MAYBE #3 OHS in my future...ick

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aliceann

Member
Joined
Feb 3, 2013
Messages
11
Location
Maine
It's been about 6 years since my last post. I have ‘enjoyed’ 39+ years with my Bjork-Shiley mitral valve. I know there have been recalls over the years on valves by this manufacturer, however mine, thankfully, was not on any recall list. The only significant issue that’s developed is a severe sub-aortic stenosis. This past August I had my first episode of LONG lasting afib. Thru a visit to my NEW cadiologist (previous one retired), I found myself back in a pediatric cardio practice...where they specialize in the congential defects that are the root of my problems, dextrocardia included. I also have started experiencing mild shortness of breath. Since I haven't had a cath in 39 years, I now have one scheduled for the monday before Thanksgiving. I have moderate to severe gradients, according to the echo, so they want to see what they REALLY are. The mitral valve implanted in 1980 has always been a bit too large (33mm) for my body...causing the sub-aortic stenosis to worsen over time, and cause the wall of the left ventricle to thicken. I was told this thickening is known to cause arrythmias. Curious to know if there are tiny valve recipients out there....5'2", 90pounds.....and what you may have for a valve. Also, are their members that live in the Northeast US? Where did you have surgery done? I"ve only had mine done at the Mayo Clinic in Rochester, MN. Hoping that in the last 39 years there may be expert surgeons closer to home (Maine).
 

pellicle

Professional Dingbat
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Nov 4, 2012
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Queensland, OzTrayLeeYa
I've no experience with mitral (or your other questions) but having had 3 now myself I can say that:
  • ya gotta do what ya gotta do
  • we get to live longer as a result
  • it wasn't that bad
best wishes
 

Catie

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Jun 17, 2010
Messages
276
Location
Texas, USA
Hi Aliceann. I just returned here after a long absence, since learning that I'll need a second surgery. I can't help with your questions, but I do know how scary Afib feels. Sorry to hear you suffered that. And when I had a cath three years ago, I hadn't had one in 40+ years. I found the experience dramatically improved!

I hope, if you need one for sure, that a stellar surgeon will come to light, who works with an equally wonderful hospital.
 

tom in MO

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Jan 17, 2012
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MO USA
Things have changed a lot since 1980. I know there have been mitral valve posters in the past. Try a few searches of this site, you may find what you need.

I don't know much about hospitals, but living in Maine, I'll bet Boston should have some good ones (lots of money and lots of people in Boston.) Maybe someone can help.
 

dornole

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Jan 5, 2014
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Location
Minnesota, US
I had my mitral valve repair 17 years ago so far so good. My team has always said LV dilation means it’s time for surgery. Are you headed back soon? Your situation sounds pretty complex.
 

aliceann

Member
Joined
Feb 3, 2013
Messages
11
Location
Maine
I had my mitral valve repair 17 years ago so far so good. My team has always said LV dilation means it’s time for surgery. Are you headed back soon? Your situation sounds pretty complex.
I will find out alot more on the 25th when I have my cath. I think it's the dextrocardia that adds the complexity. I've searched this forum for others with this condition...none found.
 

jcgtok17

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May 13, 2017
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62
Location
Tokyo, Japan
Aliceann, Not certain wrt mitral valves, but here in Japan (perhaps the last of the "tiny people") Edwards Lifesciences aortic valves are #1 with avg. size 21mm. #JCG
 

aliceann

Member
Joined
Feb 3, 2013
Messages
11
Location
Maine
OK....I had a double cardiac cath on 11/25. Procedure went well, and I was home in time for Thankgiving holiday. I feel like I'm still in limbo-land. Congenital doctor/surgeon agree that surgery is warranted. My mitral valve is great, but has panus? (debris) on it, such that it's causing my sub-aortic stenosis, and subsequently the left ventricle wall thickening. However, my adult cardiologist is hestiant about surgery, as this would be my 3rd...lots of scar tissue... Even upon discharge from hospital there was no clear follow up plan. I spoke with a couple of the wonderful nurses, and they leaned toward the congential doctor/surgeon recommendation, as my cardiac issues are all congenital, and that is their area of specialty. The cath revealed NO calcification or blockages of any kind. There doesn't seem to be any ADULT congenital cardiologists in my area...yet. The congenital office I went to treats older patients as well as pediatrics, so I"m OK with that.

Thoughts?
 

spartangator

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Jun 11, 2007
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Austin, Texas/Dublin, Ireland
Thanks for the update. Glad you're at least able to get a range of thoughtful opinions. I'm sorry things remain unclear, but I hope there's some clarity in a follow-up visit or with another provider who could review your data.
 

Catie

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Jun 17, 2010
Messages
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Texas, USA
Congrats on no calcification or blockages. :)

In 2016 I became convinced that surgeons are more knowledgeable than cardiologists about when it may be time for a surgery. It's not lost on me that surgeons are pro-surgery, and that a third surgery is more difficult and risky than a first op. If I were facing this prospect, I'd want to select someone who's done as many similar--or equally challenging--heart procedures as possible. Are there possibly any other specialist surgeons from whom you could seek a second opinion?
 

aliceann

Member
Joined
Feb 3, 2013
Messages
11
Location
Maine
Hello again... We've had a couple more consults, and now everyone is on the same page. Surgery is scheduled for Jan 21, 2020. While it was not an emergency situation, I just needed to get it done for my own piece of mind. Surgical team is all specialized in congenital defects, and my husband has an amazing support team here at home too. Compared to 39+ years ago, the amount of real listening to my concerns has been outstanding. I expressed that while the tubes, etc. were a necessary 'evil', what I disliked even more was waking up freezing cold and shivering. I was assured that I'd get warming blankets (even extras) before leaving surgery. Looking forward to getting my energy level back. I have grand babies to play with and chase around.
 

