BAV in Portland, OR

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C

cpl

Hello all,

I am 41 years old, and was diagnosed with BAV / regurgitation last month.

To summarize, I have always had a murmur and the BAV was eventually detected with an echocardiogram.
I have had no apparent symptoms so far and have done lots of sports without any issue.


I live in Portland, OR and would like to find out about the best hospitals/heart surgeons in this area.
Also, is there any BAV group/association in my hometown?

Thank you,
Clement
 
cpl said:
Hello all,

I am 41 years old, and was diagnosed with BAV / regurgitation last month.

To summarize, I have always had a murmur and the BAV was eventually detected with an echocardiogram.
I have had no apparent symptoms so far and have done lots of sports without any issue.


I live in Portland, OR and would like to find out about the best hospitals/heart surgeons in this area.
Also, is there any BAV group/association in my hometown?

Thank you,
Clement
Click to expand...

Clement,
We have several members who live in Oregon. Marguerite53 is one and pnwcoast is another. George lives in Washington, and I will confess ignorance concerning his proximity to where you are!;):p
There is a website you might want to look at to determine if there is a group in your area for BAV. www.bicuspidfoundation.com
I was born with a BAV. One of our sons has a bav, and is being followed, and our grandson also has the bicuspid aortic valve. How severe is your regurgitation? I suffered from aortic stenosis, but I was unaware I had a malfunctioning valve until a murmur was heard at a routine physical ten years ago.
I'm glad you joined the group and I hope you get the answers you're searching for.:)
 
Thanks for the head's up, Mary!

Good morning, Clement. Welcome to our wonderful community, here!!

I am in South Metro area and had my surgery at Good Sam in downtown Portland. We have an abundance of good surgeons and hospitals here, really! My guess is that Providence on the east side, and Good Sam on the West are the best. If you like your cardio, he/she would be able to refer you to an excellent surgeon.

I don't know of any support group locally. I was referred to a general heart surgery group and it was always too full. Didn't matter. I had found VR.com and never looked back!! So much support here!

Feel free to PM (private message, up at the top right in the blue box, here) me for more details.

Best wishes.

Marguerite
 
Hi Clement,
I live just down the road aways near St. Helens, Or. Howdy neighbor!
I had a mitral valve repair on July 29th, 2004. My cardio and my surgeon have both retired. Too bad, they were great.
I've seen where Good Sam in Portland has been rated in the top 100 cardiac hospitals in a survey of some sort, I can't find it now, and I know my unlce was very happy with his mitral replacement and CAB at St. Vincent hospital, also in Portland.
With a BAV I would be sure and have the condition looked at by the best you can find.
My own experience is that you need to ask around the different cardio's offices for their opinions and options.
Best of luck in your search. Find a cardio that you like and can trust, if picking and choosing is an option for you, that's the first step I think.
And welcome, glad you found this site, it's great.
 
Dear forum members,

Thank you for the responses.

My BAV was diagnosed at Providence.
No idea about the regurgitation severity, except that I should come back for a visit in 6 months.

Concerning any support group, just got an email about an OSHU program called GenTac. I will do some research.

Since I am the main source of income in my family, I would like to find out how long I should plan to be out of work after surgery, and how much savings to plan for all costs after insurance reimbursement.

Best regards,
Clement
 
Hi cpl,
I think everybody is different as far as healing. I was off work for 3 months because I work in an industrial plant climbing stairs, ladders, lifting and so on.
I had sickness and accident insurance to help pay the bills. I also saved another 5k to use durring my time off work because I was not sure just how long I would be off work. I didn't want to have to worry about money while I was healing and getting my strenght back.
If I remember, I had somewhere around 5k in hospital bills and Dr. bills to pay after my medical insurance paid their portion. Hope this helps.
 
I think six weeks off work is the norm, but others have returned to work sooner according to their situation.
I had double insurance coverage so my out of pocket was about $160. If you're the only one with insurance coverage, it will depend upon whether you have it performed in network or out and how much your deductible is.
 
So it seems 6 weeks off + $5K minimum.

The strange thing after being detected with BAV is that I keep thinking about it all the time, mostly if I do sports and my heart rate increases.

I do not know anymore if my "out-of-breath" is normal due to physical activity or plain bav symptoms.

I do not want to go running anymore fearing that it could have negative consequences.

Clement
 
I would not stop my normal activity unless my cardio recomened I change something. That said, I know how difficult it is to have to except the reality of being told you have a heart problem.
Just take it easy, consult your cardio for lifestyle advice, get comfortable with a troubled ticker. It took me several years to come to grips with being told I had a bad heart. Took me several more years before I could admit to mself that I really will have to have a heart operation. Luckily I had the opportunity to wait, some arn't as fortunate. In the end I asked my cardio if there was ANY other way to fix it besides surgery. Of course he told me again the facts of my situation and what was required to fix it. He was so patient with me, I really liked that cardio.
Take it easy, learn all you can. You are your own best advocate.
 
Clement, I would recommend that you become friendly with the nurses at your cardiologists office. Call them, leave the message (do the dance) and they will call you back and give you advice, answers. Of course, we are wonderful here with our opinions and answers, but we have no idea where you stand medically.

The best thing you can do with this 6 months (before your next check-up) is take a very very very deep breath, understand that these surgeries are really very routine and survivable with excellent outcomes. And then dig in to all the information you can get your hands on. Let us help you decipher some of it. You have a lot to learn, and it sounds like-- plenty of time.

My father had triple by-pass at Providence with Dr. Andy Tsen back in 1998. He is amazing!!!!!! I went to him for a second opinion and the only reason I didn't use him, quite frankly, was that Good Sam is in a much more fun part of town, and I knew we were going to wreck my college daughter's spring break by making her be home to hang out with my husband and I wanted them to have some fun while they were waiting around so much. Also, my cardio (Dr. Sandra Lewis) worked out of Good Sam and so I went with her recommendation. My surgeon was Dr. Mark Metzdorff. Another wonderful man!!! I don't think you can go wrong with Providence. I think it actually may be ranked highest in town.

Each time you have a new kind of question, here, start a new thread. That way more of us (and there are so many!!) will see the title and respond.

Marguerite
 
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