Shone's Complex

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dreamy885

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Hi everyone, this is my first post...I was wondering if anyone else here has Shone's Complex? I have the incomplete form which for me includes: Aortic & mitral stenosis, aortic coarctation and parachute mitral valve (also bicuspid aortic valve.)
I had OHS at age 2 (1987) to repair the bicuspid AV so it would open further. Since then I've only needed a stent (at age 26) for the aortic coarctation which was done through my femoral artery.

My annual checkup was in January where they told me that my aortic stenosis was bordering severe and to call if I had any symptoms and that he would see me in 6 months instead of a year. Well the symptoms started in Feb and have steadily picked up over the past 2 months. We did a TEE a few weeks ago and found that the mitral valve is severely stenosed as well and that it's time for valve replacement. My cardiologist and I discussed the valve options, I was leaning toward tissue and he said he would choose tissue as well.

Last week I had my consult with my surgeon and he wants to try and repair the mitral valve, he also recommends a mechanical valve. I'm so torn, because with my multiple defects, can he really guarantee that I wouldn't need surgery again for another reason? I'm 31 years old (happy with my 2 kids) and the thought of spending the rest of my life on warfarin puts me into a panic attack. I've read through several posts and have seen how many are living a normal life on coumadin and that comforts me, but I hate the permanence of it.

Also, for females of child bearing age that chose a mechanical valve, did your surgeon tell you to get a tubal first? I don't have time to get a tubal in 19 days (seeing as I have 4 appointments to go to and end of school year events to attend.) Just how risky is it to have surgery when you're on AC?

I'd love to hear from anyone and especially those who have needed mitral and aortic valve replacements or had mitral repair with AVR. I'm meeting with my cardiologist again on Tuesday, he is having a meeting with the surgeon and several other doctors to present my case and I'm so anxious about what he's going to say to me. I was too young to remember my OHS, and it freaks me out that I don't know what to expect.


-Heather
 

pellicle

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Hey Heather

Firstly, don't let it feels you out.

Take a deep breath and read and think as the process of making a decision will mean you will naturally go back and forth.

Myself I view every choice as having permanence. If you choose (for instance) a tissue valve that has a kind of permanence too. It locks you into a future of another surgery with certainty.

Myself I would give more credence to your surgeon than to your cardiologist. Surgeons know their stuff at an entirely different level to a cardiologist.

Take your time, ask questions, write them in a big sheet of paper and pin it on a door. I taped together 8 sheets of A4. Look at the questions and write the answers there too. Replace as you fill it or change what is important.It was what I did for planning my masters.

Ask your surgeon an out increasingly complex surgeries as time goes on with scar tissue making each successive surgery more complex and risky.

Best Wishes
 

dreamy885

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Apr 21, 2017
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Des Moines, Iowa
A couple other things I'm worried about with warfarin; (the ladies will have to help here) Does it affect your menstrual cycle?
Also, I'm on Medicaid, does that cover weekly at home INR testing? Can I not eat broccoli and cauliflower anymore? What about alcohol? I don't drink every day, but when I do drink it's usually a few mixed drinks or shots. I cut hair for a living and I'm concerned about if I cut myself will I be able to continue the haircut or will I be bleeding too much? For those who get migraines and/or severe cramps, what pain reliever do you use (I usually use ibuprofen but I've heard that's a no-go with warfarin.) I'm sure I have a million more questions but we'll start here.
 

Superman

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Cauliflower's not even green. That's a new one. But yes - you can eat all the veggies you want, so long as you're fairly consistent with your diet and with your testing.

I joke about being a lightweight since being on warfarin, but alcohol has never really moved the needle on my INR, and I wouldn't even call myself and occasional drinker. More like seldom.

I just use Tylenol in varying strengths as needed with pain. It's been fine.

Can't help with the lady stuff.

Don't know about Medicaid, but I've heard Medicare covers home testing.

You can continue cutting hair. I shave almost daily with no issues. I'm also removing a closet to replace with mudroom lockers right now. That involves pry-bar use, removing boards filled with nails, then pounding the nails out, cutting wood using both power tools and hand saw, etc... If I get a cut, I get a bandaid, just like anyone else.

