Has Anyone Traveled to the Cleveland For Surgery?

[Elgato]

Looking into this as a possibility.
Thank You

 

[RobThatsMe]

Yes, I traveled from Nashville to the Cleveland Clinic for my surgery.
What questions do you have??

Rob

 

[RobThatsMe]

Hi Elgato,

Check your private messages in response to your questions.

Rob

 

[McCbon]

I am headed to CC as well to talk to a cardio and a surgeon. Am strongly considering it for surgery.
I would be very interested in your input about the pros and cons of the long trip (I live in Oregon.)
Thank you, B

 

[extraordinary]

Yes I had, traveled long long way …
I just had my surgery 2 weeks ago

 

[Elgato]

Rob,
Thanks for all the info.

If anyone else has traveled a long distance following surgery I would sure like to hear about it.

My big concern is coming home.

Shuttle to the Hotel
Shuttle to the Airport.
Walk to the gate.
Hours in a plane seat.
Plane change in Chicago.
Walk from gate to car.
Ride home.

Are you really well enough to do all this just out of the hospital?

Thanks

 

[Blair]

Hi Elgato,
It's a big concern for me also. The things you listed in your last post are why I've pretty much eliminated Cleveland as a possibility. Maybe it will be easier than I think, but I don't feel confident I'll be up to that much travel. Still, I'm looking at a 5 1/2 hour drive home from Atlanta, which poses another problem for me. I can drive myself up there, no problem, but none of the people that can go with me can handle driving in Atlanta. They are all older and from a rural, small town area. I figure I'll hire a driver up there, who'll get just out of Atlanta to a point they can handle the drive home.

Will be interested in what you decide and your reasons why.

 

[RobThatsMe]

Rob,
Thanks for all the info.

If anyone else has traveled a long distance following surgery I would sure like to hear about it.

My big concern is coming home.

Shuttle to the Hotel
Shuttle to the Airport.
Walk to the gate.
Hours in a plane seat.
Plane change in Chicago.
Walk from gate to car.
Ride home.

Are you really well enough to do all this just out of the hospital?

Thanks

I took a taxi from the airport to the hotel, and again from the hotel to the airport when I returned.
No need to walk much at the airports. You can use one of their courtesy wheelchair services. That is what they are for.
My flight home was a little over 3 hrs total from airport to airport.
Upon return, the courtesy wheelchair service brought me out of the airport exit, and my wife got the car. no need to walk too much.

Also, the hospital will not release you until you are able to walk around some after your surgery.
I do not think anyone should attempt traveling for this alone. A support person, and use of all available assistance resources is something I would strongly suggest.

Rob

 

[Guyswell]

Elgato,

I've travelled twice from Kansas to Cleveland for surgery. It can be done without too much trouble. You'll probably feel tired and weak so take advantage of all the assistance available getting through airports (wheelchair rides, pre-boarding, etc.). Allow extra time for your connection in Chicago so you can take your time getting from one plane to the other without stress. You can do this!

 

[VegasBAV]

I traveled alone from Las Vegas to the Cleveland Clinic for my AVR surgery about 18 months ago (at age 41). I booked a room at the Intercontinental Hotel next door, which is connected to the hospital via a sky bridge. I stayed 2-3 nights before the surgery and had my pre-testing done. Day of surgery, I left my bag with the bellman, walked over to the hospital for the surgery.

Five days later, I was released from hospital, they wheeled me back to the hotel, I walked up to the front desk and re-checked in and had the bellman bring my bag up. Spent two more nights at the hotel, checked out, got a car to the airport, where I was well enough to carry my own (not heavy- 12 pounds?) bag on my shoulder into the airport, walked through the terminal, flew the four hours (splurged for business class) back to Las Vegas. Had a friend meet me in Las Vegas around bag claim and had no problem walking to his car a few hundred meters away. He drove me home, where I live alone.

I hope I don't ever have heart surgery anywhere but the Cleveland Clinic. There's a certain peace of mind knowing that you have chosen the best place with the best odds of success. The nurses and doctors there deal with thousands of heart valve replacement/heart surgery patients every year.

