discussing mechanical valve brands with your surgeon?

[pikacat]

Pikacat, I apologize. I did not mean to sidetrack your original question.

haha no worries. i like hearing everyone's thoughts.

 

[Luana]

i like all these names. the supra & regent, eh? i want the emperor king valve.

but thanks! i'll bring all this up at my next appt.

I think I'd like the "winning 50 million in the lottery valve."

 

[ALCapshaw2]

i'm not sure why i assumed everyone's doctors were a lot more informative than mine. well, i guess then everyone just has a brighter burning natural curiosity than i do. i tried looking it up my congenital defects once, but the words that i recalled my surgeon as saying didn't turn up any hits, so i figured i misheard him and i just wasn't all that interested weirdly, i'm interested in a lot of things about surgery and how people identify with disability. but as far as how they fix me up and all -- i just want to get back to my life again ASAP.

I'm guessing that you do NOT have copies of all your Lab and Test Reports.

By Law, Medical Providers are required to let patients obtain copies of their records.
You will have to sign a Release of Medical Records Form (to Yourself for Personal Use)
at the Facility where the test(s) were performed. There may be a copying charge which
is usually waved if the copies are going to another Doctor (such as your Primary Care Physician).
You can also request copies of the Letters from Specialists to your PCP.

These Test Reports and Letters will tell you Way More than you were ever told in an Office Visit.
There are some links in the Reference Section which can guide you in interpreting Echo (and other) Test Results.
Or just ASK.

Dr. Laks is one of the Best of the Best, so you were in good hands.
Sometimes you have to decide whether you want a specific surgeon or a specific valve.
Some (All?) of the Valve Manufacturers can tell you which surgeons use their valves in different parts of the country.

Some Hospitals put their Valve Business up for "Competitive Bid", selecting 2 Mechanical Valves and 2 Tissue Valves as their primary offerings. Cleveland Clinic is now offering On-X and St. Jude Mechanicals. I've seen reports of Mayo Clinic patients receiving Carbomedics Valves. (I'm guessing they also offer St. Jude Master's Series Vavles which have been around for 30 years now).

'AL C'

 

[pikacat]

I think I'd like the "winning 50 million in the lottery valve."

lol! though more like my valves are worth 4 houses by this point.

 

[pikacat]

thanks al! i'm not really motivated to interpret my own echos or anything. but i will ask my surgeon about the brands of valves. i'm confident that my surgeon, like dr. laks, is the sort who should be performing the operation on my heart, so i'm not really going to shop around. but i'll see what he has to say! thanks for the info.

 

[Lily]

Pikacat -

Hoping all goes well for you For many years, I couldn't exactly remember the terminology surrounding my heart defects either.

As I read your post, however, I was wondering if you could have a repair, but I suppose they would have mentioned that to you if it was a possibility.

I searched and found this info, from The Society of Thoracic Surgeons, about cleft mitral valves: "Congenital mitral regurgitation may be due to a cleft mitral valve (a valve with a separation or cleft down the middle) associated with an atrial septal defect, a type of hole in the heart between the low pressure chambers or atria. Such valves can sometimes be repaired simply by closing the cleft with sutures. Valves regurgitant due to bacterial endocarditis can occasionally be repaired, however the majority of mitral valve repairs are performed for degenerative disease. Degenerative mitral valve disease may be due to an elongation or rupture of the chordal apparatus, the "heart-strings" that support the valve normally, or due to a more generalized weakness of the valve itself such as the "floppy valve" syndrome in which all of the components of the valve are enlarged and elongated.

Not all mitral valves can be repaired. A preoperative echocardiogram may help your surgeon predict the likelihood of repair, but cannot guarantee it. Mitral valves that are regurgitant due to rheumatic fever are often both stenotic and regurgitant, and are often beyond repair."

I was also thinking how refreshingly different -- mostly full of positive and helpful support -- this thread is in contrast with someone who might have asked about tissue valve brands, which typically would have been swarmed with critical posts from members demanding why a member would make such a choice.

