I've been lurking for a few months...

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M

marvelgirl

let's see:

congenital BAV. Only found out about it earlier this year. I've had a murmur for at least 10 years, but none of my doctors ever told me it could lead to this. I've been seeing a cardiologist for 2 years and she never told me about the valve replacement until January of this year. I am a little upset about this, since I found out after she retired that she knew I had a BAV but never talked to me about it. I never even heard the term until I got a new cardio. Not that her telling me would have changed anything. I'm working on "letting it go".

I've had rheumatoid arthritis since I was 15 and it is now time for my left hip to be replaced. I saw my cardiologists in June to tell her about the hip replacement and she gave it a thumbs down until I've had the valve replaced.
So here I am...slowly freaking out and counting the days.

I'm scheduled for replacement on August 29th. I'm getting the On-X valve.
It's taken me a long time to decide to post but I'm starting to peek out of my denial stage. I wish I could stay in that stage a little longer, but I also wish the day was here already (or better yet, that it was already over).

I am a bit worried about the walking after the AVR since I already have such a tough time of it. I'm worried my recovery is going to be severely hampered because of it. And/or because of all the immune suppressant meds I've been on for the last 20 years. But it has been pointed out to me that I'm a worrier. At this point my list of worries is longer than the one I found on here of what to bring with you to the hospital (thanks to everyone for compiling that, by the way).

Thanks to everyone who keeps this forum running. It's been very helpful in answering questions and quelling (some) fears.

I'm currently getting my iPod filled with comforting music. It's been a great way to keep my brain otherwise occupied. I'll be using music instead of just regular earplugs in the hospital.
Again, thanks everyone for the lists!

Maura
 
Welcome, Maura! I think you are being wise in letting go of the past (re the doctor) and moving forward. Just deal with those challenges one at a time. Wishing you all the best for your valve replacement next Friday, and a smooth recovery thereafter. From all I've read here, you're making a good choice with the On-X valve.

Look forward to your continued posts.

All best,
 
Welcome to the zoo. This is a great group.
I also lurked and freaked and hid in denial for a long time....Everyone gets scared, its OK.
Your IPod with tunes is a great idea, ear plugs just seem to amplify the heart beating and that can be stressful.
 
Welcome Maura. Try not to get into the "what if" game. In just a few days you will get one of your major concernes behind you and then you can address the hip concern. There is only one way to eat an elephant, "one bite at a time";). I hope you have a noneventful surgery and a quick recovery.
 
Hi Maura and welcome to this amazing forum.
I wish you all the best for your up coming surgery.

We're here if you want to talk about your worries and answer your questions.
Heck, you can even vent on us and we'll still support you :)

Nice to hear from you

P.S.
Happy belated Birthday
 
Hi Marvelgirl, if it helps you any, having your hip replaced is going to hurt worse then the open heart surgery. I had my left hip replaced due to steroids (Prednisone) that I was on for 5 years to treat my lung disease, killed my left femoral head. I could not put weight of any kind on it without screaming in pain.

The heart surgery is rough, I won't lie, but it's doable and yes, you may have a little longer recovery time, but if you don't get taken care of, none of your other problems are going to matter as you won't be around too much longer. Better to be on this side of the dirt.

Welcome to the funny farm. Bring on your comical side and lets keep you company until your date arrives. :D
 
Welcome, Maura. I placed you on the calendar so now it's "official". I'm glad you decided to post and that your 'lurking" provided you with lots of good information. We will be here to see you through the surgery and the recovery.
 
Hi Maura and welcome. As far as walking after surgery is concerned, you might consider talking to the people at your cardiac rehab place before you have the heart surgery. Call ahead and I'd be surprised if they wouldn't tell you something about your options for walking and other exercises after the surgery. The nurses I had for cardiac rehab were excellent.
 
Hi Maura ~ Welcome to this site. I had a really loud heart murmur since i was 5 years old, but the doctors told me it was "innocent". In 1997 they found i had aortic stenosis, but they didn't find that i had a congenital bicuspid valve. Even then, they said the aortic stenosis was mild and would never bother me and never bothered to check it again. Then, last November, i went into severe congestive heart failure. I'm still waiting to see if i'm a candidate for the percutaneous aortic valve in Cleveland or NYC. I'm sort of freaking out myself since it's been since November and they say it is now very critical aortic stenosis and needed to be done several months ago. My doctor says i'm a walking time bomb, but i need to have patience!

My best wishes and prayers are with you for a successful surgery and your hip replacement in the future.
 
Welcome, I am sure you will find the same strength and support I did at this board. Find a comfortable peaceful place in your life, and put yourself there and envision your self there after your procedure, a positive attitude will take you far.

God bless.

Keep smiling,

CJ
 
Good luck. I just had the ON-X valve installed due to aortic stenosis. I am 2 1/2 weeks out and I promise, things do get easier. Ask any questions, I have found that someone here has the answer in most cases.

Eric
 
Hi Maura. I've been out of town for awhile and just saw your first post. I hope you come back to us!

I am here in town!!! My surgery was at Good Sam. Where are you going for yours?

Can I help you in any way??? Please let me know. I'm an incurable optimist!! Ask anyone here! :D:D Many of us get this news as somewhat of a surprise, and cardiologists are known for their inability to offer truly helpful information! You are not alone in your consternation.

Best wishes!

Marguerite
 
Marvelgirl, so glad you posted,we all get scared and denial
was big for me 16 years ago,course i never had these great bunch
of people around then,so i was a MESS!!!
It's going to be alright,any concerns ask away......someones always got
the answer for you.I found the wait soooo hard for me.
I wish you all the best on the 29th and hope someone can keep us updated
on you....We are worry warts,i am anyhow.So wishing you again the best
and for a smooth recovery afterwards.:)

zipper2 (DEB)
 
Hi Maura,
Wishing you all the best on the 29th. Sounds like it will be here pretty quickly. You will have a lot of things to do this week to get things ready so that when you come home you can focus on healing and get to feeling better. Take care and get those tunes loaded and take comfort in knowing we are all thinking of you.
My info. says I am having surgery on the 28th but that has been cancelled so please disregard!
Jannette
 
Maura:
Don't worry, be happy! As for the recuperation period, it'll go by quickly and then you can tend to your hip issue.
Here's wishing the best to you on the 29th. When you can, let us know how you are doing.
Gerry
 
Maura,
I have some of the same fears about walking, but I had my rt. hip replaced with a minimally invasive procedure in 2006 and was fine. A friend with differnent insurance coverage had the regular hip surgery and took longer to heal. If you can push to get the hip surgery done as soon as you have have healed from your BAV your exercise routine will be so much easier.

I bought a recumbent exercise bike and put it in our bedrooom. I rode it and rode it before and after the hip because I had so much atrophy in the muscles of the bad leg that I needed to build them up. I bring it up, because it has a heart rate monitor, and was one of only exercises I could do regularly without pain in my hip. Good luck to you,
 
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