My only thought on valve choice is if he's going mechanical, then I'd want them to just replace both. If he's thinking tissue for aortic, and repair for mitral, I don't know how long a mitral repair will last you. If you're looking at a 2nd surgery for the mitral because of the repair, might as well stick with tissue. Buys quite a few years with no need for Warfarin. I know we talk about how great we live even on Warfarin, but reality is, it's not chocolate ice cream. My preference would be not to take it if I could still face minimal likelihood of repeat surgery.

As far as surgery on AC - I've been on Warfarin for 26 years. I've had my gallbladder and appendix removed (done in one procedure), I got snipped, and I had a second open heart surgery (due to an aneurysm), all managed just fine.
 

dreamy885

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Des Moines, Iowa
Thank you Superman :) I was thinking about that too, that if the mitral repair wont last forever then to go with tissue. I'm not sure where I read about cauliflower being on the list of foods to be careful with :p

Does anyone know why they don't do homografts much anymore? I've seen several posts where people are seeing 20 years with them.
 

Superman

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I'm weird about words. I hope this is taken as in intended. The phrase, "be careful with" just doesn't apply to foods and warfarin in my mind. "Be careful with" is asking your five year old to set the table with glass dishes, or handling a volatile substance that has a good chance to combust.

With warfarin and food, just don't be stupid. Don't binge on foods that might interact, but if you must binge, make sure you test at appropriate intervals (weekly, if home monitoring), and be aware of what might have triggered a change in INR. The bolded is so when the Coumadin clinic goes to adjust your dose based on INR changes, they have complete knowledge of what triggered the change in level. You're not going to get in trouble for full disclosure. They won't take your meds from you and leave you on your own if you miss a dose. They just need to know that this increase or decrease has an explanation, so we can adjust the dose with that explanation in mind. An unexplained one point decrease in INR will be treated differently in dosing than a one point decrease in INR explained by a missed dose.
 

dick0236

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dreamy885;n875698 said:
Last week I had my consult with my surgeon and he wants to try and repair the mitral valve, he also recommends a mechanical valve. I'm so torn, because with my multiple defects, can he really guarantee that I wouldn't need surgery again for another reason? I'm 31 years old (happy with my 2 kids) and the thought of spending the rest of my life on warfarin puts me into a panic attack. I've read through several posts and have seen how many are living a normal life on coumadin and that comforts me, but I hate the permanence of it.
Welcome dreamy885. You will find this forum a valuable resource for information and support. Like you I had two little kids (boys) when I had the surgery, at age 31. Back then I wasn't sure I would see them grow up....even after the surgery. The good news is that I saw them grow up....and my grandkids grow up....and now watching my great-grandkids growing up.

Only mechanical valves where on the market when I had the surgery so I never had to go the the "mechanical/tissue" decision......thank God.

Warfarin is not nearly the "boogie man" that many make it out to be......especially many doctors.....or Aunt Sally who knows somebody who knows somebody who had a grandpa that had a very bad experience wirth wafarin back in the 1970's........old wives tales hang around for generations.....LOL.
My own experience with PCP's and Cardiologists is that they are used to dealing with warfarin patients who are "old' and who have issues with the drug due to poor INR education, inattention to INR therapy, medicine costs, interaction with other meds (they are usually on a bunck of them),.....etc, etc. Even tho I am also old (now), I have no problem with the drug or docs....they usually defer to my dosing management.......and I am very aware of the simple warfarin rule, "take the pill as prescribed and test routinely".

