A few questions from a newbie

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K

karlaosh

Hello!

This is my first post, though I've been reading throughout the forums for a month or so.

I have a bicuspid aortic valve that's decided to take a fairly sudden turn for the worse. Starting about a year ago, my left ventricle measurement (LVEDD) keeps getting bigger and bigger every time I have an echo. My cardiologist is telling me that this trajectory puts me on course for valve replacement within months.

SO, I'm looking into Cleveland, insurance, valve type, etc. This website has a wealth of information and opinions. Thanks for all the great discussions. But if anyone wants to put in their two cents, I do have a few specific questions:

1) I have a TEE scheduled in two weeks. The doctor tells me I'll be pretty doped up and that it's no big deal. True?

2) Did any of you go to Cleveland even though you had to pay a big chunk out-of-pocket? With my insurance, Cleveland Clinic is "out of network" and so I'll have to pay a healthy amount. Yet I'm feeling that for my peace of mind, it's probably worth it...

3) Did any of you opt for a pericardial valve at a young age? I'm 38.

So much to think about. Thanks in advance for any advice you can offer.

Karla
Fort Collins, Colorado
 
Welcome

Welcome

Hi Karla,
Just want to welcome you to this Great Site. You will find that there are some very nice and helpful people on the site. There will be others coming on later, the weekends are kind of slow. Who is your cardiologist? Mine is Dr. Luckasen from Ft. Collins. I had my surgery up there with Dr. Stanton. You should check in with him as he is a very fine surgeon. Just wanted to let you know and again Welcome. Take Care

Dave
__________________________________
Surgery: 4/21/03
Aortic Aneurysm Repair
AVR, with a St. Jude Mechanical
Heart Center of the Rockies
 
Hi Karla-

Welcome to this terrific site. You are right, there is a collective wealth of information here.

Regarding the TEE. With an experienced person doing it, it will be fine.

My husband has had several of them. All were OK, except for the one with a newbie doc, who did not numb his throat enough, and did not give him enough relaxation stuff. TEEs are uncomfortable if not done right. So my advice to you is to make sure you have someone who has had lots of experience, and make sure you tell them that you do not want to be uncomfortable.

The information gained from this test is invaluable, and it doesn't take very long to do.

I would assume that since your doctor has told you that you will be OK, he is confident in the skills of the person doing the test. But you know what they say about assuming-- Just cover your bases and ask the questions yourself.

Can't help you with the other questions, my husband's first valve surgery was done in Boston in 1977, and his most recent two others were done right here where we live, Plus he has had 2 lung surgeries done right here where we live as well.

These days, there are fantastic, skilled surgeons in most cities around the country. We were very pleased and it was convenient with no added traveling expense. My husband has an aortic and a mitral mechanical.

Nice to meet you. Others will be along soon to help you out.
 
Welcome!!

Welcome!!

Just wanted to welcome you to a great site! I am postive between all on the site we can get your questions answered.

I can tell you about my TEE's, I have had 2 since April.
With the 1st one I remember(barely!) the Dr saying
"she's fighting it, give her some more medication." and with that out I went. The 2nd one was last month and I don't remember a thing! My husband said I spoke to him on the way back to out patient recovery, I have no memory of it. (I sure hope I was on my best behavior:D :D ) I had a slight sore throat after the 2nd one but nothing a few lemon drops didn't relieve.
I hope that helps.
Again welcome!
 
Hi Karla and Welcome.

I'm Evelyn from New York who can't help you with any questions because my husband, Tyce, didn't have a TEE nor did we go to Cleveland, but WELCOME ANYWAY!!! This is a great site with wonderful, knowledgeable folks who will help you out with ANY questions you might have. You truly will love it here.

Again, welcome.

Evelyn
 
Hi Karla and welcome aboard

The TEE as Nancy said, if done properly, you won't know anything. Mine was done by a "not so experienced" Doc and I was "with it" for about the first 2 minutes or so. It wasn't the most pleasant thing I've had, but I've had much worse. For the most part, they are done properly so it shouldn't be an issue. You will be well sedated.

CCF being out of network---Will your Doctor give you a referral to go to CCF and if so, you may want to see if CCF isn't considered a Tertiary provider with your insurance co. You may have to appeal, but many have been found to pay none the less. One of our Members, Melissa and she is from Colorado too, just had her surgery last Monday there and that's pretty much how it worked with her. You may want to check into that.

You can get care close by home that would be equal too if not better or worse, then CCF. If you want the piece of mind, there's nothing wrong with wanting to go to the top rated hospital for heart surgery. It's your life afterall.

