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davidswife

Well-known member
Joined
Aug 16, 2009
Messages
179
Location
Mahwah, NJ
Hi,

Just wanted to introduce myself and my husband (who is at a baseball card show today after having a cath on Friday - he would have liked to have gone yesterday but I made him rest ;)!).

My husband, David, is 52 yo and was diagnosed with congenital aortic stenosis at birth. He had two caths at Columbia Presbyterian when he was around 5 yo and 9 yo and has been followed with no other medical interventions other than taking 5mg of lisinopril for about the last 5 years. He had an echo in March of this year which showed no significant change. We recently decided to take up tennis (me as a beginner and my husband not having played since college) and he complained of a pressure on his rib cage after playing for a short time. He went for another echo and a nuclear stress test and then had the cath two days ago. I am not sure of all of his numbers (I am just beginning to learn all the questions to ask after finding this wonderful support group!) but after talking to my brother-in-law, who is a cardiologist and whose group has followed my husband for the last 23 years, I found out that his aortic valve is between .6 and .7cm and he had a mean gradient of 45. From what I've read that is pretty much severe stenosis and we are meeting with a surgeon (who spoke with us briefly after the cath on Friday) on Wednesday and will most likely schedule the surgery at the end of this week or the beginning of next. He's known all his life that he would eventually need to replace the valve so this does not feel like we are rushing into this. His doctors feel that it is better to get it done now before his heart gets any weaker. It will also be easier on our family if he gets this done before our kids go back to school since the hospital is about an hour and a half away.

He will also have a CAT scan on Wednesday to see if a portion of his aorta needs to be replaced at the same time. He will be having the surgery done at Jersey Shore Medical Center in Neptune, NJ and it will be performed by David Johnson, who was my brother-in-law's number one choice to do the surgery and who I have read good things about on here. David (my husband) was leaning toward a tissue valve because he was afraid of bleeding on coumadin but his doctors are recommending a mechanical valve because of his age and after doing a lot of reading here and elsewhere we are now both leaning toward mechanical and the On-X.

Thank you all for sharing and for all your support. I'm looking forward to being able to help and support others with the knowledge and experience we gain as we travel on this road.

Nadine :)
 
Nadine ... I would like to welcome you and David to the zoo:D ... It sounds like he is in very good hands and vavle choice, although personal, sounds good to me .... wishing him all the best ... Godspeed:)
 
Nadine & David
Welcome to the community. I just arrived here yesterday and the people here are fantastic!! They can answer anything and have a true caring spirit for all.

Bill
 
Welcome to VR. Make sure you ask all the questions you may have. We have "been there and done that" so we are prepared to share all we know.
 
Welcome, nadine (& David). I was in the same boat, valve replacement at 52 years old; turned out I had a congenital bicuspid, but by the time I started getting echos done, it was so covered in stuff they couldn't tell. The surgeon is the one who found it!

Good luck with your choice of valve - whatever you choose, is the best for you at that time. I have been on anti-coagulation for almost 2 years, and have no restrictions on my lifestyle. Breaking my arm 8 weeks ago has been more limiting as far as I am concerned!

If you have any specific questions, post them and we'll do our best to answer.
 
Hi there Nadine and to you too David.
My story maybe unique. With no prior symptoms, I was told I needed surgery and 5 days later I had it done. A mechanical valve was given to me because of my age and otherwise good health (I was 45). Did not know anything about coumadin/warfarin, which of course I was put on. I learned everything about coumadin on this forum.

Just thought I'd let you know:
its been two plus years now being on warfarin and I have had, stitches (kitchen related), a black eye (work related) and bumps & bruises (just due to me being clumsy), but life goes on.

It can be a scary thought being put on this drug, but we're here to help both of you to understand this drug.

So please, don't be shy and ask any questions that is on your mind - no such thing as a dumb question. :)
 
Hi Nadine & welcome to the forum & glad that you & your hubby found us! We're all here to help answer your questions & concerns & to let you know that we've all been there & done that!

I'm also glad that your husband decided to go with a mechanical valve because he is still quite young & has a long life ahead of him still. And as for the bleeding concerns he may have, tell him NOT to let that worry him at all. I've been on coumadin for 34 years, have had 3 OHS plus other major surgeries & I'm still around. I also never allowed coumadin to interfere with my quality of life ---- I've lived a very active & normal life all these years.

Good luck with all the upcoming tests & may I say, how lucky you are to have a cardiologist brother-in-law! :) Gish, I wish I had one!

Take care!
 
Nadine and David, welcome. You will find this site very helpful in answering your questions and addressing your concerns. As someone has already said....we have all been there and done that, and as overwhelming as it can seem, it is dooable. The vast majority go thru the surgery and then live a normal life.
 
