Newbie Introduction

[selma]

Hi, everyone. I’m Selma, a 60 year old woman with a life-long mitral valve prolapse. You know, the one that “…lots of people have and it’s perfectly benign and well, maybe SOME day you’ll need surgery but don’t worry, you’re fine.” This past Monday, my cardiologist pleasantly informed me that the abstract “some day” is probably soon since the regurgitation is severe and in his opinion, it’s, better to do it now while I’m healthy and asymptomatic. I’m scheduled for a TEE later in the month which should give us a lot more information. I’m thinking maybe this summer.

Before finding this board, my thoughts, in no particular order: “AAARGH, they’re going to shove a tube down my throat and I’ll wake up gagging and choking and being unable to breathe.” “Maybe I’ll lose weight after the surgery!” “I’m supposed to retire next year and we have all these plans and I’m going to die on the operating table.” “Do I stay here, or do I go to New York?” “Who’s life is this, anyway?” “A heart-lung machine? No way.” “I’m sure glad I quit smoking.”

Then I found this group and I’ve been reading all week. I feel like an oversaturated sponge but I have to say, the information I’ve gained here has gone a long way toward relieving some of my anxiety. Oh, did I mention I have anxiety and panic disorder? (pretty much under control).

Right now I’m in the getting-all-the-information-I-can phase, but it’s great to know you all are out there with answers and support. First of what will probably be many questions: is anyone here from New York State and where did you go for your surgery?

Thanks for listening.

 

[Adrienne]

Hi Selma. I can't help you about finding surgeons in NY State, but as a woman who also had a mitral valve prolapse and regurgitation from way back, and who had an MV repair at 60, I can relate to you. I was very lucky to have been able to have a repair after having had endocarditis over a year before. The breathing tube was not really that bad since I knew what to expect and since I was only awake about 5 minutes and the next thing I knew it was being taken out. Good luck!

 

[Bina]

Selma, welcome !
Stick with us and you will do just fine.
Also, panic and anxiety are almost the norm for many of us. It gets better.

 

[Duffey]

Hi, Selma.

We have several members from NY, and hopefully they will check in soon and give you suggestions for hospitals and surgery. In the meantime, keep reading and asking questions. Someone will have an answer or know where to go to find an answer. And by the way, you sure did the right thing when you quit smoking. Coughing is painful post-op, and smokers seem to do more of it than those who don't.
Best wishes,
Mary

 

[sylviayasgur]

hi selma,
i live in ny and my husband had his ross procedure done in nyc by dr. apul stelzer. there are many surgeons you might want to talk to here in ny. mt. sinai hospital has a state of the art cardiac dept with some of the best surgeons/drs. in fact, dr. stelzer is now there too. columbia presbyterian has a great crew as well. dr. craig smith and his group did pres. clinton's surgery as well as david letterman's.
not sure about the mitral valve. there used to be a wonderful surgeon, dr. colvin, at nyu who did minimally invasive valve relacement/repair surgery (did my dad's), but he passed away recently. keep asking here and i'm sure someone from ny will come forward with more names of surgeons. in the meantime, you might want to look into these hospitals.
hope this helps. please keep us posted,
sylvia

 

[SumoRunner]

No need to go into the big cities any more. This is not experimental, pretty routine now in fact. I had mine done in Albany Med Ctr 20 years ago. My surgeon is still in the area, see link below. If you or a spouse needs to spend a couple days in a hotel, Albany is much cheaper than most.

http://www.amc.edu/PR/PressRelease/01_05_10_D.html

He also spent a lot of time at Ellis Hosp in Schenectady, so their team ought to be well practiced. If I can do what I do for 20+ years, Albany was pretty damn good. (Tomorrow morning I'll be running a 15Km (9.3 miles) road race for the 18th time since OHS.)

I had an appt with the cardiologist this past week. We were talking about the longevity of these things. He said he sees 4 or 5 patients each day over age 90 and even one 100 yrs old. You could easily be among those folks some day.

 

[Greg a]

Hi Selma WELCOME to our family of brothers and sisters in OHS, ask PLENTY of questions its a friendly group ........my first home was destroyed by a tornado in Woodstock Ontario buit that is another story LOL............again WELCOME

 

[DebbyA]

Welcome, Selma, your history sounds a lot like mine, except my MVP turned into a bicuspid aortic valve somewhere along the way! It's good you found this great source of information--it will really help. A lot of us thought we were asymptomatic--til after surgery, then recognized some disappeared discomforts might have been symptoms.

 

[carolinemc]

Well, your search for friends are over, here we are very good at what we do best, being there for you. If I am not here, due to late hours getting to work and back, I can count on the many friends here to do the advice and the friendship hugs for everyone. I heard about this place just a few months before surgery in 2001. I had just lost my mother and was trying to hang in there after finding out it was time for aortic replacement. So this is the place to be, they have the biggest shoulders for one to cry on, share frustations and just have a good time with a good laugh. Keeo coming in, there is always someone here is this house. Hugs for today.

 

[selma]

Oh, what a welcome!! I do feel like I've "come home..." I really appreciate all of you going out of your way to respond. I've told some close friends about what's going on, but I have a feeling their tolerance for my "organ recital" will wear thin. Here, you guys all actually GET it. So, I'll keep reading and listening and once my TEE is done (it's basically the same thing as an endoscopic GI exam, right?) I'll have more info. Thanks again, all.

 

[njean]

Hi Selma,

Welcome to the forum! Glad to hear that you feel more reassured about everything after reading some of our stories! That's what we're here for.....to offer you support, encouragement and knowledge about OHS. It is NOT the end of the world and it's not as scary as it was many years ago when some of us old-timers had our first! Things have come a long way!!!

As for the TEE, don't sweat it. The TEE's I've had, have been a breeze and hopefully yours will be too.

Take care and see you around!