"My Story" (AVR) is now on the home page!

[Susan BAV]

Hello -

Some of you may (or may not, if you have a memory like mine) remember that I didn't realize my pre-op symptoms were actually indicators of bicuspid aortic valve failure until I stumbled across this site last summer and read another woman's story which nearly mirrored my life. That enticed me in to read threads and posts and ask questions. My husband and I had done a lot of research on the subject, but I wasn't absolutely convinced until then, that I really needed to get a second opinion, and soon! Three fine surgeons recommended surgery, contrary to the local (dingbat ) cardiologist I had seen several months before.

That is why I felt it so necessary to submit my story. Reading the symptoms in human terms and not monstrous words that aren't in most people's vocabulary (or dictionary!) made the difference - perhaps a lifesaving difference in my case!

As I write this, the story is in the Mitral Valve Section but I expect it'll be moved to the Aortic Valve Section, where it belongs.

Again, I'd like to thank all the helpful people who posted their experiences and comments which were and are extremely helpful to me and hundreds of others. And especially thanks to Hank for founding this site and Ross for his moderating.

AND, FOR ALL OF YOU WHO HAVEN'T GOTTEN YOUR STORY WRITTEN OUT AND SUBMITTED YET, I HOPE YOU WILL, BECAUSE IT MAY MAKE A DIFFERENCE TO SOMEONE!

With warm appreciation and best wishes, ~Susan

 

[wweir]

Susan,

I was reading your note and noticed that your surgeon was Dr. Manuel Estioko. Manny is a great surgeon and person. When I was preparing for my surgery in Aug of 2002, Manny was the one I went to see at my daughters house, in Santa Monica, where Manny spent over three hours with me going over my condition and what was going to happen during the surgery. What a great person who really cares.

Hope you are doing well

Walter

 

[Susan BAV]

Thanks Walter -

It was great to read what you wrote about (Manny) Dr. Estioko. We felt like we were in very compassionate and competent hands. Absolutely no complaints!

The first time I consulted with Dr. Estioko, he told us that he'd had a pleasant visit with Dr. Cooley the weekend before at a seminar in San Diego. I told him about a signed book on Dr. Cooley's life that my dad had purchased and had that famous Doctor enscribe to me in 1979, when I had my first heart surgery, and the book seemed to interest Dr. Estioko. (My dad was a good one to collect signed first editions.) After the surgery I ordered a first edition of the same book (online from a used book site) and sent it to Dr. Cooley and asked him to enscribe it to Dr. Estioko, which he most pleasantly and agreeably did, and I sent it to Dr. Estioko as a gift of appreciation. I believe it was well-received .

Thank you again for your pleasant comments about the good Doctor. I think everyone who knows him must think he's terrific! And I hope things are going well for you too!

 

[Mary]

Glad to read your story

Glad to read your story

Susan,
I just read your story on the home page and was struck by how similar the symptons you had, mirror the ones I'm having. I just found this site, and have spent most of the day reading everything on it (I teach school and I am on Spring Break; make hay while the sun shines!)
When my husband got in from work, I pulled up many of the posts to show him. He has been a registered cardiopulmonary/respiratory therapist for 26 years, seen many tragic situations in the ICU, and I think, sometimes doesn't recognize the seriousness of a situation until it reaches the critical stage. He was impressed with the body of information on the site, and the personal responses I have received since my first post.
Anyway, to make a long story short, he has agreed that if the cardiologist is still undecided about sending me to a surgeon after my cath procedure, he will take the report to the surgeon himself.
I feel great relief. Your story makes me feel that I am right to pursue my options with the support of family.
Mary

 

[Susan BAV]

Mary -

You sound like the way I felt when I found this site! I was shocked and relieved! I hope you make that hay and spin it into gold! And how terrific for you that your husband is in the medical field!

I replied to another of your posts but let me say again, "Best wishes!"

~Susan