See if hospital might have a guest house for families. Some do. It might be a lot less expensive if they do. Good luck to you. All the decisions can be over welming.
For the long haul
Linda H

Hi,
I had my consult with Dr. Adams several weeks ago and have scheduled my surgery for May 11. I'll be coming from a bit of a distance (not so far as you!) and thankfully we have friends across the park from the hospital where we can stay. Even though I haven't had my surgery yet, I *highly* recommend Dr. Adams. The consult was over an hour long, incredibly detailed, and he promises a repair (rather than a replacement). I could have had the surgery at a hospital closer to home but having spent some time on Dr. Adams' website, I realized I want HIM! Hope all goes well.
Selma

Smart to travel to NYC. Outcomes are significantly better at a center of excellence than community hospital. -- DVB

Did you ask hospital about hotel rate discounts? Northwestern Hospital/Chicago gave us hotel info and number to call. We got a big discount on hotel room that way. Northwestern is on the Magnificent Mile which is very pricey so it was a huge savings. We even got parking discounts. Sending good thoughts and prayers your way. All the Best, janis kielbasa

Hi Betsy, this is indeed a lot to think about. I am traveling to Cleveland Ohio from SC for my surgery. The expense of airline fare for me and my daughter, plus the hotel room is an issue. I will be there probably at least 10 to 12 days. I have to be there for 5 days before my surgery. But this is probably the most important decision I will ever have to make and I decided the money won't do me any good if I'm dead (not that I believe CCF is the only good place) but it is where I want to go and I will just have to sacrifice in other areas. That rate does seem pretty steep, hotels in Cleveland are much less expensive. But I guess that is the way it is in NYC.

I will be praying that you will get God's guidance in this decision. My personal opinion...if he wants Dr. Adams...go to Dr. Adams.

Good luck,
Linda Dixon

My husband and I are struggling with the decision of whether or not to travel for surgery too. $280 a night is pretty steep and what happens if there are complications and you have to extend your stay? Then again, this is your heart And getting the very best should be top priority. You can't change your mind once they already replaced your valve.
I think if it were completely up to me I'd travel for the surgery if I could. Ima little premature in the gameto make that decision though.
I hope things come into perspective for you as you get deeper into the process.

Nancy B

Bob,
I agree with the posts on your guestbook yesterday (Mar. 3) emphasizing the importance of getting additional opinions. Like Bob, I'm a marathon runner (I've done 12); returning to distance running post-surgery is highly important to me. Maybe your mitral valve isn't realistically repairable, but that's the exceptional case, not the norm. Unfortunately, many surgeons steer patients toward MV replacements because the surgery is much easier. A consensus has developed recently among the top surgeons and cardiologists to repair whenever possible. I don't see the downside to going into surgery hoping for a repair, even if the outcome turns out to be a replacemen. I'm going to Mt Sinai in New York (Mar. 13 surgery date) rather than staying closer to my home in Georgia. Their pre-surgery prediction is 90% probability of repair for me, given all of my circumstances. I'm having a re-repair operation, which is more complex. For more details, see my Journal. If you'd like to discuss details "off journal" contact me at jim26385@aol.com
- Jim Smith

Hi Robert,
I think almost all of us went into surgery with a valve choice made in the event that a repair was not an option. My suggestion is to find a surgeon that has done so many repairs that he/she will be able to make that decision based on experience. With that said, there may not be a choice, so having a valve selected is a must. I was ready for a tissue valve, but was repaired instead.
Good luck. Either way you will do well..
Jane

I just wanted to echo comments already made by many. Do your homework, get a second opinion, and go with a surgeon/facility that is a cnter of excellence. Even if you have to travel. Often I have heard the local team says you are stupid to travel, but you want a surgeon and hospital that does this in their sleep. Iwas fortunate, I ilve in NYC and my surgeon does 500 surgeries a year. You want someone who is very experienced. That surgeon will give you all the things you need to consider and help you decide what is right for you.

Good luck,
-Mitch Friedman

I had severe prolapse of both leaflets and my surgeon did manage to repair the valve. But prior to the surgery I had to tell him which valve to use in case he needed to replace it. There is never 100% guarantee for repair. I did choose tissue valve in case its needed. The choice between mechanical and tissue valve is personal and lots of things need to be considered.
I had my valve repair done using da Vinci robot and would not even considered it done any other way. Replacement is done using the same robot. The recovery is very quick although my surgery
was 9h long with me being on machine for about 3.5h. But the valve is repaired and there is no leakage:)
So, it can be done, question is how long your surgeon is willing to put into it, mine books only one surgery per day with robot, so there was time...
Good luck with the valve choice and surgery.

Ivana

Get a 2nd and 3rd opinion. Thankfully my cardio sent me to Northwestern/Chicago where they do valve surgeries all the time. Key is getting to a hospital and heart surgeon who can do these in their sleep. I had a repair. I chose a sternotomy because I wanted surgeon having full viewing and less time on heart lung. I was home alone at 2 weeks, driving at 4 weeks and walking 2 miles daily since. I am post op 9 weeks and doing great. I was told I will have a long full life now that I am repaired. Read, research, and find a top hospital who does valve surgery. Adam's book has a list of the top 10. After, all of that, if you still need replacement versus repair you then will have to research what will be the best choice of valve for you. The success rate for us is great, you will be fine. Try and not worry. Do your homework. All the best. Janis Kielbasa

I was sedated when I had my TEE. I had been sedated for a cardioversion to get my heart back in rhythm from atrial fibrillation. The cardiologist tried that twice unsuccessfully and then performed the TEE and discovered the leaking valve.

My surgeon was able to repair the valve, it sounds similar to Robert's condition. He repaired part of it and cut away some extra material. He said he had to use every trick in his arsenal to repair it. He had suggested a tissue valve as I would not need coumadin with one of those as a replacement valve.

