New to site - Aortic valve replacement in future

[WayneGM]

Welcome to VR.com. Sorry for the circumstances but glad you found us.

 

[David L]

Hi,

I am new to this site - found it while searching around to learn more about Aortic Valve replacement.

My doctor tells me I will need valve replacement some time in the near future but will not elude to how long. I have a bicuspid aortic valve and have known about a "heart murmur" since I was 12. Despite several echos over the last 10 years no one has ever told me I had a bicuspid valve until September 08. I was feeling poorly after the first of the year - increased palpitations, short of breath, fatigue and some leg pain and swelling. So I decided to go in early and not wait for my annual check and low and behold the valve opening had narrowed from 1.5 cm to 1 cm. In my mind I thought that was a significant change in such a short period of time. So I go back in mid-September to check again. Fatigue continues and some dizziness - I have not passed out thankfully. I am trying to do my homework on best hospitals and doctors - not sure if I have enough faith in my physician at this point since he was going to schedule me for another year until I asked him what the difference was on my last echo. After he flipped through my chart he decided I should come back in 3 months. I live in southern California so if anyone knows of best hospital or how I can go about finding this info. Taking into consideration a .5 cm change in approximately 8 months I just have a feeling this surgery could be sooner than I think and I want to take the precautions now while I have the time to.

Thanks so much. I have be cruising around the other threads and it helps to hear of others stories. I personally do not know anyone that will have or has already had valve replacement surgery.

Thanks again,
Lori[/QUOT

Lori:
You don't say where in so. Cali you're from. I'm from Santa Maria. In august of 08 I went up to Stanford to Dr. Scott Mitchell. I had an AVR and ascending aorta replaced with a Medrtonic Freestyle valve. I chose Stanford because of their work with Marfan patients. Dr. Craig Miller is also there, and one of the best. The hospital is beautiful, and their attitude toward the patient is just great. The called us their "customers" rather than patients.
It's been 10 months now since I had mine done. Today I ran 4 miles, did several pullups, and 75 pushups, and I'm a 70 year old male.
I highly recommend Stanford for a lot of reasons already given-------plus their easy access off 101 north.
Good luck, and let us know how you are progressing as time goes on.

David L

 

[Lorimacm]

Hi David,
I am in Temecula located between Los Angeles and San Diego.

Sounds like you are doing great! I am 44 and at this point couldn't even come close to your activities. The more I read what everyone says the more encouraged I am that this is a minor (yet still freightening) set back to many many years of activity.

Lori

 

[MrP]

In case you have not already found the website for The Bicuspid Foundation, here it is.

http://www.bicuspidfoundation.com/

 

[Lorimacm]

Deanne,
Sounds like your boy has been through alot. Glad he is doing well. Looks like he has fun in the desert.

Thanks for the San Diego info - I will check it out.

Lori

 

[vprnet]

Welcome abord Lori,
i
You will fine many BAV members on this site. This is my 6 month aniversary since my BAV replacement. Thoughts of the surgery and post op recovery is quickly fading but the vast improvement in my well being is with me every day.

Best wishes and do hesitate to ask any quesitons. You will get answers here.

 

[David L]

Hi David,
I am in Temecula located between Los Angeles and San Diego.

Sounds like you are doing great! I am 44 and at this point couldn't even come close to your activities. The more I read what everyone says the more encouraged I am that this is a minor (yet still freightening) set back to many many years of activity.

Lori

Lori:
Living that far south, then maybe UCLA would be your best bet. It was my second choice, but was taken by Stanford after only a 2 week wait.
Both hospitals have a very good record for this type of surgery. This has become more of a routine surgery, with low risk, compared to past years.
I know you must be apprehensive, which is only normal at this point. It was not as bad as you might think if you are in good physical condition to begin with. Hopefully not a smoker, as you need clear lungs to help with the rehab. The one thing that did surprise me was the fatigue that goes along with this. Some days are good, and some days are not. It took me about 6 months to really feel I was getting back to normal.At 10 months post op now I feel better than I have in years!
You'll be fine, and pull through just fine. Many on this forum will tell you that!

Good luck,
David L

 

[Lorimacm]

Thanks David,

I started looking into UCLA and the two doctors names I received from the nice folks here. I just confirmed all my insurance coverage here and it is excellent. I basically can go anywhere in the Country and be covered without any referrals or pre-authorization. I am relieved about that. Next step - I will have all my records from my current cardiologist in a few weeks but in the meantime I am inquiring about appointments for consults. My biggest concern at this point is my symptoms of light headedness, heart palps and leg pain and swelling seem to be getting worse. I am trying to rest as much as I can to see if that helps. But I tell you sometimes lying down and resting is when I feel the worst. Laying down seems to bring on the heart palps and my legs throb. Arthritis runs in the family and I wonder if the legs are the beginning of arthritis or if it is from my heart. When I told my cardio he asked me if I was depressed. I need to find a new one.

Ok enough rambling.

Thanks again!

 

[cherylchapa]

Welcome to the site. You have definitely found a great resource for comfort, hope, and information.

If you are in Temecula, you should check out the Women's Heart Center at St. Joseph's in Orange.

Good luck!