 

[McCbon]

VegasBAV:
Thanks for your description of going to the CC. I also plan to travel pretty far for my surgery there (still in waiting room but have a consult and tests coming up in two weeks.) One thing I am wondering about is if you had any post-op issues and if you took care of it locally or if you traveled back to the clinic? Thanks, McCbon

 

[VegasBAV]

I was in Cleveland for two days after I was released. My heart rate was a little high when I left the hospital so they gave me a prescription for some Metoprolol, as well as painkillers and Lasix. I took the hotel shuttle to the nearby pharmacy to fill those. The nurse practitioner gave me her number and I called her I think the next day because I had a bit of oozing from the wound and she met me in the hotel lobby and gave me some more bandages. I saw my GP a day or two after I got back home, then saw my cardiologist a few months later. No other issues. I was very fortunate though, at least so far.

 

[mustlovepoodles]

I'm really interested in this question. DH has severe mitral regurgitation and has been advised by our local heart surgeon to have a MVR. Complicating the whole situation is that DH has stage 4 lung disease. His lung function is 23%, he's been on high dose steroids for about 10 years, and he has two concurrent, very serious infections in his lungs. The local surgeon is not encouraging; in fact, he says the likelihood of severe complications post-op is very high; he may not be able to get off the vent for weeks, maybe months. DH is really caught between a rock and a hard place.

We sent all his records to Cleveland Clinic. The doctor called us yesterday. He says CC does not recommend MVR because DHs lungs are so compromised. However, he suggested that DH may be a candidate for a lung transplant, during which they could replace the valve. Now we don't know what to think! This has totally thrown us for a loop.

We have an appointment at CC May 15. DH will see a pulmonologist, a cardiologist, and the transplant specialist in one day. IMO, it's worth what it will cost to get their opinions on this, whether we follow up in Cleveland or not. I'm an RN, I fully understand what all this means and it scares the crap out of me! If DH does nothing he will die of heart failure. If he has MVR, he could end up on a vent, contract pneumonia or develop sepsis, or sustain any number of complications. He could live, but his risks are extremely high. If he has a lung transplant, he could live or he could die, but it seems to be the only choice that offers him a shot at life. Or he could die of heart or respiratory failure while waiting for a lung.

 

[Elgato]

Thanks to everyone for their responses to this post and PM’s.
Here is a short summary of my recent experience.
June 02
Arrive, check into the Courtyard Marriot.
The Courtyard is about three miles away with a very accommodating shuttle
service. Fully remodeled, comfortable beds and lots of pillows.
$119 Cleveland Patient Rate which is about half what the Continentals cost.
Disappointed that there was no free breakfast that I have seen in most Marriott’s.
Another good hotel candidate is the Doubletree Tudor Arms for the same price.
If money is no object the on campus Continental hotels are a little closer and nicer.
The Clinic provides Limo service both to and from the airport.
June 03
Chest X-Ray, Blood, Echo, Cardiologist
Dinner in Little Italy. Trattoria on the Hill.
June 04
Meeting with Surgeon
Unscheduled office visit with ENT for ear pain.
June 05
Surgery: All I really remember is OR staff introductions and shaking Dr. Pettersson’s hand before waking up in the ICU.
June 06
Moved from ICU to Step Down
June 10
Discharged to Hotel
June 13 Follow Up. Fly Home
The flight to Tucson was about five hours with time on the ground in Chicago but no plane change. Uncomfortable? Yes, but not painful. Walked the isle about once an hour. Wheelchair is provided from car to gate. The Southwest attendant helped expedite security.

Was it worth it? Absolutely.
Would I do it again? Absolutely.