Do your homework and make the decision that is best for you.....both in the short term.....and long term. Many OHS patients tend to downplay the "long term".
 

pellicle

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dreamy885;n875717 said:
Does anyone know why they don't do homografts much anymore? I've seen several posts where people are seeing 20 years with them.
guessing here (as I had a homograft on my second surgery) that
  • they have not proven to last longer than tissue valves
  • handling them during surgery is of the utmost delicacy and the slightest touch will effect the outcome
  • sizing is more difficult because you need a selection on hand and patient / prosthetic mismatch is critical
There seems to be a trend on people having a head full of absolutely wrong ideas on warfarin, so Please go read this thread:
http://www.valvereplacement.org/forums/forum/anti-coagulation/875559-random-questions-from-a-new-coumadin-user

and my blog post here:
http://cjeastwd.blogspot.com/2014/09/managing-my-inr.html

also in my view if you are not insured then managing your own INR is actually very cost effective (cheaper than the internal billing charges I see on insurance). I pay for everything myself (I'm an Australian and we don't have the same sort of odd ball system of health "care" that they have in the USA) and it works out to about $6 per test.

Lots on my blog.
 

Zoltania

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dreamy885;n875714 said:
A couple other things I'm worried about with warfarin; (the ladies will have to help here) Does it affect your menstrual cycle?
I was only on warfarin for three months right after my surgery, so I don't have a lot of data points, but my cycle was not affected during that time; duration, flow, and interval were all normal for me. The only unusual thing that happened was that I got my period early while still in the hospital after my surgery. (Just what I needed to add to the experience!) My GYN said it was probably due to the stress of the surgery and that it was nothing to worry about.
 

DachsieMom

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Mar 3, 2015
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CT
I was 41 when I had surgery. It does affect my cycle - it is very heavy now. I became anemic, so went on iron pills. If I get a migraine or cramps, I take Tylenol and it's fine. Warfarin is not a big deal. I did not have a tubal ligation before surgery. I drink rarely, but it doesn't seem to affect my INR. Same with veggies. I eat them occasionally with no issue.
 

dornole

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I'm only on 325 mg aspirin but it did make my cycle very heavy (or it just happened to get that way . . . ) If you are done having kids, having an endometrial ablation could be a good option if this happens to you. In my opinion, best thing ever. Only trace bleeding now and it doesn't mess with your hormones. I imagine it would be doable on Warfarin with planning. Outpatient procedure with no recovery.
 

alpha 1

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Just to let you know if it was possible to go mechanical for me, I would, cuz I went tissue but I guess it worked out because I ended up with cholesteatoma, a weird condition that they have to drill through your mastoid to get it out so all the digging in my head would probably be an issue. But I'm facing 2nd surgery or tavr very soon, not happy about redos not looking forward to any of it, just want to live my life. If I didn't have 4 other surgeries to get, the on x sounds very good to me. I'm just sayin I've been through it once have to go through it again and just wish I could get something that would never have to be replaced. It is your decision only you can decide. Good luck with your decision.
 

Protimenow

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Warfarin isn't that big a deal. This makes your clotting time longer than it would be if you weren't taking warfarin. For a small cut that would take 10 seconds to clot, a person with an INR of 3.0 would, theoretically, take 30 seconds to clot. For myself, there were very few cases where this has been much of a problem. (I've had some pretty colorful bruises over the years - and these may have been more prominent than they would have been if I hadn't taken warfarin, but these weren't worth worrying about).

I certainly can't answer questions about menstruation. However one thing that strikes me is your questioning about birth control -- why not keep a few dozen condoms near your bed? Your husband or other partners should be part of this, too.

At your age, I would strongly consider mechanical valves, for many of the reasons that others have already pointed out - scarring, risks of repeat surgeries, etc. Going through life clicking away shouldn't be that big a deal.

Good luck with your decision.
 

dreamy885

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Apr 21, 2017
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Des Moines, Iowa
Well I talked to my cardiologist again and then he spent a long time talking with my surgeon (since they weren't agreeing on a valve choice.) After talking, they both feel mechanical is the better choice for me. Being 31 could mean multiple surgeries (with tissue, and this will be my second OHS) and scar tissue becomes a problem then. We're crossing our fingers that he is able to repair my mitral but he wont know until he's in there. I'm relieved to have a valve type picked out, I was worried I was going to have to flip a coin at the hospital! I've been reading every day on different posts and you all have helped ease my fears of Warfarin, so I thank you for that :)
 

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