New AVR member, just now finding you guys! ONX valve

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Fran

Guest
Hi, my name is Fran. I am (almost) 46, female, mother of three amazing kids. I was dx'd with a leaky valve three years ago, but it was only in March '07 that my bicuspid was discovered along with the ascending aortic aneurysm. Dr. John Armitage encouraged me to receive the Onx valve. My surgery went beautifully, I was home and so strong in just a few days. But had to return five days after due to a clot in my upper right arm. That was removed (hurt more than the sternum!) and I've had to have a bypass on that upper arm this past July. 24 metal staples in my upper leg where they harvested a vein for it - I cried! :rolleyes:

My issues have popped up here and there, even though I regained a very healthy lifestyle again, just like Dr A promised (I love that man!). I do treadmill, bike, lost 60 lbs and feel like a million bucks. HOWEVER, the Coumadin I was on to address the arm clot put me in ER in Feb because our GP (he didn't know better) gave me Z-pack for flu symptoms and my INR shot up to over 13. Fresh frozen plasma and Vit K took it back down within a day, and that was when I went on the Plavix study. The whole idea of the Onx valve for someone my age is to lessen usage of Coumadin.

Plavix and aspirin, however, just landed me in ER again with a horrendous stomach ulcer over T'giving. Had to receive 4 units of blood but the MIRACLE was them finding a clot in my left ventricle - "vegetation" is what it's called, ugh. Heparin drip for a week to dissolve that, TEE's and scopes for the clot and ulcer updates. I am scheduled to start Coumadin again (dread it, as my INR last year was all over the place even though I was a really good girl the way I ate) start Coumadin again once ulcer is checked on 12/24.

My wonderful cardiologist says I can get a home-monitoring unit. We have a fantastic Coumadin clinic but it's many miles from my home (rural area).

My husband and kids (2 still at home, one in Coast Guard in Michigan) have been so supportive. My family of origin, however, except for one faithful younger brother, has been nothing but a nightmare - very abusive situation that they don't want to stop even in light of surgery/medical history.

I sometimes have 2nd thoughts about the mechanical valve because my bloodthinners have caused me all of the emergencies since the surgery. But to face another valve replacement later on - that stinks, too. I am hoping somehow this time around the Coumadin will be managed better. I am taking Lovenox 60ml shots to the belly twice a day right now, that can get old, but better than "vegetation" in the wrong place.

I am so glad to find this forum! I don't know why I didn't Google it before.

The right arm is as good as new, thanks to Dr's Brad Ryan and Robert D'Addio who did my surgeries. I almost lost it last year.

Many close calls between the aneurysm that didn't blow, the arm, the bleeding. But still here, more determined than ever.

Thank you for this fantastic forum. I've been a member of a forum of childhood abuse for some time, and it's a marvelous thing to share stories and understand that every day is a new chance to spread some compassion and empathy. :)
 

skeptic49

VR.org Supporter
Joined
Aug 8, 2008
Messages
2,987
Location
Philadelphia, PA and Cherry Grove, Fire Is. NY
Welcome to VR, Fran! And WOW! What a story! Sorry to read about all the bumps, medical and otherwise, but you sound like you're in good spirits. Having a supportive hubby and kids helps I'm sure. Like you, I just found out about my bicuspid valve and aneurysm almost four years after I was initially diagnosed with AS. I'll need surgery probably soon. There are some real knowledgable people here who I'm sure will help with suggestions in regard to ACT...so be sure to visit the anticoagulation forum and check in.

Best wishes,

Jim
 
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Fran

Guest
Thank you, Jim! What a nice welcome! I was just telling Jen on her thread that you get your life back. You really do. I was so depressed and dull and that's just not me before the surgery. Couldn't do my steps inside the house, getting the mail was horrible, etc. Hanging clothes on my line or washing windows, oy! And I'm out on our rural road with friends in the community beeping at me now as I jog/walk and I love our new Y, many friends there. The setbacks are just inevitable as we still have this diseases it's not like we've gotten totally normal bodies, but hey, much improved! The staff at our hospital (I'd gone up to Johns Hopkins to see Dr Duke Cameron and Dr Thomas Traill as well, but dread the commute for visits or surgery from here, found my hero Dr Armitage 20 min's away at MWH)...where was I , OH YEAH, the staff at MWH have made every stay as pleasant as possible. I tell them all that all the time. Nothing to fear but fear itself, really, and the unknown. You have a great day! Our trees are iced over here in southeast VA, my son is buried in deep snow on western shores of Michigan, brrrrrrr!
 