Catie

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Jun 17, 2010
Messages
276
Location
Texas, USA
How wonderful, that you have felt so heard this time! It's so good, knowing you've found the right specialists for your surgery and that you and your husband have good support. Congratulations on finding the right team and getting your procedure scheduled. Hope you'll keep us posted.
 

tom in MO

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Jan 17, 2012
Messages
1,381
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MO USA
Good luck Aliceann. My hospital gave me warmed blankets and a special water-jacketed heating pad for my arm. It didn't like being stretched out and tied down for 5-7 hours. :) I really liked the water heated pad, but couldn't take it home :(
 

tommyv44

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Jan 27, 2018
Messages
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Location
Florida
Congrats on no calcification or blockages. :)

In 2016 I became convinced that surgeons are more knowledgeable than cardiologists about when it may be time for a surgery. It's not lost on me that surgeons are pro-surgery, and that a third surgery is more difficult and risky than a first op. If I were facing this prospect, I'd want to select someone who's done as many similar--or equally challenging--heart procedures as possible. Are there possibly any other specialist surgeons from whom you could seek a second opinion?
Sometimes I just don't get it!

OK let me ask a surgeon if I need surgery....please I can't take it!

Why would you do that? You need to be your own advocate get many opinions from Cardiologists and maybe even ask your GP if you have a good relationship with him or her. You are going to be laying on that table; not him....he's going to be paying for his beach house!

Related sutuation....I was a lifelong tennis player and I tore my rotator cuff really badly about 12 years ago and I went to an ortho surgeon for his assessment....a good one with a flawless reputation...he told me one of the worst tears he's seen and I needed surgery yesterday LOL!

I asked a friend who was a Phys. Therapist what she thought and she said that I could always get the surgery but let's try therapy first....well I never got the surgery and my shoulder is pain free today.....with hardly any range of motion issues!

Same surgeon a year later tells me after another tennis injury, torn meniscus, I need immediate surgery....he didn't remember me . Same thing....no surgery just therapy and now I'm pain free and couldn't even tell you what knee it was.

I know knees, shoulders and hearts are different....but please stop asking surgeons if you need surgery. Good Luck......

Tom
 

ILoVeNY25

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Joined
Mar 23, 2002
Messages
368
Location
Flushing, Queens, NY
Hi Aliceann,
I'm an old member of this site but 4 years ago I had my 2nd and 3rd heart surgeries 4 months apart. Its not easy but you'll get through it. I'm looking at my 4th surgery in the next 5-7 years, hoping valves even last that long. Wishing you all the best!
 

aliceann

Member
Joined
Feb 3, 2013
Messages
11
Location
Maine
Hi Aliceann,
I'm an old member of this site but 4 years ago I had my 2nd and 3rd heart surgeries 4 months apart. Its not easy but you'll get through it. I'm looking at my 4th surgery in the next 5-7 years, hoping valves even last that long. Wishing you all the best!
I looked for your 'story' but couldn't find it. I'm interested in why you needed so many, and are still facing a 5th. It sounds like you were fairly young for your first. I was 8. My second was 10 years later when I received my mechanical mitral valve. It's certainly stood the test of time. 39+ years, 2 successful pregnancies & natural deliveries, and literaly thousands of walking miles for charity. I'd love to know your story should you wish to share.

I'm not really anxious about the surgery....yet. Every time I raise a concern, it's addressed...so that gives me great comfort.

Thanks
 

dick0236

Eat the elephant one bite at a time
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Feb 10, 2007
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louisville, KY USA
Hi Alice. I've not commented on your posting since I didn't have much to add but a few of your comments about your earlier surgery made me smile....a little. I do remember "pulling the tubes" as being one of the worst memories of my surgery long ago. FWIW, I recently volunteered to talk with pre and post op patients after OHS here in Louisville, KY. Surgical procedures have changed a lot since when we had our valves replaced.....all for the better. Some patients have no trouble with having tubes pulled.....and none seem to remember it the way I still do. I did a little math and I think you are under 50. The younger patients, some having scar tissue from earlier procedures like you, seem to have little problem with todays surgery.

Good luck:)
 

aliceann

Member
Joined
Feb 3, 2013
Messages
11
Location
Maine
Hi Alice. I've not commented on your posting since I didn't have much to add but a few of your comments about your earlier surgery made me smile....a little. I do remember "pulling the tubes" as being one of the worst memories of my surgery long ago. FWIW, I recently volunteered to talk with pre and post op patients after OHS here in Louisville, KY. Surgical procedures have changed a lot since when we had our valves replaced.....all for the better. Some patients have no trouble with having tubes pulled.....and none seem to remember it the way I still do. I did a little math and I think you are under 50. The younger patients, some having scar tissue from earlier procedures like you, seem to have little problem with todays surgery.

Good luck:)
oh Dick, I think your math might be off a bit....LOL. I'm closer to 60 than 50. I DID take comfort in your statement about newer patients having a better experience with the tube removals than we did. My husband and I visited Louisville for a long weekend this past summer. It was hot, but we liked the area and the people. We visited Makers Mark and Churchill Downs. I even had a couple mint juleps!
 

dick0236

Eat the elephant one bite at a time
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louisville, KY USA
oh Dick, I think your math might be off a bit....LOL. I'm closer to 60 than 50..............
.............We visited Makers Mark and Churchill Downs. I even had a couple mint juleps!
My Momma taught me well. You ALWAYS estimate a lady's age to the LOW side........keeps them from hitting you!!. :sneaky:

Thanks for dropping a few coins at the track........I was never a fan of mint juleps....too sweeto_O
 
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