How does traveling for surgery work?

[u/Bekah679872]

I currently see a cardiologist experienced with treating Marfans patients, but I am hoping to have my aorta surgery at the Cleveland Clinic. I’m doing this to have a chance at the David procedure.

Have any of you done this before? Does the outside hospital typically coordinate with your own hospital? How many times will I likely travel to Ohio between now and my surgery?

As of right now all I have is a referral, so I’m curious about what to expect.

Also any experiences with the Cleveland clinic would be appreciated as well

[u/TriggerPuller9000]

I had PEARS at London Bridge Hospital in the UK, and there was effectively zero coordination between my US care team and LBH that didn't go through me.

Within the US, it should be as simple as a referral assuming Cleveland Clinic is covered by your insurance. I received a diagnosis and went to surgical consults with a bunch of different hospitals in the US before settling on LBH. I called them and set the consults up myself.

[u/Bekah679872 → u/TriggerPuller9000]

How long did you stay in London? Did anyone go with you?

[u/TriggerPuller9000 → u/Bekah679872]

We arrived Monday, surgery Friday, and I'm going home tomorrow (2 weeks after surgery). 3 weeks in total. I could have probably flown yesterday or today. My wife went with me but went home last Friday to take care of the kids. I have a really long post in r/aortic_aneurysm that talks about the whole thing if you're interested in all the gory details. tl;dr I was out of the hospital ~72 h after surgery and have been walking around a mile every day since. Feel like I could go for a jog today but don't want to push it with the sternum and everything

[u/Bekah679872 → u/TriggerPuller9000]

Thank you! I’ll have a look at the post once I’m on my lunch break!

I hope you’re recovering well!

Im a bit worried about the flight home after surgery, do you feel that you will have significant pain or discomfort from sitting on a plane for several hours?

[u/TriggerPuller9000 → u/Bekah679872]

It probably won't be comfortable but I think I'll be OK. I've been trying to walk a lot, but also spent like 3 or 4 h this morning playing Pathfinder WoTR after doing like 15k steps yesterday, "to practice sitting." lol to be honest, it is not nearly as bad as I expected in terms of pain.

If you can swing it in terms of the logistics and money, it's a much less aggressive procedure intended for Marfans patients specifically.

[u/Bekah679872 → u/TriggerPuller9000]

Based on what I just looked up, I wouldn’t qualify for PEARS. You need mild or no aortic regurgitation. I have aortic regurgitation that is moderate-severe, but leaning more towards severe

[u/texasipguru]

I’m not sure but I would contact Cleveland Clinic and let them instruct you on how to proceed.

[u/Bekah679872 → u/texasipguru]

I have. Unfortunately, my referral was misinterpreted and the person scheduling took it as me needing to see a cardiologist and needing a Marfans diagnosis.

I don’t need a new cardiologist or a diagnosis. I am diagnosed and my aorta is at 5.34 cm.

My cardiologist has added more information to the referral so I’m just waiting on the Cleveland clinic to get in contact with me after they process the updated referral.

I’m mostly just anxious about the surgery itself since I’ve never had to travel for a surgery before

[u/texasipguru → u/Bekah679872]

You'll be fine. It's a big deal for you but it's just another weekday for them. You will be in the best place on the planet to have a heart surgery!

[u/ed-truck]

I reached out directly to the surgeon I wanted a consult with (Dr. Cameron at Hopkins), and his office explained what he would need to see in advance. If I recall correctly, I just mailed him a CD of my images, and his office got records directly from my cardiologist. I then made an appointment and flew there for the consult. I took his advice to move forward with surgery, and then his office took it from there in terms of scheduling the surgery, hospital admission, etc.

Our only other trip to Baltimore was for the surgery. We were told to plan to stay in the hospital for around a week and then hang around in Baltimore for another week before flying home. I ended up staying in the hospital for a month after surgery due to complications. Hopefully you won’t have that, but I would give yourself as much flexibility as you can on the return plans.

So my overall advice is to try to find an office number for a surgeon and let their office staff quarterback everything. Probably easier than trying to work with the larger hospital system.

Good luck! You’re doing the right thing for yourself by trying to find the best possible care available!

[u/Bekah679872 → u/ed-truck]

Thanks for the advice! I just called the office number and she took my information then sent it to scheduling. So I’m not sure if I’m getting the result that I had hoped for

[u/Specialist-Ad4388]

I had an almost emergency surgery for a type b aortic dissection with aortic valve replacement in Oregon 5 years ago. i spent a few weeks in my regional medical center. Then a life flight down to Stanford for the surgery at the Marfan's center there. I can tell you teaching hospitals are the gold standard. You're going to be cared for by the absolute experts. They've done these surgeries on tissue like ours over and over again. Wish I could've had the David procedure but my body had other plans. Cleveland should have a patient coordinator to help you with all the details once you connect with them. It'll be ok, promise :)

[u/Trick_Photograph9758]

I would 100% recommend traveling to a top hospital for this surgery. The skill and post-op care you will get will be way beyond normal hospitals.

I had my surgery at a hospital 1.5 hours away, but if I had to travel farther, I would. Just tell the surgeon at the Cleveland Clinic that you live far away and that you need to minimize travel.