hello everyone

[bluebear]

Hello,

I am a new person to this web site as well as a lot of things. I found out about my heart issues about two years ago when I was 33 and have been (quite frankly) too scared to really look into things, so I have wasted a lot of useful time to learn about this stuff. I figure I`ve got a year to go before surgery and thought I should start asking you guys some questions and join in some of this stuff (although I`m not a very good computer user). I`ve got some questions, but don`t really know the right ones to ask. Should I have surgery locally in Lexington, KY or go to Cleveland Clinic? Anyoine else near Lexington? Can I really chose which valve to use, or do I follow what the doc says?

I`m confused , but looking forward to getting to know some of you guys.

Thanks,

 

[Harrybaby666]

Welcome Bluebear

Welcome Bluebear

Hi There bluebear,

Welcome to this wonderful website. I am only 3 years older than you and I am pretty much in the same boat as you are, and I thought it would be important for someone right around your age to welcome you. The people on this website are a great bunch of people, all with the same thing in common: Heart Trouble. They have helped me in sooo many ways that I can't begin to name them. You did an awesome thing for yourself by signing on to Valve Replacement.com. I just wanted to welcome you to this website, and if I can help you in anyway, just feel free to private message me or reply to my reply...Welcome, and Take Care, Harrybaby666

 

[bvdr]

Welcome, Bluebear. We are very glad to have you join the family . I don't have a bi-cuspid aortic valve but there are plenty here that do so you are in good company. I can't think of anyone off-hand that is from the Lexington area but there may well be.

As far as where to get your valve surgery? Well, Cleveland Clinic is number one in the USA for heart surgery so that is usually a very good choice. I live 5 minutes away from a very good hospital that does valve surgery .....and has a very good reputation....but I still went up the road a couple of hours to have my surgery done at Duke (which is ranked #3). I had my follow-up care here locally and it worked out well for me.

As for valve choice...you can sure state your preferences but your surgeon can, and might, opt for something else once he gets inside and evaluates things close up.

Others will be along shortly.

Are you getting close to surgery? Are you symptomatic? Tell us a little more about yourself if you have a few minutes.

 

[Sherry]

Welcome to our site, Bluebear. Ironically, I was just in Lexington this past weekend. Usually make it over there once per month. (I live in Evansville, IN) In regard hospitals, isn't Jewish over in Louisville a good one? If memory serves me, it seems they did the first artificial heart transplant there back in the eighties. But, hey, glad to have you onboard, and I think you'll find everyone very accommodating and friendly. It's so nice to have others who have had similar experiences and can share their wealth of knowledge: something you can't get from any other source.

 

[bluebear]

quick reply

quick reply

Hello again,
Wow, I`m already impressed . I have never been in a chat or forum or whatever else they are called, but I`m excited about this. Thanks for the welcome already. A little more about myself:

I was basically an egghead through school, never interested in sports. After I graduated, I started weightlifting and bicycle riding, and soccer, and basketball. I recently learned that I really shouldn`t do any of those, so now I run. However, I am getting worried as I have not been able to complete my usual 5 miles recently. I am still trying to convince myself that I am asymptomatic, but am not so sure anymore. There is a breast cancer 5K run this weekend that I intend to take part in.
Anyway, I am a sales rep for a factory, which means I travel around by car all the time. I will be in Ohio tomorrow, Indiana Thurs, and I occasionally make it to NC. My wife and I want to go to New England this fall.

I had my first full understanding of my situation 2 years ago and one month ago had a check-up where I was told that the results were not good. I am expecting about one year to go, but who knows?

Anyway, its great to hear from you guys, thanks.

 

[Ross]

I do hope you've checked with your Doctor about the running. I think if I were you, I'd throttle back until you get fixed. Don't need you running and collapsing dead anywhere. It could happen.

 

[Susan BAV]

Hi Bluebear -

I had my bicuspid valve replaced nearly a year ago. I knew I was having symptoms but I didn't realize I was having as many symptoms as I was until so many unpleasant things went away after I got my new valve! I am 42 and I received a porcine tissue valve. I'm happy with that decision. Some my age would choose a mechanical valve. There are several things to consider before you make your choice. You can do searches on that and other information on this site. I'm pretty computer-illiterate too but you'll get used to this site. Welcome to you and your wife! Best wishes also!

 

[ALCapshaw2]

Hello Bluebear,

You can check out hospitals *by procedure and location* at www.HealthGrades.com

How did you learn you have 'heart issues'?
What tests were done? By whom?

For starters, I recommend that you get copies of all of your test results. There are links in the Reference Forum that can lead you to information on what all of those terms / numbers mean.

'AL'

 

[hensylee]

Hi Blue - come on in and sit with a cuppa something and read away. Every question you can imagine is answered in here somewhere, but if you ask anything it will be answered right here quickly and you won't have to look it up. Right now this is the best place to be. As any dr would tell you, talk to others who are in the same boat as you. Welcome

Betcha got first name, don'cha.

