has alzhiemers) needed had to rent a place to stay, flights back to Seattle my wife had to make while I was still in the hospital & rental car much longer than we thought. While we made it through the ordeal, it ended up costing more than $20,000 out of pocket for expenses that were not related directly to medical care.

Going out of town can be great. I got super medical care. But there can be a downside.

 

[RTZdad]

I'm glad to hear that you are doing well after your surgery. I don't know that the hospital here would be on par with Hopkins. That being said, I am curious to hear what your impression of Dr. Sabik was beyond the treatment discussion. I won't get a chance to meet with him until the day before surgery. I won't have the chance to fly out there prior to my proposed date of 4/4.

 

[JeffF]

I'm glad to hear that you are doing well after your surgery. I don't know that the hospital here would be on par with Hopkins. That being said, I am curious to hear what your impression of Dr. Sabik was beyond the treatment discussion. I won't get a chance to meet with him until the day before surgery. I won't have the chance to fly out there prior to my proposed date of 4/4.

Thanks.

Dr. Sabik was very nice and seemed to genuinely want to answer any question we had. We only spent 20-30 minutes max with him so it was over very quickly. My overall impression of CC was great. It was a very efficient hospital. All of my tests and appointments were on time and there was not a lot of down time outside waiting to meet with Dr. Sabik who had to be called into surgery.

Good Luck with your surgery you will do fine. I think one of the things that we have on our side in the recovery process is youth. The body seems to heal faster the younger you are.

Jeff

 

[RTZdad]

I went out of town 800 miles for my surgery. We flew from Seattle to San Francisco. I ended up having more compilcations than expected including more than 2 months in the hospital and staying in San Francisco for 3 months rather then the 3 weeks we anticipated. My wife and mother-in-law (has alzhiemers) needed had to rent a place to stay, flights back to Seattle my wife had to make while I was still in the hospital & rental car much longer than we thought. While we made it through the ordeal, it ended up costing more than $20,000 out of pocket for expenses that were not related directly to medical care.

Going out of town can be great. I got super medical care. But there can be a downside.

There is a lot to weigh when considering to travel. Thank you for sharing your experience with me. It would really suck if my stay was prolonged due to complications. I am sorry to hear that your second surgery turned out to be so expensive. It must have been a really difficult process. I had hoped that I would get a really solid feeling or sign when I met with the local surgeons. I may have with the second one (reminded me of my father-in-law who has passed away) but don't know if I was so desperate for a sign that I talked myself into seeing something that wasn't there. I wish that I had more clarity with my decision...I also wonder if my wife and I are over-thinking it. I'm 99% sure that I want to make the journey to Cleveland and eliminate any second-guessing.

 

[Greg a]

Being "king" of complications (my wife says I am an overachiever and attention hog) I am so glad to be minutes from the site of the crime so to speak. I still attend a heart function clinic (for CHF) and implant clinic (for my ICD) at one location where my procedures took place 5 mins from home and a diabetic clinic and renal failure clinic ( I was on 24hr dialysis while in the second coma) about 10mins away. Between the two facilities I see my nephrologist, cardiologist, endocronologist, EP (implant clinic), cardiac RNP but Iseem to see my cardiac surgeon more at COSTCO than st his office .....the furthset I have had to drive is 1 Hour for tha ICD implant because while it is common place here at St Marys I agreed to partake in a national study (RAFT) that was implanted at London Health Sciences in conjuntion with The Ottawa Heart Institute but monitored here at St Marys....so me local works great for continued followup

 

[RTZdad]

Being "king" of complications (my wife says I am an overachiever and attention hog) I am so glad to be minutes from the site of the crime so to speak. I still attend a heart function clinic (for CHF) and implant clinic (for my ICD) at one location where my procedures took place 5 mins from home and a diabetic clinic and renal failure clinic ( I was on 24hr dialysis while in the second coma) about 10mins away. Between the two facilities I see my nephrologist, cardiologist, endocronologist, EP (implant clinic), cardiac RNP but Iseem to see my cardiac surgeon more at COSTCO than st his office .....the furthset I have had to drive is 1 Hour for tha ICD implant because while it is common place here at St Marys I agreed to partake in a national study (RAFT) that was implanted at London Health Sciences in conjuntion with The Ottawa Heart Institute but monitored here at St Marys....so me local works great for continued followup

King of complications ...very funny Your Highness! Thanks for the insight Greg. I'm hoping to figure out what's in my heart within the next few days. You're lucky to have such great facilities nearby. If I stay home, the hospital where my surgery would be is about 45 minutes away. I got my heart cath test done there and it seemed ok.

