Yet Another BAV newbie - I'm from NC

[Jan1948]

Hi everyone - I've been reading your posts for about a week and have decided to join in.

I had not undergone a physical exam since 1998. I was feeling pretty good for 63. At the urging of my husband and daughter, I finally caved in. On Nov. 1, my primary care physician discovered a heart murmur. No one had ever told me that I have one.

The cardiologist did a echocardiogram and a stress echocardiogram. This was followed up several days later by a TEE and a heart catheterization. The tests show that I have borderline severe/critical bicuspid aortic valve stenosis - .64 cm2 and a mean pressure gradient of 49, peak of 88. I also have a dialated ascending aorta.

The cardiologist says that I will need to have the valve, aortic root, and a section of the aorta replaced. I have my first meeting on Wednesday with the heart surgeon that I've chosen at Sanger Heart in Charlotte.

I've been doing a lot of research. I thought it would help me not to be so anxious, but I was wrong. I'm pretty much okay during the day, but when bedtime comes, sleep seldom follows until 2 or 3 am.

I have decided to have a mechanical valve. I do not want to have to go through this again down the road, and I want to have the surgery asap. Hopefully the surgeon will agree. I've been trying to get all 'my ducks in a row'.

Hope everyone had a nice Thanksgiving.

 

[jjay32]

Hi Jan and welcome to the forum. There is alot of great information here. It does look like it is time to get fixed. When I first found out about needing surgery down the road, that was all I could think of. It finally dawned on me that if I did everything that the doctors wanted me to do, then it was out of my hands and that I needed to go on living. Althought I do tend to stress some as my annual echos approach (having one tomorrow!!) Keep up informed with what is going on and try to get some sleep!

 

[Bill B]

You and I must be twins! I had almost exactly the same history as you -- no doctor visits for quite a while, never sick, then at age 60 a GP who I saw almost by accident said I had a murmur and needed an echo. BAM! Echo said I had BAV, mod/severe stenosis. Mine started out at 1.1 cm2 but within 9 months was 0.7, like yours, and with similar gradients. No real symptoms, but horrible numbers. I debated mech vs. tissue (my surgeon recommended mech) and eventually decided mech was right. The surgeon said I needed the valve and aorta done within 6 months. I had it done 3 months later. The sooner the better in terms of limiting heart damage from the elevated pressures. Go for it! And don't spend any significant time worrying about how it will go - this is remarkably safe and effective surgery. Also, consider yourself quite lucky to have this found before you got into REAL trouble. I thank my lucky stars and that conscientious GP every day.

 

[Jen]

Hi Jan,

I had my AVR June 7th with Dr. Stiegel at Sanger at CMC Main. I have an Onyx valve, and am doing great, much better than before. I was born with a bicusipd AV. You are in great hand there (in my thoughts). Email me if you have questions about your stay there. I could not have asked for a better group.

 

[Duffey]

Hi Jan! Welcome to the group! I had a great Thanksgiving; all five kids made it home.:smile2:

Like you, I had no murmur, or inkling that anything was amiss until I finally went to the GP for a long overdue annual exam. I was 49 at the time. I had a stenotic, bicuspid aortic valve that apparently runs in the family. We had our kids tested, one came back with a BAV, and when our grandson was born in 2009, he also was found to have a bav. It's funny to think of, but relating my experience no longer has any sting attached to it. That's the beauty of valve replacement. It takes your deepest fears, and all the sleepless nights, and turns it into "not a real big deal." Of course I'm six years out and my equanimity has increased in direct relationship to the passage of time.

Yours will too.:smile2:

 

[Johan]

Welcome Jan. My daughter reminded me the other day that for about a year (6 months before and 6 months after my surgery) all I ever talked about was OHS, valves, tests etc. I spent a lot of time on the internet, especially VR.org and wanted to know everything. Now 2 and a half years later I find that a day or two will go past without me thinking of my new valve. I certainly do not talk about it anymore. In spite of a few bumps in the road my experience was overwhelmingly positive in nature and I wish you the same.

 

[kfay]

Hi Jan, I also go to the Sanger clinic. Started going there in 1990. I had my surgery done somewhere else, but have always used Sanger for my yearly visits and followup right after my surgery. I have a great group of Dr.'s there, you'll be fine. Who is doing your surgery? Are you having it done at CMC main or mercy? I do mended hearts visits to the heart patients at CMC Mercy, so if you are there, I'll probably get to see you. Good luck with everything and if you have any questions, ask away.