The valve---There are no wrong choices. The only wrong choice is not to get repaired. You'll want to discuss valve choice with the surgeon who is going to be inside of you. You don't always get what you want. Sometimes anatomy doesn't allow it, so plan on a back up plan in case. Age has no meaning in this thing. We've got members younger then you and older. The only question I would concern myself with if I were you is, "How many times do I want to go through this surgery?" It gets more dangerous with each surgery after the first one. I'm 41 and just had a Mechanical put in last year. I have no desire to attempt another surgery if it can be helped.

Again welcome. Be sure to read around as you've been doing and ask anything that comes to mind. We'll try our best to get it answered. There are so many people here with so much experience that to not get an answer is rare.
;)
 
Hi Karla with a "K",

Welcome to this wonderful place.

Don't worry too much about the TEE's . I've had about 6 of them and the worst part (besides the IV) was the taste of the numbing stuff they use on your throat. My hospital just changed to a new kind that is a gel they put on a tongue depressor and you hold it in your mouth until it dissolves. You do this 3 times or until your gag reflex is gone. I am the world's biggest chicken and I can tell you the TEEs are not bad. My cardiologist does the TEEs himself and so I get immediate feedback and prelimary reports so I am not having to wait on the results.

Good luck with your test, I'll look forward to hearing more from you on the forum.

Carla with a "C"
 
Hello Karla,

I've had 2 TEE's with NO PROBLEMS. The standard procedure here is to administer Demerol (for pain) and VERSED (for conscious sedation). The Doctor can control your level of awareness by the amount of Versed used, taking you anywhere from being awake but not really caring to not knowing or remembering anything. If you have an esophageal stricture (rare, mostly in patients with serious Reflux Disease), you may want to ask them to check your esophagus with an endoscope and possibly 'stretch' the stricture before using the larger TEE sensor. Generally, this is not standard procedure.

Valve selection is always a difficult decision, trading off valve durability versus the 'inconvenience' of being on anti-coagulation medicine (Coumadin) for the rest of your life.

Tissue Valves last from 10 to 20 years depending on type and age. Unfortunately, the younger you are, the more rapidly tissue valves tend to deteriorate. Ask your surgeon if he has any data on the tissue valve(s) you are interested in for people your age.
The Bovine Pericardial valves showed 90% durability at 15 years and counting in a recent study. Some early recipients are approaching 20 years. There have been a 'few' cases of early deterioration.

Mechanical Valves should last forever. Anticoagulation medicine is needed with mechanical valves because blood clots 'may' form on them without medication. Some doctors claim there is a cumulative risk of bleeding incidents with Coumadin. These may range from bleeding gums or a bloody nose to more serious bleeds requiring transfusion (rare). Regular testing is required to maintain the proper level of anticoagulation. Many Coumadin Clinics now use 'finger stick' instruments for testing and home testing units are also available. A new drug is on the horizon that does not require such frequent testing but it will be a few years before it is fully approved. Some of our participants have been on Coumadin for a LONG time (25 years) without serious incidents.

Heart Surgery is a well developed procedure that is performed well (97% or higher success rates for first timers) at many regional heart hospitals. An internist friend of mine told me to just find a nearby hospital that performs LOTS of heart surgeries and not to worry about going to one of the Major Heart Centers.
The main thing is to find a surgeon who has lots of experience (someone who has performed hundreds of similar operatons) with the valve of your choice.

The final decision comes down to which set of undesirable consequences you can best live with and the judgement of your surgeon when he finally opens you up. Even if you and the surgeon agree on a specific valve, there may be extenuation circumstances which force a 'change in plans'. My first choice was a Bovine Pericardial valve but my surgeon felt a mechanical was needed after he opened me up. It is a good idea to discuss alternatives and have a list of two or three choices agreed upon before surgery.

With your enlarging heart, I would urge your to proceed to interview surgeons ASAP. If you wait too long, permanent damage can be done to the heart muscle from compensating for your narrowing valve. If caught early, the heart 'often' returns to normal size in time. Cardiologists like to put off surgery as long as possible. Surgeons like to operate while the heart is still in good condition. I almost waited too long. I side with the surgeons on this issue.

Best wishes in making your choice and finding an experienced surgeon. Your cardiologist should be able to make some recommendations for good surgeons in your area.

'AL'
 
Hi all.

Thanks for all the great info. I'm already feeling much more at ease about the TEE. As Al suggested, I checked out my local hospital on HealthGrades.com and for aortic valve replacement, they rated just one star. (Yikes.) There look to be better options in Denver.