 

[pikacat]

hola lily! i hope you're doing well with your heart and everything else, too!

i did have a repair in 99. the repair to the aortic valve never took at all. whatever dr. laks tried to do failed since day 1. as for the mitral valve, that repair worked, but by now, it's gotten kind of crummy and my surgeon today said that they might just replace it because the whole purpose of my wanting to get a mechanical valve is so i'll avoid the whole third surgery thing. so he said while he was in there, he'd just open up the atrium too or whatever and check it out to see if that should be replaced because it seemed to be getting really stiff.

i'm new to this forum, and i wasn't aware of the bio/mechanical bias really. i guess i can understand it in my own way. some people -- myself included, have strong feelings about their past surgeries and want to spare others the pain of going through multiple surgeries if they think someone is taking open heart surgery as a "light decision." i remember once on another forum i was in, someone came into the heart patient forum pretty much acting as if she really wanted open heart surgery despite having no actual problems (she had mild regurgitation) and calling it a "pain in the butt," "money saving" surgery. pretty much all the people who had gone through the surgery dogpiled her for treating it like that. so i think maybe the reaction comes from wanting to impress on someone that multiple surgeries isn't a cakewalk and unless they have a great reason for it, they should treat that decision with respect as it comes with pain, burdening families and a small chance of facing your mortality.

all the same, it's a personal decision and i was very relieved that my surgeon and cardiologist allowed me to make that decision without expressing any of their own opinion.

i guess that was the very longwinded approach to saying... i see that by nature, cardiac patients have a lot of emotional investment. but at the same time, it's a personal decision and we should strive to treat it impersonally and just give people the facts. but i know it's hard. but in the end, personal autonomy is a great thing!

anyway! thanks for the information! i appreciated it!

 

[Lynlw]

Is there a reason you aren't going back to Laks? Justin's had many heart surgeries, by the top CHD surgeons and if at all possible we try to go to the same surgeon.
I'm not quite sure what you are talking about here that they might replace,
"so he said while he was in there, he'd just open up the atrium too or whatever and check it out to see if that should be replaced because it seemed to be getting really stiff."

 

[pikacat]

my insurance didn't cover my surgery with dr. laks because it was out of state. so this time, i'm going with a surgeon in oregon. back in the day, me and my family tried asking a few lawyers, but they said it was a 50/50 type of case. in the end, ucla did the surgery for charity, but everything else really wiped us out.

oh my surgeon was talking about potentially replacing the mitral valve, but he wasn't sure. dr. laks repaired it last time by just sewing up the cleft and reshaping the leaflets but apparently it had gotten kind of calcified since. so he thought if there was a chance it would need to be replaced down the line, he'd just do it now so i wouldn't need a third surgery. sorry if i misquoted anatomy... it's really not my forte. i thought he said atrium. i was really shocked when he told me he might be replacing my mitral valve, too. i thought that was good to go.

 

[Lily]

. . . i'm new to this forum, and i wasn't aware of the bio/mechanical bias really. . .

Yeah; I first joined the forum before my valve replacement, in '03, when I was 42. The bias reared its ugly head in one of my first posts. Really surprised me. It's so much better when others respect ones' unique personal medical decisions though.

For me, I meant to mention earlier but forgot, my (congenitally deformed bicuspid) aortic valve had gotten so bad that my mitral valve was looking like it was going to need work too; but I was so happy when I woke up from the surgery because replacing the bad valve allowed the other one to work properly without its needing any work.

I hope your surgery and recovery will go very well

 

[Lynlw]

my insurance didn't cover my surgery with dr. laks because it was out of state. so this time, i'm going with a surgeon in oregon. back in the day, me and my family tried asking a few lawyers, but they said it was a 50/50 type of case. in the end, ucla did the surgery for charity, but everything else really wiped us out.

oh my surgeon was talking about potentially replacing the mitral valve, but he wasn't sure. dr. laks repaired it last time by just sewing up the cleft and reshaping the leaflets but apparently it had gotten kind of calcified since. so he thought if there was a chance it would need to be replaced down the line, he'd just do it now so i wouldn't need a third surgery. sorry if i misquoted anatomy... it's really not my forte. i thought he said atrium. i was really shocked when he told me he might be replacing my mitral valve, too. i thought that was good to go.

OK that makes more sense.
IF you are interested in going to back Lak since he did the work on your heart before. even tho he is out of state now, it's pretty easy to appeal with insurance, based on continuty of care. We did that a couple times and got everything coverred 100% just like it was in network.

 

[pikacat]

OK that makes more sense.
IF you are interested in going to back Lak since he did the work on your heart before. even tho he is out of state now, it's pretty easy to appeal with insurance, based on continuty of care. We did that a couple times and got everything coverred 100% just like it was in network.

i didn't know that. my cardio mentioned that i could go back to dr. laks if i wanted, and i said my previous problems and he referred me to dr. slater at OHSU. i feel comfortable with him. additionally, i have a good network of friends here and i hired a home nurse and i have a LOT of friends who are taking my dog and are coming every day to help. if i went to l.a., i'd have no network of help.

he didn't mention what you mentioned -- i wish he had simply because i wish he was better versed at navigating insurance, just as i wish my previous cardio was. it's too bad that we have to be insurance experts to survive. i can't even think about this rationally, to be honest. i mentioned emotional issues when it came to surgery. well, this is the one that really gets me going. i don't even have an answer to it.