 

[Nancy jane]

Hi jan. pretty much the same here. When is your surgery? I too am great in the day but lying there at night I conjure up sorts of thots. But 99 % positive & keeping busy.

The group is great - as this group will tell u. Be your own best advocate & ask - ask & then ask more questions.
Good luck. Happy holidays. Nancy. Jane. St Louis.

 

[Jan1948]

Thank you all so much for the warm welcome. In answer to several questions, I don't have a surgery date as of yet - my first meeting with the surgeon is Wednesday. I have chosen Dr. Mark Stiegel with Sanger Heart in Charlotte as my surgeon, too, Jen. I would imagine the surgery will be performed at CMC-Main in Charlotte.

Like I really need more stress, I received a call from Charlotte Radiology telling me that my mammogram was 'inconclusive'. They want me to come back for another test. I'm almost afraid to have my colonoscopy in a few weeks. My oldest son passed away in 2003 at age 26 of colorectal cancer. All of this is making me scared for my family. I'm trying to reassure them that OHS is not as big a deal as it used to be, but it's hard to stay upbeat and positive all the time. Nights are the worst; some nights the anxiety gets so bad that I feel my heart is going to explode.

I am blessed to have found this forum. I'm sure I'll have many more questions after speaking to the surgeon. Thanks again for the support. Blessings.

 

[Jan1948]

Hi, Dr. Mark Stiegel is my surgeon and we just scheduled Dec. 19th at CMC-Main.

 

[Lionheart]

Jan,
Welcome aboard!
That must have been quite the shock to learn so quickly that you needed surgery. I had 10 years from the time I knew that I would need it until it happened and even then it was a bit unnerving.

It sounds like you've made a good decision on a valve choice that matched your desire to avoid a second surgery, now just focus your attention on getting it done and doing your rehab. As far as the other stuff like mammograms and colonoscopy, I say "Good for you" for taking charge and taking care of the things that you have control over. Maybe talk to your doctor about the sleep thing, this is a stressful time and a good nights sleep will help you get through all of this.
Best,
John

 

[Jan1948]

Forgot to mention that I changed my mind on the valve type after discussing the pros/cons of each with my surgeon. I'm going with a tissue valve. I like to build things for the house and yard - window boxes, trellises, etc. and I'm an avid gardener and cook. Too many sharp instruments in my life and hobbies that I love. If I need a AVR in the future, I should be able to have it done with one of the transcatheter types.

 

[Jen]

Your in great hands Jan. I was very pleased with my experience with him. Prayers for a speedy recovery!

 

[jklump]

Hang in there Jan and get it done. I was pretty much where you are 8 months ago. Trust me and everyone else, the thinking and worrring about it will drive you insane. It did me! But, that is absolutly the worst part. I think about it once in a while, but the thought passes quickly. Get it done and look forward to a long life.

 

[Mom2izzy]

I have a mitral valve repair scheduled for Feb 28. My GP prescribed 2 different medications to help me cope with the anxiety. One to be taken daily that is supposed to be sort of like a mood leveler and the other for specific incidents that cause a higher anxiety level. The only problem now is that I'm afraid to take them. Imagine that...too much anxiety to take anxiety medication! Anyone else out there ever had pharmaceutical help with coping with the anxiety?

 

[Lionheart]

Forgot to mention that I changed my mind on the valve type after discussing the pros/cons of each with my surgeon. I'm going with a tissue valve. I like to build things for the house and yard - window boxes, trellises, etc. and I'm an avid gardener and cook. Too many sharp instruments in my life and hobbies that I love. If I need a AVR in the future, I should be able to have it done with one of the transcatheter types.

Hi Jan,
I can still say the same thing again, even though you changed your mind about which valve type you want. So here it is.

Jan, It sounds like you've made a good decision on a valve choice that matches your needs and desires.

By the way I changed my mind several times before surgery.

Take care,
John

 

[Fundy]

Mom2izzy,

I took some meds about 4 years ago for anxiety, took them for a month. The cipralex worked but it was brutal starting it. definitely a half strength start up for a few days and never on an empty stomach.

Clonazepam though I felt was great to mellow my brain down a bit and give me some drowsiness. My Mum's been on psyche meds for 30 years or more and she claims that clonozapam is the only thing to help with her intense migraines that not even ER shots helped much with. She takes it regularly. some feel its only useful short term. but she swears by the stuff. Helped me for a month too.