Anyone know if it's possible to find out which surgeons in my region have performed lots of aortic valve replacements?

Thanks again.
Karla
 
Karla there isn't any easy answer for that question. About all you can do is look up surgeons and start interviewing them to find out who's done what. It's not as easy as one would think. If you can get passed the bulldog receptionist, then you may get somewhere. I'd start by asking my Cardiologist and Primary Care Physician for some referrals and take it from there.
 
Welcome
Don't worry about the tee, my baby was 5 days old and I was nursing so they only gave me a small dose of something to help calm me. Really the worst part of it is the stuff they spray in the back of your throat to numb it. I was completely awake for it and alert. It just felt weird but did not really hurt, and I am a big baby, so you will do fine. Good luck and take care.
 
Hi Karla - I went out of state for my surgery to the Cleveland Clinic. I wanted the best, since I figured I wouldn't be doing this often. I opted for the homograft, since I wanted to avoid the coumadin. Anyway, I take an aspirin per day and that's it. Good luck with your decision, the cost is pretty high if you pay for it yourself, between 100k-200k.
 
hi karla!
welcome to this wonderful site. as you can see everyone here is so supportive and helpful.
i can't add much, but joey's TEE lasted 20 min. from start to finish.
i was in the waiting room (next door) and the doctor let me stay with him until he waws out from the demerol and versed, and then called me back in when he was coming to, as soon as the procedure was over.
he had said "ill see you in about 20 min." and he was on the dot!
joey had no recollection of the procedure and was fine once the meds wore off.

as far as the valve goes, ross is so right when he says that there is no wrong valve choice.
it's a very personal thing for each of you. read all you can here and try and gather all the info you
might need to make a comfortable choice/decision.

please keep us posted on your condition, choices, etc.
wishing you all the best, sylvia
 
Hi Karla

Good luck with CCF. Insurance stinks, doesn't it?


Ross and Sylvia are on the money. THere is no wrong valve choice. It comes down to what's right for you.
 
Hi Karla,

I chose Cleveland Clinic for my mitral valve because I live two hours away and it was in network for me. My local GP didn't feel it was at all necessary for me to go there. I felt that because I had been diagnosed with dextrocardia years ago that I would be more comfortable where surgeons had seen many unusual cases. It turned out that my heart was also rotated differently and that I have two functional veins from my brain. I had been told one of those had atrophied at birth. That had an effect on the placement of a pacemaker surgery.

Every time I had an echogram people crowded around and wanted to take turns trying to find my valves. That was mildly amusing until the post-surgery check. I was in the lab forever and lying flat on that little platform was no day at the beach.

I am certainly glad that I went there, but it took a big toll on my family and was rather expensive. Unfortunately, I needed to stay in the hospital for 15 days and my husband stayed at the hotel. I was paying people to housesit and stay with my 13 year old. My daughter came on the weekends, but I missed her terribly during the week.

I hope that your TEE goes well. I'm sure that you will make a good decision about where you need to go for surgery.

Kathy
 
I'm sure appreciating all the words of wisdom. As to where to have the surgery done, I'm most concerned about finding a surgeon with lots and lots of aortic valve replacements under his belt, and I don't think there's such a guy locally.

I'm also wondering if less experienced surgeons would steer me away from certain valve choices simply because they don't have experience "installing" them. Any thoughts on this?

Thanks again for all your support.

Karla
 
Karla,

You may need to 'bug' your cardiologist and / or Primary Care Physician for some references to Surgeons who are experienced with the valve(s) you are interested in.

You could also call the offices of surgeons in your state and ask the receptionist or nurse if the surgeon has much experience with those valves.

If you are not successful in your quest, note that the Bovine Pericardial Valve is highly regarded at the Cleveland Clinic. You may want to ask your insurance company what it would take to get approval to go there.

It is OFTEN necessary to do a little 'pushing' to get what you want! Good Luck !

'AL'
 
Karla - sounds like you're getting good advice. You certainly want to seek out the surgery center where a lot of these are done because that is where you'll find the experienced surgeons. Some people try to stay away from teaching hospitals because of concerns they may be used as part of someones training. Another factor, is trying to stay fairly close to home if there will be much of a post surgery service issue. What I'm trying to say is that if you have something very unusual done, and it will need monitoring, then it will probably entail more trips back to the site where the surgery was done. Hope this helps. Chris
 
Karla

Karla

Scroll up to the top of any page of forum..Click on members.. Look for Pillarpaul under P's and Rain under R's. They both live in Co...and had their surgeries there. When their user-page comes up e-mail them.. They will be glad to help out. Bonnie
 
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