Ross

Observer
Joined
Dec 16, 2001
Messages
25,981
Location
On The Hot Seat
Coumadin again (dread it, as my INR last year was all over the place
We have a fantastic Coumadin clinic.
I sometimes have 2nd thoughts about the mechanical valve because my bloodthinners have caused me all of the emergencies since the surgery. But to face another valve replacement later on - that stinks, too. I am hoping somehow this time around the Coumadin will be managed better.
Fran welcome to the zoo!

Please read your quotes above. What do you see? Do you know why your having so much trouble with your Coumadin? Quote number 2 is the answer!

Please come down to the anticoagulation forum when you start up again. We'll help you get it straight. Home testing would be a real bonus plus for you. We highly encourage it.

The largest single problem with Coumadin and anticoagulants (Not blood thinner! It doesn't change the viscosity of your blood, it only hinders the clotting action) is the so called professionals don't know how to dose and manage it properly. There is one man and this forum trying despretly to change this. Al Lodwick is the man and he's taught many of us in this forum.
You'd be advised to go have a read at his site too:

http://www.warfarinfo.com/warfarinfo.com2.htm

Also, take a gander at this site:

http://www.aafp.org/afp/990201ap/635.html

Like I said, come on down to the anticoagulation forum and we'll help you get it straight and stable. It's not rocket science, but the way these people manage others, you'd think it is.
 
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Phyllis

Guest
Welcome, Fran. I'm so glad you found us and I am sure you will get all the support you need for your Coumadin regiment right here. I admire your attitude and wish you the happiest of holidays.
 
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Fran

Guest
Thank you, Ross! and Phyllis, too! My cardiologist is very supportive of my getting the little machine once I'm good to go on the Coumadin. I went from one clinic to another last summer, what I don't get is that Lisa, the one Coumadin nurse who set me up, my numbers were so good (and I'll get to the right page about this as you suggest!) but then when she left for nurse prac training, and I moved out to the Medicorps clinic, my numbers went nuts and I wasn't doing anything differently! Sort of like riding one horse and hey, I'm GOOD at this and then you get on a bronco with a burr under his saddle and it will make you wary! Finding this forum now as I go back on the Coumadin is a godsend. I'm somewhat paranoid but feeling very validated here about the ???s I've had.

This site is fantastic. They need to hand out the URL when they set you up for surgery!
 
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Karlynn

Guest
Welcome Fran!
As Ross said - most of the problems associated with Coumadin are due to poor management. Get a home unit and learn how to dose yourself. It's not hard and studies are starting to show that those that home test and self-dose have fewer incidence of clot or bleed than other forms of management. Many of us home test here. Read the stickies in the Anticoagulation Forum and make yourself at home.
 
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Fran

Guest
You just had a birthday, Karlynn! Thank you so much for your testimony about the home-testing. I figure I can't get it any weirder than it was with the clinic, as nice as all the pharmacists testers were there. It had been A-okay with Lisa, the nurse, and then kept rocketing with the clinic. Some sort of "management" issue there for sure.

Happy Fiftieth! a little bit late. :D
 

zipper2

Well-known member
Joined
Feb 7, 2008
Messages
2,492
Location
Canada
Fran,Want to welcome you and big hello.

You definately have entered the right place for help.

So many great people to help you over this detour.

Glad you joined,looking so forward to all your posts:)

zipper2 (DEB)
 

Teresa

Well-known member
Joined
Jun 15, 2008
Messages
126
Location
about 40 miles west of Boston, MA
Fran, thank you for posting your story. Your positive attitude, after all you have been through, is such an inspiration to all of us in the waiting room. I am soo glad that you have found VR .com!
 
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Dawn-Marie

Guest
Hi Fran ~ I know nothing about Coumadin or it's management, but i wanted to extend a warm welcome to VR. It's nice to have you here. I'm sure you will find plenty of people here that can help you with your Coumadin problems.

Best wishes and Happy Holidays!

Dawn-Marie
 
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Jay

Guest
Hi Fran. It may take me a while, but I have quite a few thank yous to post to forumfolks. I appreciate you writing about the challenges you've had. I go for a surge consult on Jan 15. BAV with a plump aortic root. Seeing your positive outlook shine through despite some speed bumps helps boost a pre-surge newby like me. Hope you are doing well. Jay
 
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Curtsmum

Guest
Hi Fran, just wanted to say welcome to the forum. You have been through so much and such a positive attitude. All the best for the future.
 

bvdr

VR.org Donator
Joined
Mar 13, 2003
Messages
4,069
Location
Pinehurst, NC
Welcome Fran! I've been on warfarin for almost 6 years now and self-testing for about 5 1/2 years. It gives you so much better control and you don't feel so tethered to labs and doctor's waiting rooms. I'm sorry about all the problems you have encountered and hope that is now behind you. Betty
 
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