Travel for surgery questions

[leecrowley]

Hello to everyone,

I've been cruising these boards for a few weeks now, and this is my first post. I am a 37 year old male with a BAV, which is believed to be congenital. I was diagnosed 2 years ago with severe AI. At my yearly ECHO last month, it was discovered that my Ejection Fraction has decreased significantly over the last year. I am generally asymptomatic. I've had 2 cardiologists suggest valve replacement within the next 3 months. To make things more complicated, my wife is due with our first child in 2 1/2 weeks. It's going to be a busy few months at the Crowley household.

I had a catheterization on 4/28, and my coronaries are very clean, which is good news. I also met with the surgeon my cardiologist suggested after the cath. Although I believe him to be a very competent surgeon and have faith he'd do a good job, I am weary of the fact he only does about 50 valve replacements per year total. That means it's even fewer per year for BAV, which I understand to be a more complicated surgery. My instinct is that his number of surgeries per year is not higher because there just aren't enough people in Tulsa that need this surgery on a yearly basis compared to the number of cardio surgeons. Since I feel a little apprehension about this, I've almost come to the decision to try to find a surgeon in Dallas that has performed many more of these surgeries.

So, my first question is........anyone have any suggestions for cardio surgeons in Dallas?

My second question (or questions) is regarding the logistics of travel for the surgery. Dallas is about 265 miles from Tulsa, so it is driveable in less than 5 hours. For those of you who travelled to a larger city for your surgery, I need some general information about your travel experiences. I'd like to get an idea about how many times you had to travel to that hospital pre-surgery.....how soon before the surgery did you go........did you travel home immediately after being released from the hospital........did you have family members stay in a hotel close to the hospital........and many more things that I know I am not thinking of.

I'm sure there are other concerns involved with travelling. Any other suggestions or tips would be greatly appreciated.

These forums have been a God-send. They have been very helpful in helping me and my family believe that many, many people make it through this scary experience.

Thank you to everyone.

Lee

 

[mtkayak]

Hey Lee,

I'm new to this board as well. This is my first post. I just had Tricuspid Valve Replacement. I was in a similiar situation where I had to travel out of state as well. I live in Atlanta and traveled to UAB in Birmingham, AL to have my surgery done. I was not comfortable with the surgeon in Atlanta performing my surgery either as he only had 2 years experience and 60 operations under his belt. Very nice guy and competent but even he admitted that he limited experience with my procedure. He said the operation would take 6 - 7 hours which I didn't like. I shopped around and found Dr. Albert Pacifico in nearby Alabama. He had 40 years experience and performed about 5 surgeries a day so he has seen it all. It only took him 2-1/2 hours, less time on the heart lung machine and everything went smoothly. I'm very pleased with the result as I'm almost 7 weeks post op. I was out of the hospital in 3 days and back at work in 4 weeks. When you have surgery out of state the surgeon usually sends all your medical/surgical records to your local cardiologist for post op care elimating any future travel. I was able to be driven home in a car with my mom 3 days after surgery but it was only 2 1/2 hours for me. I know you are allowed to travel by car or plane.

In summary, it really pays to get second opinions and shop around a little. You can have your medical records from your cardiologist mailed any where in the country for a surgeon to review and accept your case.

Hope this helps. Good Luck with your surgery, you'll do great!

Mike

 

[catwoman]

Lee:

Sounds like you have some busy months ahead. Congratulations on the upcoming arrival!

Tulsa is not that far from Dallas. On your return home, you would need to stop once, maybe 2-3 times, to stretch your legs and keep the blood flowing pretty good.
I go to Tulsa a couple of times a year and have a trip there planned for June 2-4.
I'd suggest the US 75/69 route rather than taking I-35 to OK City and then the turnpike home to Tulsa. It's easier to pull off the 75/69 route since it's not on an interstate, other than a stretch on the Indian Nation toll road. Pulling off an interstate is a pain.
(It's also fairly cheap to fly between Tulsa & DFW or Love Field.)

I live west of Fort Worth and chose to have surgery in Dallas, rather than in Fort Worth. I was in the hospital for 1 week, then stayed with my parents for 2 weeks post-op (their insistence). I had I think 2 post-op visits to the surgeon and my dad took me to the appointments.