 

[pikacat]

I was so happy when I woke up from the surgery because replacing the bad valve allowed the other one to work properly without its needing any work.

I hope your surgery and recovery will go very well

i'm really glad that worked out for you!

personally, i'm heavily invested in patient autonomy! my first legal internship was in patients rights because of all that i'd gone through. so i very much agree with you that we should respect peoples' unique medical decisions. there's more than enough legal and regulatory hassle stopping us from getting the medical care to live our lives. so why put up more roadblocks or purposefully hinder the flow of information? to me, that's just counterproductive.

well, i'll try to keep everyone updated!

 

[ALCapshaw2]

Pika - Have you asked the Sugeon in Oregon how much experience he has with repeat and dual surgeries?
I ask because Experience Counts and the more they do (of what you need) the better they tend to be.

Regarding a Mitral Valve Replacement "while he is in there" I highly encourage that idea
because Risks go up significantly for 3rd Surgeries (just ask the surgeons if you want confirmation).

 

[pikacat]

hey, al! i think dr. slater's speciality is valvular repair: http://www.ohsu.edu/xd/health/services/providers/slaterm.cfm

so hopefully he's done all types. but if it's not a rude question, maybe i can add it to my ever-growing list.

 

[Luana]

he didn't mention what you mentioned -- i wish he had simply because i wish he was better versed at navigating insurance, just as i wish my previous cardio was. it's too bad that we have to be insurance experts to survive. i can't even think about this rationally, to be honest. i mentioned emotional issues when it came to surgery. well, this is the one that really gets me going. i don't even have an answer to it.

Most doctors don't know much about insurance. I am a licensed insurance agent, so feel free either to ask here or PM me.

 

[pikacat]

thank you so much -- i hope it doesn't come to that (Again). i have private insurance that i had before i knew i had congenital defects. i'm hoping that keeping the surgery in state will ensure payment of medical costs. if not ... well, between that and my law school student loans, there's always bankruptcy, maybe. well. life will go on, anyway, when it's all over. i'm not really sure what questions to ask right now. i guess if i was smart, i'd call my insurance company. but the way i figure, they either pay for it or they don't. i'm either going to get the surgery done and have smaller bills, or get the surgery done and have a giant bill i can't pay for. i just need to go forward with this anyway, and there's nothing i can do about it. maybe it's a naive approach.

 

[Lynlw]

Most doctors don't know much about insurance. I am a licensed insurance agent, so feel free either to ask here or PM me.

I agree with the doctors not knowing that much about insurance, especially since there are so many companies and plans. I always found the social workers at the hospital to be the most on top of any insurance questions or getting problems solved. (at least at the hospitals that each dept has their own Social worker)

ps I didn't mean that the social workers knew more than insurance agents, I meant they usually knew more than the doctors..

 

[pikacat]

well, at the time, i was just 19, and to my mom, when the cardio told her that i should go either to this surgeon in l.a. or chicago, she listened. we never considered the monetary consequences. my cardio thought it would work like a referral. unfortunately, it did not. i know i really should call my insurance company. i think there's just so much responsibility i can take on right now before i'm like, "haha. end of the line." setting up all my care for my animals, myself, getting my student loans in deferment, and trying to take the bar right now (which i'm totally doing, as evidenced by my all day posting here) kind of put me at the end of the responsibility train. maybe i'll call my insurance co. after the bar like a smart adult. ugh.

 

[Lynlw]

well, at the time, i was just 19, and to my mom, when the cardio told her that i should go either to this surgeon in l.a. or chicago, she listened. we never considered the monetary consequences. my cardio thought it would work like a referral. unfortunately, it did not. i know i really should call my insurance company. i think there's just so much responsibility i can take on right now before i'm like, "haha. end of the line." setting up all my care for my animals, myself, getting my student loans in deferment, and trying to take the bar right now (which i'm totally doing, as evidenced by my all day posting here) kind of put me at the end of the responsibility train. maybe i'll call my insurance co. after the bar like a smart adult. ugh.

Do you have a contact person at the hospital where you will be having the surgery or the surgeon office? For all of Justin's heart surgeries (except the ER ones of course) and even tests like MRIs that sometimes needed pre appoved, the surgeons /hospital staff always took care of getting everything approved and they would call us to let us know if there was a problem that we needed to appeal and how to do it.
We live in NJ and Justin's OHS were either in Pa or Delaware and we've even gone to Boston Childrens for 2nd opinions and tests and they (the centers) always took care of everything getting approved and everything ended up being approved as "in Network" which is VERY important as far as bills go.
But you could call the hospital contact or the insurance compny just to double check so you don't have that to worry about.