Hey everyone! Thank you so much for the warm welcomes! David is home from the baseball card show but is watching the Yankees now and putting his purchases into his albums so I haven't gotten him over here yet to meet you all (although I've tried:(). Hopefully he will post his own little intro and thank yous later.

Yes, I am very thankful for my brother-in-law, and not only because he is a cardiologist but because he is a really great guy - down-to-earth, unassuming and more like a brother than a brother-in-law. He is my older sister's husband and I have known him since I was 10 years old. I used to tell my sister (way back when I was 10) that if she didn't want him I would take him! It's very comforting to have someone close looking out for your best interests at a time like this.

Nadine
 
Hi, iam also a new member and am wishing you the best I go Tuesday for surgery!!
the best of luck and the people here are wonderful they will have you relaxed in no time by reading there threads.:)

debhill
 
Checking for signs of Aneurisms before surgery is a sign of a knowledgable and wise Surgeon. For your own peace of mind, ask the surgeon(s) you interview about how many BAV patients they perform AVR on per year. More is better. Over 100/year would be excellent.

You may want to call his office and see if he has used the On-X Valves before. If not, On-X will send a representative to educate him on their valve and 'special techniques (sizing and stiching recommendations).

Have you looked at the On-X websites ?
www.heartvalvechoice.com and www.onxvalves.com
You can call the company for an information package
or to ask questions about their valves at 888-339-8000.
 
Welcome

Welcome

Hi, and welcome aboard. Im also a new memeber to the site, and cant say enough good things about the people here. They are very knowledgeable, and very supportive. Every question ive asked, has been answered here. Take care and good luck.
 
debhill, Rhena and Danny...thanks for the welcome, it's great to be in such good company. debhill, good luck on Tuesday, I will be thinking of you! Rhena, do you know when you will be doing your AVR? Danny, have you had surgery yet?

Al...thank you for the info. David's surgeon (David Johnson, Jersey Shore UMC, Neptune, NJ) is the most frequent user of the On-X valve in NJ as per On-X (I found this info on a thread on this website). He is a member of the Mid-Atlantic Surgical Associates (MASA) which was founded by Dr. Grant Parr and the practice performs over 2300 open heart procedures annually. The cardiologist who performed my husband's cath (not my brother-in-law but one of his associates) said that he would use Dr. Johnson if he needed open heart surgery. We met with him briefly after the cath and both really liked him. We will be meeting with him on Wednesday to further discuss the surgery and I have a whole list of questions for him. I have already been to the On-X website and was very impressed with what I read about the valve.

Thanks again to everyone!
Nadine
 
No surgery yet..they are monitoring a dilated aoritc annulus. Went for follow up echo and CTA scan Monday and Friday. I go to see the surgeon Tomorrow, and Cardiologist Tuesday.Keeping my fingers crossed that nothing has changed.
 
Danny...Good luck tomorrow and Tuesday. Hopefully you will find that everything is status quo. We may get a surgery date tomorrow but, if not, should definitely know by Wednesday when we meet with the surgeon. Please keep us posted and we will do the same.

Nadine
 
Hello and welcome.

Since your still in the deciding phase, I would hope that you'd want to include Coumadin as part of the learning process if your thinking of going that mechanical route.

The two best sites to this day are:

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

That site is run by Al lodwick, a certified anticoagulation expert and now retired pharmacist. He is also a member here, but he's going around the country giving lectures to the medical profession, trying to bring them all on the same page where they should be.

The other site is:

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

Most of the info here is on spot. There are a couple of outdated things in it, but it's good for a beginner to use.

I myself, am a Coumadin home tester and self doser. I haven't changed anything about my lifestyle. I eat what I want and do what I want. Coumadin hasn't been a major problem for me, but it can be a hassle for other procedures. Not so much because of the drug, but because of the lack of understanding of the drug by the medical field in general. For some reason, they just don't get it.
 
Nadine...

Welcome to the forum your going to find a wealth of information and support on this site. If you guys do go with the On-X valve I think your going to be very happy. I had a bicuspid valve with severe stenosis also. I was fortunate that I had no other issues. I had my surgery about 18 months ago and am doing extremely well. Physically I can do so much more now. Prior to the surgery I had chest pain and SOB with moderate exertion. Now I can go flat out with everything I do and I have no issues. I run (when its not boiling outside), play full court basketball, and do conditioning classes a couple times a week. Coumadin is a no-brainer in my opinion, biggest issue is simply remembering to take it.
Im originally from New York but live in Ohio now. Can't speak to Columbia Presbyterian but everything I have heard is teriffic so I think your both in great hands.
Im sure your husband is a great guy but Yankees fan ? ugh.... Tell your husband that there is a Mets fan (yeah we stink this year) who is pulling for him but who think he really needs to rethink his baseball allegiance :)
 
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