There are a number of very good surgeons in Dallas -- at Baylor, Presbyterian, Methodist. Some of us here have had surgery at those hospitals, dunno if anyone has had VR at Medical City or St. Paul.


I think you're smart in wanting a surgeon who does quite a few procedures a year.

 

[pfsinger]

My PVR surgery is scheduled at Mayo in Rochester, MN for July 14. On July 12, I have testing and meet with my cardiologist. On July 13, I meet with my surgeon (whose specialty and main area of interest is valve replacement). On July 14, I check into St. Mary's Hospital at 8:30 AM.

I live about 1 1/2 hours from Rochester. Even with that small of distance, I have reserved two hotel rooms for the week I'm in the hospital for my husband (who will be there the entire time) and my son, and my parents and sister and grandma. They won't all stay the entire week, but they have the option to. I think my mom will be there the entire week.

On my way home, I haven't decided if I will ride in the back of my parents' minivan, or in my car with my hubby.

Congratulations on your upcoming baby's birth! That's so exciting!

 

[Mary]

Many hospitals in larger cities have rooms available at the hospital for family to stay. We reserved a room in advance, and my husband slept there until I was released. Since it was on the hospital grounds, it was very convenient. I think the cost was $55 a night.

 

[Lynlw]

congradulations on the upcoming birth. it is a busy time for you guys that's for sure. I don't know if anyone mentioned it But have you talked to your insurance company about where you would be coverred for surgery?
I can't really help you w the other questions, since we are lucky enough to live close to Justin's doctors, Lyn

 

[Superbob]

Accommodations

Accommodations

Lee,

Good luck with your preparations --- and of course with the upcoming birth of your first child. That is exciting! (Just had the birth of our first grandson last week.)

Though I lived just 25 miles from the hospital where I had my surgery, that might as well be 125 miles away n Northern Virginia/DC. So I got a room at a hotel a mile away for my wife and myself the night before I had to report for surgery at 6 a.m.. and then kept the room for the rest of my hospital stay for my family's use. I didn't want my family going back and forth fighting the DC commuter traffic at all hours. And by no means did I want to be stuck in stress-inducing traffic on the morning of my surgery.

As Mary said, many large hospitals have special patient/family rates at facilities very close, sometimes even on hospital property. Inova Fairfax had some on its own property that were in walking distance, and also had other deals with nearby hotels with shuttle service to the hospital. The website of whatever hospital you choose most likely will have the details.

Best wishes,

Bob

 

[mmarshall]

hey lee....go see dr. william ryan at presby of dallas. there are members here that have had surgery by him and have all had a great experience with him. being in tulsa you can probably have your cardio send his office your test results and he can talk to you over the phone about what he recommends/would do. he is very easy and understanding to talk to. let me know if you have a specific questions.

 

[Der Biermeister]

Bob - I can appreciate what you are saying about the NoVA/DC traffic, etc. Both my kids live up there (daughter in Reston, and son in Ashburn) -- and that was a good idea for you to rent that hotel room.

Down here, I live about 30 miles from the hospital, but it was pretty easy for my family to drive back and forth from the house -- plus they had to take care of the dogs, etc.

Mike -- Addressing the surgery time --- wow 2 1/2 hours is FAST, but it must have been a simple (simple??? not the best choice of words - LOL) valve replacement with nothing else. I was in surgery for 5.5 hours with my AVR, but they also did a quad bypass. My wife thought I was on the table for like 7 hours because it was 3 PM before they wheeled me up to the CCU. I'm thinking they kept me in some kind of post-op room. If I could be objective, I would have to say that I am progressing well at home. I hit 3 miles walking last week and am going to stay at that distance for awhile. My lung capacity is also improving - hitting 3000 ml now on the inspirometer. Just wish I could shake the low-grade temp once and for all.

