Newcomer

[Soilman]

Although I've been monitoring you guys for about 3 week now, this is my first posting. I'm being told that I have Bicuspid Aortic Valve Stinosis by my cardiologist. I'm going in on Wednesday for a catherization. The Doc tells me i'll know the verdict after the cath. I'm not sure what to hope for right now. A part of me wants to get the operation over with, yet another part hopes I can put it off a while longer. I'm only 41 years old, and am having no symptons. I exercise regularly (running, some biking and USED to lift weights until my cardiologist stepped in. Guess I'll leave it in God's hands. Thanks for the support guys. This is a great website and has answered a lot of my questions. Pray for the best on Wednesday...whatever it may be.

 

[Mary]

You should know alot more after the heart cath. It's probably best not to worry about it until you get the results, and I know, you're thinking that's an easy thing for me to say!

I'm glad you found VR, and I hope you let us know what the results indicate when you receive them. We can help you through the rest of this process one way or another!

 

[Karlynn]

Welcome! We have many bicuspid aortic valvers here, each with differing stories. Continue to make yourself at home and ask any questions you have.

 

[geebee]

Welcome to our family. I will send some prayers out for you on Wednesday so you get the answer you seek (whatever that may be).

Good luck.

 

[afraidofsurgery]

Intervention

Intervention

Hey, better for the cardio to intervene earlier rather than later! I hate reading posts by members who have tried for years to get their doctors to pay attention to their problems. Sounds like you're in good hands.

I'm 43 and am scheduled for surgery on Sept 7, so I understand your trepidation. But I keep thinking surgery is WAY better than the consequences of not fixing the valve
Patty

 

[Soilman]

I guess the Good Lord was looking after me. I'd had a heart murmmer cheched out about 12-15 years ago and the echo showed the bicuspid problem. However, my doctor at the time said everything was ok and not to worry. So that's what I did. My present doctor recommended another echo about a month ago for another problem and hit me over the head with the results. So, I think I'm in good hand NOW. Thanks for the encouragement guys, and I'll definitely keep you up to date. I expect I'll soon be another regular in the Active Lifestyles forum. I'll be praying for you Patty, on the 7th. Good Luck!

Barry

 

[KAJ]

Barry,

I am kind of like you, my bicupid valve was discovered 4 years ago but not becuase I was having any symptoms. Even at that time, my cardiologist said it may last the rest of my life. To be on the safe side, he still wanted to monitor me every 6 months. I am glad, because a year ago, he noticed things were gradually starting to get worse. In October, he felt the valve was getting worse to point that he started to restrict my activities. In January, I was having severe, I mean severe heartburn . At one point my wife (who is a RN), insisted I go to the ER. Because of my valve history, I was immediately admitted to the hospital. It turned out to be just major heartburn. However, during my stay in the hospital, I had an echo and then a heart cath. Both showed it was time for surgery.

Not to alarm you, just out of curosity, do know if you also have ascending aortic aneurysm? Unfortunately many such as myself who had a biscupid valve also have an aortic aneurysm.

You most certainly be in my prayers this Wed.

Take Care,
Karl

 

[Soilman]

None of my doctors have mentioned an aneurysm, but I don't know if it would show up on an echo. I'm thinking the catherization will show up any other abnormalities, if any. Except for heavey weight lifting, my activities have not been restricted. I have a fairly physically demanding oudoor job. Not so much heavy lifting, but walking around in fields and woodlands in the heat and cold. Except for the usual energy drain of the summer heat, I've felt no symptoms. Thanks for the prayers.

Barry

 

[ALCapshaw2]

YES, aortic aneurism's are usually detected by the echocardiogram test. Several of our BAV patients have also had aneurisms so that may be something to ask your cardiologist (and surgeon) about. I 'think' there may be a tissue condition that is the common denominator. Ask your doc's for more info.

When it comes to surgery, go by the numbers and let your SURGEON make the call about timing. They like to get in there before there is permanent damage to the heart muscle / walls. MANY valve patients report NO symptoms, even when their valves are in very bad condition. This is especially common in well conditioned athletes or others who are physically active. Their bodies are conditioned to be more efficient and they can 'do more with less'.

When your surgeon says it's time, go ahead and get it fixed. The better condition your heart is in before surgery, the better your recovery (and long term outcome) will be.

'AL Capshaw'

 

[tobagotwo]

We've all been through this waiting game, and it's difficult. Especially when you don't feel any symptoms.