 

[epstns]

Hi Bluebear, and welcome to The Waiting Room -- the virtual waiting room where many of us await our turn at valve surgery. I'm a bit older than you (mid-50's) and also have a bicuspid aortic valve. Mine is stenotic, or becoming calcified and inflexible. At this point, I too believe that I'm asymptomatic and still run 20+ miles per week -- just at a slower pace than I did 5 or 10 years ago. I would echo the advice of others in suggesting that you discuss your running with your cardiologist before you continue pressing it. I did that, and so far have been allowed to do what "feels good."

You've come to the premier site for heart valve support and advice, and we're glad you've made the trip. Ask all the questions that come to mind, and review all you can in the posted threads -- there's a wealth of info online here and in the minds of the members.

 

[fyrfytr]

Welcome

Welcome

Hey Bluebear,
Glad you have found this Great Place.
Take Care

 

[Karlynn]

Welcome!

One thing we tend to recommend around here is that you go with what a surgeon recommends, as far as when you have the surgery. If you haven't seen a surgeon yet, I would proceed with that now in order to get that perspective.

I'm not understanding why they would limit your physical activity, but then tell you that surgery isn't an immediate need. In my humble opinion, surgery is needed if they are telling you not to do things. Cardiologists tend to be the "wait and see" people, and surgeons like to act as soon as possible. You want to have something done before permanent damage occurs.

My cardiologist was very conservative and waited, because of my age, to recommend surgery. By the time he recommended it, I was begging for it because I had so many symptoms. It took a long long time for me to recover. I was 32 when my surgery was done and I had a St. Jude mitral valve put in. Next month, that will be 13 years ago. And I still wish it had been done at least a year before it was done.

Symptoms can sneak up on you. Fatigue, shortness of breath, palpitations, water retention, chest pain - are all symptoms to watch for. But then some people can be asymptomatic, have a replacement done and find out that the valve was at it's end.

Another important tip we give here is to keep copies of all your tests and reports.

Welcome again. You found the biggest support group you will ever have for this issue.

 

[Marguerite53]

Welcome

Welcome

Hello Bluebear,

Welcome to this wonderful site. I am in waiting for BVR. I"m older, 50 and have only mild regurgitation -- mine is a stenosis issue. They will monitor the downhill progress of the aortic stenosis to a certain point and then I get my date with the surgeon.

Please do as Al suggests and get a copy of your echo reports -- as many as you have had, if you can. That way you can begin to learn the terminology and watch your own progress.

Do get a second opinion if you feel like it. I did and am very happy with my new cardio. I actually have a six month check-up today.

Learn what the symptoms are. Like Susan, I think I am much more symptomatic than I realized and this will be part of what I discuss with my cardio today.

I would also recommend getting an opinion about the running from your doctor. Your note says severe regurgitation. I think severe is, well, a very strong descriptor in this case. Please check first.

Keep coming in with your questions. Many of us are able to learn more from other people's questions and it is an excellent gathering of information.

Good luck and WELCOME!

Marguerite

 

[Georgia]

Welcome, Bluebear!

Welcome, Bluebear!

Glad you joined up.

I can certainly recommend that you get the advice of a surgeon sooner rather than later. My problem wasn't diagnosed until very late in the game - I had congestive heart failure and left ventricular enlargement. I'm lucky in that everything reversed itself and my heart's in great shape now - but it took more than a year to get to this place, and there was no guarantee that the heart would recover so well.

Altho you don't have the same problem I have, any valve malfunction will eventually damage more than the original valve. So now that you've taken the plunge and emerged from denial (we were all there), go another step and get to a surgeon and see what he/she has to say.

We're all with you; if you truly don't need surgery now, that's excellent. But frankly, your symptoms don't sound great. And the deconditioning and increase in symptoms can sometimes be so gradual that you unconsciously accomodate them rather than recognize them for the red flags they really are.

Hang in there and visit often.

 

[bluebear]

thanks, guys

thanks, guys

Hello again,

Thank you so much for your advice and information. I can see that I have a lot to study from here on. I will look up some of the info that has been suggested. I was excited to start here and hear from people. Unfortunately, yesterday our internet provider had phone line problems so we couldn`t hook up. Things seem to be better now.

Some answers to questions:
Am I close to surgery?
The first cardio doc who had a look at me interrupted my first test to tell me I needed surgery ASAP, which terrified me. By my next visit (two weeks later), he had backed off to check in six months. A second opinion was wait and see, and I decided to go with that doc as he has a bicuspid valve as well and probably has done his research. That was a year and a half ago. My last check was not as good , leading me to believe a have a year to go.

As for running, I was given the go ahead for up to five miles, as long as I don`t push it. It was really tempting to push it, but I am not doing that.

Current symptoms: heavy heart beat, get tired in the afternoon, haven`t finished my last two runs.

Questions: I have heard about irregular heartbeats, but don`t know how that actually feels, so any info would be welcome.

Can you make an appointment with a surgeon without info from a cardio doc?

What happened to Harrybaby`s flame?

 

[surfsparky]

Welcome

Welcome

Welcome to this great site. I had my aortic valve replaced a little over a year ago at the age of 32. I too, was quite asymptomatic, except for some tiredness and breathlessness when over-exerting . When you're doing your research about what valve procedure to have, add the Ross Procedure to your list. There is no one "perfect" valve for replacement, it's just a very personal choice. I found it good to look at all the options, weigh up the advantages and disadvantages, and then decide what I thought was best for me.
All the best,
Chris