 

[Phyllis]

Lee,
I fully support your desire to seek out a surgeon with more experience. Dick did the same and opted for Dr. Cohn in Boston which is two hours from our home. We visited the cardiologist there once, he set up the surgery with Dr. Cohn. We drove to Boston on a Tuesday for Pre-op tests, he had the catherization on Wed. was admitted that day and then operated on a Thursday- home on the following Monday. I stayed at a nearby motel (the hospital had special rates available at a number of nearby motels). The two hour drive home was fine with one stop to stretch the legs. Many people on the forum have traveled much further and by plane to the hospital and surgeon of their choice. It is all doable. Hope this helps and best wishes,
Phyllis

 

[mtkayak]

Yes, it was simple valve replacement, all the great vessels checked out good. The right ventricle was not as enlarged as they thought it would be either. Dr. Albert Pacifico told me it would take 2 1/2 -3 hours before surgery barring any hidden suprises. I researched this Surgeon for awhile. In his prime, he use to perform 16 surgeries a day, now he's down to 5 a day, he does something like 1200 a year. He is a master of surgical techniques. He studied under the great Dr. John Kirklin, developed and refined the heart lung machine.

Glad to hear your doing great at home. 3 miles is great, keep up the good work. I think exercise is the key to a speedy recovery. The heart loves those long walks. It only gets easier as the weeks go by. I'm started doing 5 miles a day. I feel great!

 

[dj/utvolsfan]

Hello!
Let me join the others in congratulating you on the precious bundle of joy about to join your family. How blessed you are!
I'll be more than happy to answer some of your questions.

Wednesday February 1 - I drove from Huntington, WV to Cleveland, OH after a day at work. About a 5 hour drive. Arrived at Holiday Inn. Regular rate at the Holiday Inn was $134. CCF rate was $68...there are perks!

Thursday, February 2 - Took the shuttle bus to Cleveland Clinic. Had bloodwork, ekg, x-ray, echo and the all important appointment with Dr. Stewart (diagnostician) Found out I needed surgery sooner than later.

Friday, February 3 - Used shuttle once again. Had the Catherization. Was hospitalized over night cause I was very nauseated and also by myself. Somehow I was able to get through to the Holiday Inn and didn't have to pay for Friday. I am pretty sure one of the nurses helped navigate that conversation for me.

Saturday, February 4 Holiday Inn shuttle picked me up from CCF and I was able to pick up car from their parking lot - Drove home. Way too soon after catherization. Was pretty miserable. Also felt really exhausted and had a hard time staying awake for the trip home.

Even though I made it through those days at CCF by myself (never had been there before) I wouldn't recommend that route unless you just have no other way.

Surgery scheduled April 5

Left Huntington WV Sunday , April 2 - Back at the same Holiday Inn.

Monday, April 3 - Shuttled to CCF. Had pre-op appts. Same routine. Echo, ekg, bloodwork, x-ray and consult with Dr. Stewart's nurse. Also had big meeting with anesthelogist. Watched 'what to expect' video. Q and A time. Had nose swabbed for staph infection. Tested positive. Had to run to the pharmacy to pick up ointment. Was given the bathing formula and all the pre-op info.

Tuesday, April 4 - Shuttled to CCF for 8 am appt with surgeon. Waited from 8am to 4 pm before seeing my surgeon. Many. many delays. Was able to meet several people (patients and families) who played an important part in my recovery as it would turn out. Good things come out of frustration many times!! My sister arrived from PA. My dad and his wife arrived from FL,WV. Met surgeon. Meeting lasted 15 minutes at most. I felt he was stressed to the max from a day of one emergency after another. Surgical director of lung and heart transplants at CCF. World renowned. He's a busy man.
Tuesday evening - Received a call from surgeon's office. Surgery postponed one day.
Wednesday, April 5 - Original surgery day - Sister and I hung out at the Rock and Roll Hall of Fame. Had a great family day. Received another call from surgeon's office. Surgery delayed from round one to round two.
Thursday,April 6 - arrived at CCF at 10. Was dressed and ready to go at 1:18 to be exact. Last time I looked at clock in surgical suite was around 2:04. Shivers.
Woke up sometime Thursday but don't remember a whole heck of alot except the blasted vent.
Friday, April 7 - Removed from ICU around 8 pm. Arrived in room around 10 after 2 hours out in the hall somewhere cause there was no room at the inn.
Sat, Sun - recovery continued
Monday, April 10 - was told I could leave if I was ready. Cause my daughters were not able due to college commitments (nor did I think I was physically able either)