Why did I choose this route?
Tucson has a metro population of just over a million and has some good hospitals including the University of Arizona. It looked like the rankings here for both surgeons and hospitals ranged from average to good.
STATISTICS:
Down the line the Cleveland Clinic statistics beat the national average by a huge margin with a mortality rate of .6% compared with the national average of 2.4% and the dismal 4% at one of the hospitals here. Do your own research and do not be afraid to ask your surgeon what his mortality rate is.
The sheer volume of heart patients is astounding. On the front end they are extremely efficient and detail oriented. It truly is an assembly line of heart surgery but it is repetition and experience that produces results. The same with the OR staff and surgeons. They do this all day long, every day of the week and have resources far beyond that of a local hospital if something goes wrong.
Recovery:
I have not had an extended stay in a local hospital so I have little for comparison.
The rooms are all private, reasonably sized and extremely clean. Staff attention is just fine and they respond quickly. Cable TV is limited and the food is AWFUL!
I hope to never spend time in another Hill-Rom hospital bed again. Designed by an engineer, NOT someone who has to sleep in it.

 

[Aggie85]

I too traveled to CC for my repairs because needed experts in ACHD (Adults w Congenital Heart Defects) valve work. We came from Wash. DC area, about 7 hr drive. I didn't seem to have as smooth a go as many of you on here. Thought of trying to drive home, much less fly, anytime that first week would've been daunting. I was kept in hospital 10! Days Post-op because we couldn't get my INR to consistently stay up, let alone in range. I was grateful to NOT be discharged on day 5 as I didn't feel AT ALL capable but will admit by day 8, I was climbing the walls. Still not up to much but definitely stir crazy and dying for non-hospital food.

Part of reason for delay was because of their concern about the distance I was traveling home. They weren't willing to discharge me even to hotel until my INRs were up and even then wanted me to stay in area. They told me if I'd been flying, they'd want me to stay in area for two weeks postop before flying.

Maybe all of this difference is because of the types of surgeries. Also maybe longer recovery is because this is my fourth OHS, even if previous 3 were 40+ years ago. Even with that recovery, the sternum's still been cut 4 times and there's lots of adhesions.

About CC experience: I give them an A+ with only real complaint was the food as well. Partly because of being put on that bland heart healthy diet until I convinced nutritionist to advance me to regular. And partly because I ended up in there over Mem. Day weekend when all the ancillary cafeteria places closed down in the hospital, so no alternate food sources. But, I must also comment, our complaints may not all be their fault. I KNOW my taste buds were NOT working correctly. I couldn't smell and my tongue had gotten BADLY lacerated by the NT tube so had to use lidocaine and a foul tasting mouth rinse before I ate, that had to affect how things tasted.
FOOD RECOMMENDATIONS : the fried tilapia is very good as is the Turkey with green beans and cranberries. About only two dishes I can recommend and both on the heart diet.

Yes, this is a heart surgery by the numbers place, but I for one appreciated having ALL the testing and services in ONE place. Not having to run all around for the various tests we have to have. I never once found anyone not friendly or treating me like a number. They kept me informed when there was a delay and what was going on (waited 5 hours! For my visit with Dr. Pettersson because he was delayed in surgery). I did wish, we'd been able to go back to my hotel for that long wait, but none of us knew the delay would be THAT LONG. With as long a stay as I had, needless to say I got to know EVERYONE on the floor, from the custodial staff, all the new hired PCNAs, Nursing and Dr. staff. I was incredibly impressed with the rigorous hiring process for all these people (talked with folks shadowing or training) CC really takes seriously who the hire for ALL their staff, not just the surgeons and Dr.s . I think that's part of what explains the rep they have, not just the sheer volume of cases they do.

Hotel recommendations: "We" stayed at the Comfort Inn down on Euclid. $89 CC rate For two room suite, free breakfast and free shuttle to CC. Definitely, NOT a high end hotel. Halls smelled musty. BUT the rooms were very clean, not musty smelling, well kept. Breakfast was a hot buffet. Not fancy, but ok. Shuttle service to hospital was exceptional. They ran every hour and would have night guardsman take you personally if you had a early morning Pre-op call, or other emergency.

Best wishes for recovery to all of us in recovery and prayers to all looking forward to surgery. And of course....
HAPPY FATHERS DAY TO ALL THE DADS OUT THERE!
Linda

 

[DebbyA]

I was wondering what you'd decided to do. It seems your surgery went well and the CC met your needs. Best wishes for a smooth recovery!

 

[AZ Don]

Glad to hear all went well. Where did you find the Hospital mortality rates?