Tom

 

[SusQ]

We don't really have much of a choice for hubby's surgery. We live in the sticks and although a hospital with 50 miles does the valve replacement he needs, apparently the addition of the aortic root and portion of the ascending aorta makes it.more complicated. Our choice was how far to travel because like it or not, travel costs and distance do play into it. Cleveland was an option, but that would be a horrifically long trip post surgeey for hubby. In the end we chose Chicago. It's still a good 6 hour drive, but that's considerably shorter for us. Plus, hubby has family in the Chicago area that his parents can stay with should he be there longer than expected and my best friend is as well.

We are very comfortable with our choice. It's the beat balance we could find between excellent care and having a support system.

 

[Lionheart]

RTZdad,
Welcome to the site. I don't have any insights on whether you should stay or go away for your surgery and I think either would work out just fine. But if it would help for you to understand how traveling away works, then I can share my (positive) experience of traveling to CC for my surgery. Send me a PM and I'll send you my phone number and we can arrange a time to talk.
Best,
John

 

[TheGymGuy]

Hey RTZDad,
Wanted to weigh-in and say that I am in a similar situation to yours. My insurance will pay for pretty much any hospital we choose to get the fixing done at. I traveled to Johns Hopkins and also my local hospital (Suburban) and at the moment still on the fence about which one to choose. The surgeon I met at local hospital seems very very capable, but John Hopkins does do more procedures per day/year/etc.

Ultimately, these procedures have become so common now and the risk is so low that any hospital with lower published infection rates, with a surgeon that has done several hundred of these with high success rate and the one that you personally jive with and trust will all make for a pretty good choice.

 

[RTZdad]

We don't really have much of a choice for hubby's surgery. We live in the sticks and although a hospital with 50 miles does the valve replacement he needs, apparently the addition of the aortic root and portion of the ascending aorta makes it.more complicated. Our choice was how far to travel because like it or not, travel costs and distance do play into it. Cleveland was an option, but that would be a horrifically long trip post surgeey for hubby. In the end we chose Chicago. It's still a good 6 hour drive, but that's considerably shorter for us. Plus, hubby has family in the Chicago area that his parents can stay with should he be there longer than expected and my best friend is as well.

We are very comfortable with our choice. It's the beat balance we could find between excellent care and having a support system.

Thanks for the reply! I agree with you, having family around could make all the difference in the world. I am fortunate in the fact that my family will be travelling to wherever I have my surgery done. My wife will be taking time off from work so we can stick around town for a spell if necessary.

Tom

 

[RTZdad]

Hey RTZDad,
Wanted to weigh-in and say that I am in a similar situation to yours. My insurance will pay for pretty much any hospital we choose to get the fixing done at. I traveled to Johns Hopkins and also my local hospital (Suburban) and at the moment still on the fence about which one to choose. The surgeon I met at local hospital seems very very capable, but John Hopkins does do more procedures per day/year/etc.

Ultimately, these procedures have become so common now and the risk is so low that any hospital with lower published infection rates, with a surgeon that has done several hundred of these with high success rate and the one that you personally jive with and trust will all make for a pretty good choice.

Hi TheGymGuy,

Thanks for sharing your story with me. It does give me confidence that our surgery is basically commonplace nowadays. In debating on whether to travel or not I am starting to look at it as a way to eliminate one more what-if. If I had to choose between a surgeon with a God complex who steals candy from children on Halloween and performed 1000 surgeries or a really nice guy that I would play golf that has done 500, I think I might lean towards the former. I want the guy who refuses to fail. Plus going to a state of the art facility like Cleveland or Hopkins could be the difference maker. There is a reason that these facilities earn their recognition. The 2011 stats at Cleveland will be posted Friday on their website. While I am leaning heavily towards Cleveland, I still haven't made up my mind yet. Not too much time left to make a decision...

 

[Lynlw]

Hi TheGymGuy,

Thanks for sharing your story with me. It does give me confidence that our surgery is basically commonplace nowadays. In debating on whether to travel or not I am starting to look at it as a way to eliminate one more what-if. If I had to choose between a surgeon with a God complex who steals candy from children on Halloween and performed 1000 surgeries or a really nice guy that I would play golf that has done 500, I think I might lean towards the former. I want the guy who refuses to fail. Plus going to a state of the art facility like Cleveland or Hopkins could be the difference maker. There is a reason that these facilities earn their recognition. The 2011 stats at Cleveland will be posted Friday on their website. While I am leaning heavily towards Cleveland, I still haven't made up my mind yet. Not too much time left to make a decision...

It really sounds like you want to go to CFF so I think you should, Just remember tho every place including CCF has good and bad staff and sometimes in a larger place that does alot of complex surgeries, with patients that need alot of post op care someone 'younger and healthy" MIGHT seem to "fall thru the cracks", it has happened to members from here recently who travlled for the best.. As I said you can have either great or bad experiences anywhere, sometimes it is more frustrating, to put it mildly, to go thru the added time and expense to travel to the "best" and end up having worse care than you probably would have gotten closer to home, especilly for the more "routine' surgeries.