we opted for discharge on Tuesday, April 11

Drive home started at 6:30 pm after sitting in discharge lounge since around 10:00am. Kids had Jeep loaded down with blankets, quilts, pillows, bed wedges, drinks. I was in the middle seat. I was as snug as a bug in a rug. They had pillows piled up in the entire foot area so high that I could not possibly fall off the seat. After about an hour of laying down, I was so excited about seeing them again and catching up that I sat up during the entire rest of the ride home. We stopped every hour on the hour and walked. They mainly had to hold me up when we walked. One on each side of me and their arms around my waist and my arms around their shoulders.
Somewhere in the middle of the ride home, I had to use the restroom so the three of us headed into the closest gas station. We must have been a sight to see. Here I am looking completely like a drunk on the worst binge and the kids looking like this was the only way they were going to get a free drink of liquor or something. None of us will ever forget it. We scooted in there in our usual interlocking selves and as soon as I smelled the place I just yelled out "I can't do this place." Smelled like a very popular bar in the middle of a cigerette smoking contest. It literally took my breath away. Felt so suffocated. We shuffled back out to the car and one of the kids looked back to see about 2 or 3 people staring us from the door...probably wondering what the heck just about happened. The ride home was uneventful Much easier than I had anticipated. No pain. Had only an advil at 10 that same morning. Arrived home around 12:45 or so in the early morning. Took an advil cause my neck and shoulders were tight from protecting my chest.
I honestly didn't mean to be so mouthy. Sorry this is what happens after being off work for so long. I apparently am not getting enough conversation. Take care, good luck with the baby and with your heart! It will all be just fine!
Debbi

 

[dj/utvolsfan]

One more thing. One of the very sweet ladies on this website (GeeBee) sent me a link of hotels in the Cleveland area. I was able to pick and choose from dozens and dozens of possibilities running the entire spectrum of full service on-site hotels to hotels miles away with and without CCF shuttle service and discounts.
My sister and I shared a room...nothing like bringing back good ol memories and my dad and his wife were in the room right next to us. We were all pleased with the hotel we chose. They stayed on there for a few more days. I think it generally took us about 8 to 10 minutes to get to the Clinic. The shuttles run at scheduled times. The last day - wouldn't you know it - I was heading off for surgery and there was no shuttle. Emergency pickup at the airport I believe. Fortunately, the Holiday Inn called a local taxi company and I was able to proceed as planned on time. Holiday Inn paid for the taxi.

 

[Marguerite53]

Hello and welcome to our wonderful community. You have gotten some great responses! My surgery was 2 weeks ago, tomorrow. I'm 52, but our conditions sound similar. I did not have to travel outside our metro area, but had I not had 10+ top local surgeons to choose from, I'm sure I would have gone out of town. Your quest to find a more experienced surgeon is wise. I had a "textbook" event, comparably small (5") incision (much less healing pain, I suspect), and less than 4 hour surgery (70 min. on heart-lung machine). DO get yourself an experienced surgeon.

I do have some concerns about your wife. I have 3 grown children and I distinctly remember being delightfully "high" on adrenaline for the first 2 months (easy labor) and then crashing to near exhaustion from 2 - 4 months post partum. The nursing drains you, people's help has somewhat come and gone, the baby is demanding more and sometimes sleeping less, etc, etc.. So, in all of your calculations, please think of her and how the stress on HER will be double -- her concern for you -- her physical demands from the care of the child. In other words. Please think about travelling with a 3rd adult, if your wife goes with you. She will need the help. That said, what could be more uplifting on the cardiac ward than a bouncy, beautiful, healthy brand new baby??? He or she will be the apple of everyone's eye (you may get jealous!!)

Just my 2 cents. Congratualtions, by the way. Now that you've joined our "family" you'll need to keep us updated on the baby, too!!