However, some fatigue and other things that we tend to push off as getting older or lack of sleep are sometimes there but unnoticed. It comes very slowly and quietly, a thief in the night, and steals your energy tiny bit by bit. After I had surgery, I felt like I was at least ten years younger.

Also, be aware that angina can feel like just a tightening in at the top of the throat, or a jaw or neck discomfort, or a feeling like you've been breathing cold air. It's often not something that would stop you in your tracks at all, but is more often something you can ignore.

Not trying to give you symptoms, but pointing out that they can be subtle.

Hope your results turn out mild, and you have years before surgery.

Best wishes,

 

[TammyM]

I am 3 weeks post op after only discovering my BAV a short time ago. Things moved quickly for me, but I am very glad to have the surgery behind me.

We will be praying for you, Barry! Please keep us updated.

 

[Marguerite53]

Welcome, Barry.

Welcome, Barry.

Hello. Welcome to this wonderful community! Everyone's story is different and we will all be glad to listen to as much of yours as you care to share! I'm in the Waiting Room with several others. Moderate Aortic Stenosis, BAV discovered about 25 years ago. Currently echo every 6 months to a year. In holding pattern. Could need surgery within 6 months, or 6 years.

One thing you might want to do is start gathering copies of your echo results and any other tests they have you perform. It is interesting to follow links listed in the references tab (here at VR.com) and attempt to understand all the measurements and data they collect on you.

Good luck on Wednesday and keep us posted!

Marguerite

 

[epstns]

Hi, Barry!

I've been remiss in my duties as one of the hosts here in The Waiting Room, the virtual room in which many of us await our turns at surgery.

My situation is similar to yours, but diffierent (as they all are). I'm a bit older (57), and didn't find out about my murmur until 3 or 4 years ago, when a doc asked "how long have you had that murmur?" Shock city. Since then I've been monitored every 6 months, and have learned that I have moderate to severe oartic stenosis, and a "probable" bicuspid valve (not clearly visible on echo).

I still jog 4 miles a day at a 9:00 pace, and lift "light" weights (cardio says to keep it to 40-50 lbs., as many reps as I want). So far, my only "symptom" is that creeping fatigue and gradual diminishing of energy that so many of the others have noted.

One of these days it will be my turn. Until then, I'm doing my best to live life as well as I can. After surgery, I think I'll keep doing the same. . .

Welcome. Visit often. Ask questions -- I think the best answers come from the wealth of experience at this site.

 

[Soilman]

I went for the heart cath on Wednesday. Fairly painless experience overall. The hospital staff was great! However, my cardiologist was unable to get the cath through the valve to look at the heart. This probalby indicates a smaller opening and hence a "sooner" than later surgery. However, it wasn't a total loss. The cath revealed no blockages and when I asked about an aortic aneurysm, they said there was no indication of one. I count that as a blessing. I'll be going in sometime next week for a "TEE". This sould give the docs about the same info. as the cath. Keep hoping and praying for the best. I think I've about accepted the fact that surgery is right around the corner, and in a way, I'm anxious to "get it over with" so I can "get on with my life". As for now, I'm just laying around the house recovering from the cath.

Barry

 

[Phyllis]

Glad that the cath was painless and that there are no blockages or indication of an aneurysm. Good luck with the tee and be sure to report back to us! We wish you the best.

 

[Peggy in Alaska]

Barry:

I am in the waiting room, too. Have a different heart valve condition, but my story is similar as I used to run 50 miles a week, and thought I'd be marathoning one day. Was told I had a heart murmur after my 1st child was born, but they said no big deal. Went on with a 2nd pregnancy and began to slow down. Couldn't understand why I couldn't run 10 miles in one workout without being very winded. Had a 3rd child and went on with a reduced workout. Then, during a routine physical with my GP, she suggests another heart echo to see if there was any change in the enlargement which had shown up during a cardio visit many years earlier [where I had gone because of palpitations all the time when I was resting - the cardio said I had nothing wrong]. Echo technician says to me, have you heard of ebstein's anomaly? So, now I sit in the waiting room, and I am in no hurry to be on the operating table. I'm turning 50 so the longer I can hold out, the better. Passed my tests at the Mayo Clinic with flying colors last check-up [in April 2004] so I have to go back the summer of 2006. We'll see how things are then. To make a long story short, active people don't seem to show the symptoms as early as others. My condition was congenital yet no one discovered the actual defect till I was 41, even though I had seen a cardio once or twice during that time.

Peggy in Alaska