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Braveheart

Braveheart

Well-known member
Joined
Jun 25, 2008
Messages
225
Location
Florida
I recently learned that I am a candidate for AVR.

My gradient is: 34

Valve area (cm2) .99

My LVFX ejection fraction has worsened from 65% in 2003 to 51%.

I am 68 years old, in relatively good health, except for hypertension and high cholesterol, which is controlled by medication. I walk 3-4 miles a few times a week.

My heart is generally healthy, and I have had no symptoms until I learned about what I have to do. Since then, probably on account of anxiety, I have been rather tight in the chest.

I live in central Florida, near Tampa. I have been researching doctors and hospitals, and realize that it is not into my interest to have the operation done locally. Sarasota Memorial Hospital has done over 500 valve replacements last year, but their stats are certainly not as good as the Cleveland Clinic, in Cleveland. The Cleveland Clinic in Florida has better stats, but they don't seem to have done too many valve replacement procedures.

I had read that the AMA suggests that for a valve replacement, that it is best to go to a hospital that does at least 150 procedures a year.

I would like to go to a major hospital center, but I have practical problems on account of my husband, who has medical problems of his own. I don't know whether he could deal with being away from home for 5-6 weeks.

Does anyone know anything about Sarasota Memorial Hospital?

BTW, I am so pleased that I have found this site. I have been on it a few days, just reading and absorbing, but have just gotten the courage to post.
 
Welcome to the group!
I was also kind of lurking and reading alot before I joined in.....have no fear, we are harmless. Ask anything.
The weekend can be a bit slow, but others will come along soon enough with experience to share.
 
Welcome! I don't have info on Florida hospitals but I am sure others will come along who will. Cleveland CLinic, of course, is rated tops, but there are many other excellent heart centers around the country. I was fortunate enough to go to one of the best.

Wondering why you calculate you would need to be away 5-6 weeks if you went to a facility out of state? That seems unnecessarily long -- though, granted, if there were long travel home, that could be a problem.

Anyway, I am sure you will get a lot of informed responses.
 
Superbob- I figure that if I am far away from home, I will not have the wherewithal to sustain a long trip home during those first few weeks. Also, I would expect that there would be some follow up visits involved after the surgery, and I certainly would not want to be going back and forth to the hosptal.

If I go to Sarasota, the trip is only around 45 minutes by car, and that is probably more doable in the weeks post-op.
 
Welcome and I am glad you decided to post. If all goes well, you will probably be in the hospital 5 days and only need to go back to the surgeon for a check-up at 6 weeks. Your local cardio will take over your care at home. It's slow on the weekend, but I am sure many others will eventually come on with suggestions for major hospitals closer to you than Cleveland.
 
Hi again, Braveheart (love your screenname, BTW). :)

You may have already checked it out but here is the U.S. News & World Report ranking for top heart hospitals:

http://www.usnews.com/directories/hospitals/index_html/specialty+ihqcard


I see U/Florida at Gainesville ranks pretty high. In the South, Emory and Duke also have excellent reputations (among others, I am sure). In D.C. area, Washington Hospital Center and Inova Fairfax are among the good ones.

Wish I could offer more information. I understand your concerns about travel -- I remember just being driven back home 25 miles by my daughter (in a driving rainstorm, in DC traffic) was pretty harrowing.

Sounds like you are doing your research. I am confident you will be fine. I was 63 at the time of my valve-and-root replacement.
 
Superbob- I am familiar with US News Ratings..............and that is what's driving me crazy. I know that there are superior facilities around the country. I have been checking HealthGrades ad nauseum for most of the day.

I think that I need to walk away from this whole thing for the moment, and get back to it tomorrow. I think that I am going into overload.
 
Braveheart said:
Superbob- I am familiar with US News Ratings..............and that is what's driving me crazy. I know that there are superior facilities around the country. I have been checking HealthGrades ad nauseum for most of the day.

I think that I need to walk away from this whole thing for the moment, and get back to it tomorrow. I think that I am going into overload.
Click to expand...

Sometimes that's best to do. You have a lot to think about, but you need to put it in digestible chunks. You'll get it, just don't try to get all the answers in one day.
 
Welcome

Welcome

We live in Orlando, I contacted Shands 6 times and could not even get an initial appointment, they seemed disorginized and not what I wanted to deal with.

Cleavland/Florida Clinic, yes they are top shelf (thanks to this board I found them), after 1 call, spoke with 2 cardiac specialists and I am going on July 21 to meet the doctors, they do lots of aortic replacements, in fact they assigned a specialist and hope to do a minimal invasive/ robotic procedure, I am very excited(?) about this.

