Selene's Posts

Hi Selene, I can answer some of the logistics question but my surgery isn't til March. We've gone up twice this year. We flew Southwest but pretty chaotic. For surgery I will fly Delta and am considering First Class (first time) as Pam did. The best hotel is an Intercontinental attached to the CC heart center. Walk back and forth in minutes. Ask for patient rate. It is an extra expense but comfortable, convenient and good food onsite. There are a couple hotels on the edge of campus, I think there is a shuttle and they are less expensive. All the tests are scheduled ahead, it is a well oiled machine. Others will jump in about procedure. You cannot go wrong with Gillinov.

My wife and I traveled there in March for an open aortic and mitral valve redo of a failed tissue valve replaced here in Oklahoma. An incidental finding of a CT December 22 revealed aneurysms throughout her aorta. That's why we traveled to Cleveland, too complex for surgeons here in Oklahoma. She had an open arch repair along with the valve redo. We were there a week prior to surgery and three weeks post op. We drove the 1,000 miles. Stayed at the Residence Inn Cleveland Clinic. Good location, about two long blocks away. I usually drove over daily, weather wasn't great to walk. We returned in June for a follow up and then again in July for and EVAR of the descending thoracic aorta. That time we were there one week prior and two weeks post op. Again we drove. Mainly because we didn't know how long we'd be there and wanted to have a car available. We broke up the drive in to 3, five hour sections. Stopping to see family in Indiana along the way. We also don't pack light, so it was good to have extra room. We return next week for a follow-up and for the first time we are flying. Again, staying at the Residence but renting a car since we'll be there over the weekend between appointments. The InterContinental Hotel a IHG property is the closest hotel and a part of the Cleveland Clinic campus, if you didn't want to have to drive over daily and valet or park yourself it's a viable option but a little pricier. I understand they have a concierge that can arrange for shuttle to and from airport. My wife hates flying, but after 3 round trips driving the last 9 mos, she finally agreed she can handle it this time. The surgery in March being such a major procedure, we had no idea if we were making a mistake driving and had back up plans to fly if needed. After 11 days in ICU and 10 days in step down, her post op pain from the open procedure was manageable driving. The distance is tough. She wouldn't travel there in 2017 or 2019 for her original heart valve procedure and subsequent ascending aortic aneurysm. Her tissue valve failed in 2020 and she underwent TAVR then her mitral tissue valve failed in 2022 so she finally agreed to travel. In hindsight, we should have traveled for the first procedure. She doesn't like travel in general and didn't feel comfortable traveling until she had no choice. You have to have a plan for follow-ups at home, so hopefully your cardiologist is supportive of your decision to travel and will see you post op as needed. We had to find another cardiologist after returning from Cleveland, and luckily I had some contacts, and she's happy with her new local Doc. Also, cardiac rehab at a local facility you'll need to arrange.

Hi Selene. Dr Gillinov repaired my mitral and tricuspid valves in November of 2021. I too was terrified of the surgery. I was a little older when I had the surgery (69). We were able to travel by car from the Pittsburgh area, so we didn't have the air travel issue. We (my wife and our son) stayed in an AirBnB for 9 days. I had three days of outpatient testing. Surgery was on Thursday and I was released the following Monday. I found the surgery and recovery much easier than I expected. I was fortunate that I had no complications; I needed only Tylenol for pain relief by Sunday. My recovery was much better than I expected. You can expect to have a lot of fatigue but not a lot of pain. The Cleveland Clinic is one of the top centers in the world and Gillinov and his staff are outstanding. I wrote a fairly detailed account of my whole experience in my journal. Feel free to ask anything here - everyone is very knowledgeable and supportive. Good luck!

Hi Selene. I traveled from DE. It is about a 7 hour drive which we did before and since surgery, but they recommended flying after my surgery. My husbands sister lives 30 mins from the Cleveland Clinic. We were extremely fortunate to have them open their home to us for recovery. I was in the hospital for a week after AVR and Aortic root replacement , released for 2 days, then readmitted for fluid around my heart. Had to have a drain inserted and stay another 5 days (blood transfusion too because my blood work was crazy and kidneys not very happy). So after 2 weeks, I stayed at my Sister in laws for 5 days then flew home First Class. I didn't want to worry about people and luggage running into me. They let you board early if you let them know. Also we got a wheel chair from the airline to get right through security and after the flight too. I could walk fine but wasn't sure how much standing or walking would be involved. I definitely recommend the wheel chair. I walked a good bit once we got to the gate and coming from FL you will want to check and see how often to get up and move during the flight. Our first trip there we stayed at the CC Holiday Inn. They give a special rate if you tell them why you are there. It is only a few blocks with no turns away. They have a shuttle to CC too. Not fancy but clean and convenient with some food downstairs. If you have any questions at all please do not hesitate to ask. Good luck with your decisions❤️

Hi Selene, I had OHS via Sternotomy Mitral Valve Repair with Dr. Gillinov at Cleveland Clinic 11/17/2022 just had my 1 year anniversary. I am from Salt Lake City, Utah and traveled to Cleveland Clinic to get the best, and that proved to be the case. I was in the hospital 5 days, stayed in the Intercontinental Hotel next to the hospital, it is 1 of 3 hotels next to the hospital, they will pick you up in a limo at the airport and take you back to the airport when you are discharged, they like you to have a follow up appointment 2 days after discharge. No problem flying. CC has a Concierge service that are very accommodating and can help you make all the arrangements. You have made the right decision, you are going to the best of the best both surgeon and hospital, you can be assured you will get the best possible outcome. I may have duplicated what others said , I haven't read all the post. Contact me if you need any other information.

Hi Selene. Dr. Gillanov did my mitral valve repair on Feb 24th, 2023. I cannot tell you how terrific Cleveland Clinic people are. We traveled 4 hours (central PA) and I had some complications during my surgery - my heart, not the surgeon . We were so thankful we had gone to CC especially because of the problems I had. I was in for 9-10 days and I had an ICD implanted two days before going home. The ride home was actually not bad, we even stopped in Pittsburgh and had dinner. Which I can't believe I did that looking back! You are in the best of hands, no doubt. I hope all goes/went smoothly!

I traveled for my surgery and I flew first class and chose the seats in the first row for extra leg room to stretch out. I also requested wheelchair assistance to the gate on my return trip. I was capable of walking but this was a great choice for not getting overtired traveling post surgery but also allowed me and my family to bypass the security lines which was wonderful.