It may help you to focus on how lucky you are to have a surgical option. I count my open-heart surgeries as blessings rather than burdens. If we had been born 100 years earlier (or into crushing poverty in some 3rd world country) there's nothing that could have been done for us. We are so blessed to have been born in this place and time. If it's time for surgery, embrace the opportunity to fix the problem and go on with your blessed life. Carpe diem!
Tormented over where to go for surgery--Charlotte, NC or Cleveland/Mayo Clinic
- Thread starter HopefulHeart
- Start date
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Rachel
Well-known member
Seriously - you're lucky to have known about your aneurysm in the first place! This is a silent killer - I had one (5.2cm) - and I had NO idea - mine was caught by a fluke!
Hi HH,
I had my aortic valve, aortic root, and ascending aorta replaced at Duke Medical Center by Dr. G. Chad Hughes. Duke is ranked as the 6th best heart hospital in the country and is only about a 2 hour drive from Charlotte (give or take depending on traffic). The link below is Dr. Hughes contact page at Duke. I highly recommend Dr. Hughes as a surgeon and Duke as a hospital. Part of the reason I chose Dr. Hughes is because he specializes in ascending aorta repair as well as aortic valve replacement. Good luck with your surgery wherever you decide to have it.
US News Heart Hospital Rankings: http://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery
Dr. Hughes Bio / Contact Info: http://surgery.duke.edu/faculty/details/0066100
HopefulHeart
Well-known member
You are right! To be able to have this repaired through surgery is truly a blessing. Something that my relatives with this same genetic defect did not even have as recently as the 1950's. They lost their lives to this.
HopefulHeart
Well-known member
Yes, I am lucky to know about it. I count that as a wonderful blessing. Glad that your aneurysm was found and repaired.
charlottekaye
Well-known member
Hello!! I have not been on the forum in a long time. I read your question, and the thread - and, the whole time I was thinking: "why doesn't he go to Duke?!?"
Aggie85
Well-known member
Just to add yet another thought about going a long way for surgery. It's easy to get there, not so easy to get back. If you fly, they want you to wait two weeks postop to do so. That means two weeks in a hotel, not comfy home. Two weeks eating out, etc..... If driving, it's a slow, painful drive and again they want you to wait a couple days before leaving the area, depending on how soon they discharge you. Thirdly, coordinating things like post op followup and Coumadin clinic care can be complicated by distance.
I speak from experience. I HAD to go to Cleveland Clinic (had choice of CHOP-Children's of Philedelphia and CC) because my repair was for an Adult w Congenital Defect (ACHD) and pulmonary valve, not common aortic. I had to have a Dr. with lots of experience with adults with heart structures that were all wrong. When I first was led to Dr. Pettersson, I looked at his credentials and thought, WOW, I don't need someone of THIS level, I shouldn't be taking his time, for my repair. Yeah, kinda opposite of many folks thinking. I talked to his RNP to ask about this. I was comforted by her saying if I had a standard AVR repair, no need to come to them as there are many well qualified Aortic surgeons around the country, but my situation was indeed unique and I needed someone on Dr. Ps level.
So from DC to Cleveland we went. I ended up in hospital for 10 days postop because we couldn't get my coumadine level up to range. Because of the distance I was traveling home, they didn't feel comfortable releasing me until I'd reached and stayed at level for two days. They needed me there 5 days early to do their own testing (CT, Cath, ECHO, etc...) as well. That all added up to nearly THREE WEEKS of hotel and eating out bills for myself, hubby and Mom. ChaChing. I don't begrudge the money AT ALL but it can be a factor because that part of expense is not covered by insurance.
Then there was the trip home. Luckily, we have a mini-van and opted to use that for the trip, despite hubby wanting his gas efficient Prius. Even, now, 4 weeks post, I can hardly tolerate riding in the Prius for 5min. For some reason, the vibrations of the car sends my sternum into hyperdrive of PAIN! Ten days postop drive home, was very tiring and slow. I could only tolerate about 4 hours in car, taking Dr. recommended stops every hour for a break to stretch legs to prevent clots. We ended up doing the 7 hour drive home in 2 GRUELING days. HINTS: take biggest vehicle you have, better suspension helps a lot. Extra pillows to cushion chest and to lay on in the car seat. They also recommend sitting in back if you can't turn off air bag. (I can't do this as the back made me car sick within 5min, but we put the front seat as far back as possible and pray we don't end up in car wreck that activates the air bag.)
Anyway, IMHO, Duke is close enough for excellent care and not too far for troubles getting home. If circumstances require the high expertise of a place like Cleveland by all means go, but realize there are issues with the return trip.