Marguerite

 

[Janea]

It's gotta be a pain, but I think you are doing the right thing by traveling to a big city to get surgery performed by a doctor with more experience. My uncle is a heart surgeon of a reputible hospital in the Chicago area and he stressed to me how VERY important it was to find a sugeon who does the exact surgery ALOT. Like once at least once a week for valve stuff. My surgeon does around 800 surgeries a year and 20-30% of those are valves so after a phone interview my Uncle gave a me a two thumbs up with him. Good luck and God bless!

 

[Der Biermeister]

I had a "textbook" event, comparably small (5") incision (much less healing pain, I suspect), -- Marguerite

Oh yeah - I'll trade

 

[tommy]

Hello Lee.

My AVR (for BAV) was at Medical City Dallas about 15 miles south of my house. There are other hospitals closer, but I wanted to go to the best. Of course, that's my biased opinion. I was extremely impressed with the surgeon, staff and hospital. Dr Michael Mack was the surgeon. I visited with him once pre-op and one routine once post-op.

One of my concerns was that my cardio did not have privileges at MCD. That turned out to not be a problem.

I highly recommend Dr Mack. I heard nothing but good things about him before hand and still. If this sounds like a commercial, so be it. 4 years later I sent him a letter and photo to let him know that one of his patients ran a marathon, he took the time to write back. A class act.

One other thing. During my recovery, I doubled up on Coumadin, resulting in a plasma transfusion and internal bleed. Dr Mack took ownership of the situation even though it was clearly my fault.

As Marsha said, you could fly to Love Field - not far from any of the Dallas hospitals. The drive from Tulsa isn't bad - done it many times, sometimes round trip same day. The "High Five" road construction at the intersection of LBJ (I-635) and US75 is done. MCD is just south of High Five.

Wherever you go, whomever you choose, do your homework, make a decision and don't look back.

 

[dcpickle]

Hi lee,
Greetings from another Tulsan. At least, I was for 40 years, till I got laid off from Williams and had to move to Georgia to find a job. I don't think I'll ever feel at home here. Way too big with too much traffic. Anyway, I traveled to New York City for my surgery. I was unsure of the traveling part, but it turned out to be no problem at all. The surgeon's office helped us with an apartment in which my wife stayed while I was in the hospital, and we both stayed in for about a week after I was discharged.

I never saw Dr. Stelzer or the hospital till the day before surgery. I saw the Dr. the day before we flew home and he gave the OK. he didn't want me to travel for several days after surgery.

I wanted the best surgeon I could get for the Ross Procedure, so I chose Dr. Stelzer, even though I had to travel, and there were competent local surgeons. So, I agree with your attitude of "travel if necessary". Unfortunately I don't know of any surgeons in Dallas.

Your problem will be that your main support (your wife) will have her hands completely full with a new baby (congratulations on this tremendous blessing) You may have to have someone with her and the baby while you're in the hospital and for a little while after you get home. Heck, many families need help with a new baby even without someone recovering from surgery.

My surgeon was out-of-network, but the hospital was in-network. This was good because the hospital was the biggest part. Insurance still paid well even for the out-of-network surgeon.

Welcome. You'll have lots of questions, so feel free to ask. You'll get so many answers a few are likely to be useful. And, the folks around here are extremely friendly, as you can see.

Oh, and don't worry. It won't be long till your surgery will be over, you'll be recovered, and you'll be spending all your time keeping up with the little one!

David

 

[dcpickle]

Just to echo mmarshall's comment. You can choose any surgeon you want. You don't have to be referred by any cardiologist or anything. (I'm living proof of that.) Just call them and they'll say send your echo tape (or maybe even e-mail it) They'll look at it and talk to you over the phone. If you're long-distance you can get it all set up beforehand, then just show up a day or two before surgery.

David

 

[Sir Reel]

I would highly recommend Dr. William Ryan at Presbyterian as the way to go if you decide to go to Dallas. Dr. Ryan is an excellent surgeon in the prime of his career (he is among the most experienced surgeons in the country at the Ross procedure, so you know he is highly skilled). My cardiologist told me he was the best in town, and another cardiologist told me he was top notch. While heart surgery is a common operation, you want the best.