John Lund

Hi...it's me again...Linda Dixon. I see that you live in Virginia, but I don't think you have said where you plan to have the surgery. I recommend that in addition to a second opinion about repair vs replace you also research the hospitals doing both procedures. Check how many they do, their outcomes, etc. This is information they should be able to provide you with. Also, if you haven't already, look up "US News and World Report" hospital rankings and look at the rankings for heart surgery. Not only are the facilities ranked, but also their doctors, nurses, etc. The most important thing about this surgery is the experience of the surgeon doing that same exact procedure. Some of the smaller hospitals may do a handful per year as opposed to the larger centers that do hundreds if not thousands. You want the safest procedure with the best outcome.
I am traveling from SC to Ohio for my surgery at Cleveland Clinic for that very reason. It's a long way to go, but worth it in my opinion.

Good luck with the decision making. It is truly difficult. Just research, research, research.

Linda Dixon

Glad to hear Robert handled the tests well. I agree about the repair...be sure to get a second opinion, but then...get a second opinion on everything. And I highly recommend going to a center of excellence where they do these things everyday, not just occasionally.

Let us know how things go and when, where, etc. about the surgery. We are all here to support and encourage! You can and will do this!!!

Linda Dixon

If replacement is the recommendation, get a second opinion. Repairs are technically possible 90% of the time. Watch the video on this site. Repairs have much better long-term outcomes because they leave the mitral apparatus intact, which is needed for proper heart function. However sometimes the valve is so damaged repair is not possible. Even then some beneficial valve-sparing options may be available. Discuss w/ surgeon. -- DVB

That was good news, glad he doesnt remember anything. I had the tee done but not a cath as of yet anyway. Im sure that day will come to. Hope all goes good for you.
For the long haul
Linda H

You might want to talk to your Dr. about being completely sedated for the TEE. I insisted on an an anesthesiologist and they did allow it. I 'm so glad I was. I had a tilt table test, 2 echoes, stress test, TEE, and angiogram within 2 days. I finally was diagnosed with severe mitral regurgitation and was in surgery the next week. Good luck, just tell them you insist on being sedated!

Hi Robert, I have not had a cath done as of yet, but I had my tee done a couple of weeks ago. Let me tell you I am the worlds biggest baby. Everybody here told me it was a piece of cake. They told me to dress for the occasion (gown) and explained everything to me as I was freezing, I think it was nerves mostly. I got an IV and hooked up to monitors. Think I got something to take edge off. Then I got the H2O. Then they brought the machine in and my doctor. i was awake but my brain was somewhere else. I remember talking to my doctor and telling him he intimidated me. Its cause of that long title behind his name cardiologist. lol. They had me get on my left side put something aound my mouth then put tube in and told me to sallow. Oh I had the spray. She told me to would taste like bananas and gas and swallow. I saw the monitor a little bit. Getting me ready and undoing it all took longer than the test. I was talking normal and making sense, so they wheeled me out and said to take it easy for the rest of the day. So really it wasn't to awfully bad.

You take care and you can do it to. Keep us all posted and good luck.
For the long haul
Linda H

Hi there! First of all about the cath...absolutely nothing to it. The worst part is having to lay without raising your leg or head for a couple of hours afterwards. They numb the groin with xylocaine and of course there is the quick "pinch" you always get when they numb you, but it is very quick and really no worse than getting a shot. As for the cath itself, you don't feel a thing. There is one part when they inject the dye where you may feel like you are wetting the bed. Feels just like that, they will warn you ahead of time that you are not really wetting all over the place. It was actually rather funny to me. I was able to watch everything on the screen and it is amazing.
As for the TEE, it was not anything like I anticipated, they do drug you, however you do have to swallow the probe, but it is very tiny and my imagination was much worse than the procedure itself.
Try not to worry, honestly it's not that bad.
Keep us posted and let us know how it turns out.
We are here to help you through this.

Linda Dixon

My TEE was done with the Michael Jackson drug. It was the best feeling I can ever remember. I woke up so happy and didn't remember a thing.
Jane, 12 weeks post-op

If I had the tee. I was out - so that made it great. Hope you get that. Ask for it !!

Everything else was great. I'm 3 weeks post now & honest- hard to realize I had it at all. . Hope it goes well for you.

Nancy Friedman. St Louis mo.

Previous post by Chuck Holmgreen. It's getting late and I tend to forget to sign these things.

Robert,

You will either gargle a lidocane substance, or you may get something called a hurricane spray. I've had two TEE's and I prefer the spray. However with the combination of the gargle/spray and the IV medication, there will be no gag reflex.

My best recommendation - when you feel the drugs hit, relax and enjoy them for the very short time before you go to sleep.

Hey Robert...welcome to HVJ. You have definitely come to the right place. An amazing group of fellow "valvers" here...all at different stages, pre and post surgery.
Regarding your question....I had my TEE and the cardiac cath immediately after. As a matter of fact, I have had 3 TEE's. This is nothing to get stressed about. In fact, you will not remember anything. For the TEE, you will get an IV then some stuff to gargle, which will make your mouth/throat numb. Next thing you know....you are waking up and its over. You will be very groggy and they will wheel you to the cath room, where they will shave your leg area, give you another IV and you will become very groggy again. I remember very little of it and it did not hurt at all. You will then have to lay pretty still for a few hours, until they feel your vein has healed enough for you to walk on it. You will walk around for a bit and then you go home.
Again, none of this hurts and I do not remember anything of my TEE's except the before and after.

A ton of great info on this site and I highly recommend you ordering Adam's book. Again, you have come to the right place.

Let me know if I can be of any help at any time. I am 4 months post AVR and am doing great....so will you.

JH Mattingly