Best wishes on your decision, surgery and recovery!
Linda
I speak from experience. I HAD to go to Cleveland Clinic (had choice of CHOP-Children's of Philedelphia and CC) because my repair was for an Adult w Congenital Defect (ACHD) and pulmonary valve, not common aortic. I had to have a Dr. with lots of experience with adults with heart structures that were all wrong. When I first was led to Dr. Pettersson, I looked at his credentials and thought, WOW, I don't need someone of THIS level, I shouldn't be taking his time, for my repair. Yeah, kinda opposite of many folks thinking. I talked to his RNP to ask about this. I was comforted by her saying if I had a standard AVR repair, no need to come to them as there are many well qualified Aortic surgeons around the country, but my situation was indeed unique and I needed someone on Dr. Ps level.
So from DC to Cleveland we went. I ended up in hospital for 10 days postop because we couldn't get my coumadine level up to range. Because of the distance I was traveling home, they didn't feel comfortable releasing me until I'd reached and stayed at level for two days. They needed me there 5 days early to do their own testing (CT, Cath, ECHO, etc...) as well. That all added up to nearly THREE WEEKS of hotel and eating out bills for myself, hubby and Mom. ChaChing. I don't begrudge the money AT ALL but it can be a factor because that part of expense is not covered by insurance.
Then there was the trip home. Luckily, we have a mini-van and opted to use that for the trip, despite hubby wanting his gas efficient Prius. Even, now, 4 weeks post, I can hardly tolerate riding in the Prius for 5min. For some reason, the vibrations of the car sends my sternum into hyperdrive of PAIN! Ten days postop drive home, was very tiring and slow. I could only tolerate about 4 hours in car, taking Dr. recommended stops every hour for a break to stretch legs to prevent clots. We ended up doing the 7 hour drive home in 2 GRUELING days. HINTS: take biggest vehicle you have, better suspension helps a lot. Extra pillows to cushion chest and to lay on in the car seat. They also recommend sitting in back if you can't turn off air bag. (I can't do this as the back made me car sick within 5min, but we put the front seat as far back as possible and pray we don't end up in car wreck that activates the air bag.)
Anyway, IMHO, Duke is close enough for excellent care and not too far for troubles getting home. If circumstances require the high expertise of a place like Cleveland by all means go, but realize there are issues with the return trip.
Best wishes on your decision, surgery and recovery!
Linda
joanie
Active member
I chose to go to Cleveland for my surgery and I don't regret it at all. Unlike what Aggie said above, I flew to and from Cleveland - my return flight was 2 days after I was discharged from the hospital and I could have flown home the day of discharge if I had wanted. (I was a bit scared to leave the cocoon that is CCF!)
If I had had my surgery at home, my cardiologist tells me I would have had a full-sternotomy - not the 3-inch minimally invasive procedure I got at CCF. That's the difference between a hospital where my surgeon does 2 valves (or other complicated open hearts) a day vs. a place where, other than by-passes, a surgeon does one a week, or even less. My local hospital (which is not tiny) also does not have the high volume that makes CICU and step-down run like a machine.
I think it really depends where you live what the local resources are like. Do your homework. For me, traveling for surgery was the best option.
If I had had my surgery at home, my cardiologist tells me I would have had a full-sternotomy - not the 3-inch minimally invasive procedure I got at CCF. That's the difference between a hospital where my surgeon does 2 valves (or other complicated open hearts) a day vs. a place where, other than by-passes, a surgeon does one a week, or even less. My local hospital (which is not tiny) also does not have the high volume that makes CICU and step-down run like a machine.
I think it really depends where you live what the local resources are like. Do your homework. For me, traveling for surgery was the best option.
Aggie85
Well-known member
I think Joanie has a good point that needs to be emphasized... Recovery and travel are greatly be affected by what kind of surgery you have (full chest cut or Mini) will greatly affect travel plan outcomes. Clarify which options you'd have at each place and how long a recovery they expect. I suspect the estimates given to me by CC was because of the complicated nature of my repair (a 5 hr surgery instead of the originally planned 3hr) and my 4th OHS. Many folks on here have traveled very soon and easily after their surgery and others, like me, needed much more time. I couldn't IMAGINE traveling at the 5th postop day and found traveling by minivan at even the 12th PO day was grueling!
I think I remember you're contemplating Duke as well, all are excellent so IMHO I don't think you'd go wrong at any of them.
Best of luck!
Linda
I think I remember you're contemplating Duke as well, all are excellent so IMHO I don't think you'd go wrong at any of them.
Best of luck!
Linda