Dr Douglas Boyd, did the first closed robotic chest bypass 10 years ago, there is massive data if you search his name. UMM also is doing this as a more common approach:

http://www.umm.edu/heart/aortic_valve.htm

http://mmcts.ctsnetjournals.org/cgi/content/full/2006/0315/mmcts.2005.001131


Keep asking questions, there is a lot of good information here and a lot of veterans to learn from.

Best of luck, let me know if I can help

Keep smiling,

CJ
 
Braveheart,

You will find this forum a source of strength and wisdom from those who have walked in your shoes.

Welcome! I am glad you have found us.
 
Braveheart...I think 5-6 weeks is a very long time to plan on being away from home if you travel for surgery. I travelled to Minn. from N.C.. My husband and I were there a total of 12 days and it wouldn't have been that long but I needed a couple of days of testing before surgery and I stayed in the hospital for 8 days which is a little longer than most. I flew home the morning after I was discharged without any problems. We just set it up with the airlines for me to have a wheelchair the whole way and that made it very manageable. Also, on my last day in the hospital, they did all of my post op tests and meetings with Dr.s and sent me home to see my local cardio who then took over my care. I never needed to travel back to Minn.

Kim
 
Welcome, Braveheart! I don't think you would need to be gone nearly that long, barring complications........ We travelled to Boston from NC for my AVR since I had need for someone who could deal with my significant lung issues as well as the AVR. That meant 3 extra days before the actual surgery for testing, etc. I still can't believe how well everything went: was released on the 5th post-op day with no complications and did as well as folks with normal lungs! I think it had everything to do with being at a place that does this all the time and being operated on by a surgeon with lots of experience. It was worth the journey. We stayed in the motel for four additional days after my discharge (be sure it has a restaurant in it) and saw the surgeon one last time in his office before he released me to my cardiologist here at home. The flight home was uneventful- just use a wheelchair at the airport! We were gone a total of 2 weeks. Good luck to you!
 
I ordered a report from Healthgrades on Sarasota Memorial. The hospital appears to have a pretty decent record, with respect to valve replacement. Two of their doctors have studied under Denton Cooley in Texas. I will give one of them a call tomorrow, and get a "feel" for the doctor. If I am satisfied, I will stick with this. If not, I will consider a major medical center.
 
I spoke with the Patient Care Coordinator of the doctor of whom I am interested. The doctor is away, but she will give him the information on Thursday. She told me that I need to have a TEE and a catheterization done, before the doctor can decide his method of approach.

I cannot get to my cardiologist until July 10, so I suppose that I just have to put it out of my mind. I am going to NY on July 13th to have an annual checkup with my oncologist (18 years in remission:)). He is connected with New York Presbyterian Weill. I think that I will bring my "stuff" and ask his opinion.

The thing with this Florida doctor is that he does minimally invasive surgery, and is certified in the DaVinci method. I don't know if I am eligible for that sort of procedure, but it would be a plus if I am, and he can do it!
 
Welcome Braveheart...

I scanned through this post and wanted to throw out a few things your way. I had my procedure at the Cleveland Clinic (in Cleveland) and my roommate was a 77 year old male who had a valve replacement, 3 bypasses, and a small hole in his heart repaired. He went into the surgery on Thursday and left the following Wednesday. He and his wife spent the night in Cleveland after he checked out and took a flight the next day back to California. Other than being very tired when he got home the flight was totally uneventful. All of his followups occurred locally with his cardio and PCP. The bottom line is that you don't need to be away from home for 5 or 6 weeks, you could be home in a week to 10 days if all goes well. BTW...my roomy is doing very well now at 4 months post op.

I have seen on the C.C. website that you can forward your info to them for an opinion about your case. I forwarded my echo and EKG to my surgeons office and he reviewed them without me going to meet with him. Once he reviewed them and told me that he concurred with my original diagnosis I setup a consult to get to the nitty gritty of the type of surgery, valve type, etc.

Hope this helps some...

Scott
 
Scott- Thanks for the information. I am definitely keeping my options open. The thing is, I just learned about my predicament only a week ago, and I need time for all of this to sink in.

This forum has been absolutely invaluable to me. I think that if I can stand back and be as dispassionate as possible, I will be able to make a more rationally considered decision.
 
Some of our members have had surgery at Shands and done well. SRWieland in Florida may be able to provide some information on Shands (and /or other facilities in Florida).

One way to find out more about Shands would be to click on SEARCH at the Top of the Page (in the blue header), type in Shands, go to the bottom of the 'extended search' page and change the DATE window to include a longer period of time so that more records are checked.
 
I went from initial diagnosis to surgery in 15 days total. I had no clue that my issues in the gym were heart related, I definitely feel like I dodged a major bullet. My gradient reading was peaking at 115 and the valve opening measured .9cm so I was told to get after it chop chop or else....
 
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