 

[McCbon]

So glad all's well and you are happy with your choices. Thank you so much for sharing your perceptions of the clinic. Dr. P was your surgeon: so who was your cardiologist at CC or did you just have a local cardio? If you had one at CC what was your opinion? How did your family feel
about their experience?
I am glad to hear any info on CC as it is one of two considerations for my surgery. I am due in 6 mos or a year. Thanks again and be well.
Mcbon

 

[Nupur]

Congratulations, Elgato on your successful surgery. Your story is encouraging and comforting for those in the waiting room. I want to choose CC when my time comes. I was even thinking of flying there once to have a consult well in advance so they have me on file (a little detour from our yearly trip to Chicago to see family). When you got back, did you have a follow up with anyone? In case of any post-op issues like Afib (which hopefully you don't get) would you just go to your local hospital with your CC records for surgery?

 

[Aggie85]

McCbon, I too had my surgery at CC (see my prior reply for other comments) and wanted to address some of your questions from my perspective. I had Dr. P as well. My first impression was not good. At my PreOp visit, the day before my surgery, he had NO clue who I was (didn't even know I was scheduled first thing the next morning), was rude and dismissive. I'm VERY glad I didn't let that first meeting put me off to him! As I mentioned in the earlier post, he had just come out of a grueling OR shift that was 5 hrs later than intended, so had to be exhausted. We decided that we were hiring him for his expertise, not office manners. BTW the next two times I saw him (in OR and PostOp) he was much more congenial and knew exactly who I was.

My family (my husband and my mom) had very good feelings about how they were handled during both my procedures (Cath and surgery). They were kept informed as to what was going on and were never made to feel like they were in the way when coming with/ or visiting me in the OR holding area, in the ICU, or on the floor. There times they were asked or encouraged to leave while procedures were being done (pulling out my chest tube, central lines, etc) but if they had wanted to stay (HAHA, hubby is extremely squeamish!!!) they could have. They were escorted by a staff member to a waiting area just outside ICU and someone came back to get them when all was done. There was an incident when they were visiting when I suddenly escalated to beyond a level 10 pain level. They had just left to show a friend the roof top terrace, when I suddenly had a pain problem. When they got back to the room there were XRay, ECHO, EKGs and Drs. all over me making sure I wasn't having an issue from my pacing wires being pulled out a couple hours earlier. My family was stopped at the door by my nurse, who told them what was going on, why everyone was in my room and reassuring them that it looked like I was OK but that they wanted to be sure and what was being done for my pain. She was calm, professional and very reassuring to both myself and my family.

Something that may not get much attention here, but could be relevant. CC is also very cognizant of the beliefs and traditions of other cultures. There are many Middle-Eastern people who come there for treatment. While I was there, there was a female patient who required all female attendees or chaperones when male Drs were required. The staff, from what I could see, were very accommodating to the family's wishes and needs and treated it like a common occurrence. They provide translators as needed and strive all they can to help their patients and families.

The only problem I had was the lack of Catholic Chaplains. They are provided by the Diocese and apparently all have Parishes so are limited in their time available to meet patient and family needs at the Clinic. I ended up having a Protestant Chaplain give me a blessing before surgery when I would rather of had an anointing for the sick be done by a Priest. I was very grateful for the Chaplain's spiritual support but thought it odd. Amusingly, my Parish Priest had also not done the anointing just before I left for CC because he said it was too soon (anointing for the sick has a time limit???) and said to have the hospital Priest give it to me while I was there.

My cardiologist at CC was Dr. Krasuski but he's a specialist for ACHD (Adults w Congenital Heart Defects) so you may not have him. He was great but other than PreOp and the Cath, I never saw him. Dr. Ps staff kept in constant contact with my local (here in DC) Cardiologist and sent him updates and all the discharge info. He seemed very pleased with what they provided him. I plan to do most of my followup with my local Dr. But may go back up to Dr. Krasuski for a yearly followup or if any problems arise. I will say, make sure you have email and phone contact information for your local cardiologist and Primary Care Manager (regular Dr.). CC will ask you repeatedly for it, even if you already gave it to them in the Pre-Registration phone interview.

Best of luck!
Linda