Coming in From the Shadows

[Central Jersey Steve]

I have been lurking on this site since 2000. I think I made 2 or 3 posts back then. In fact my story is on "Stories", pending Surgery, Steve Wilensky.

I had a coarctation of the Aorta repair in April 1963. As the years have passed, my condition has progressed to the point where I have mild to moderate aortic and mitral valve insufficiency, as well as an ascending aortic root dilation.

In 2000, I was told that I would need surgery to have an avr, a mitral valve repair (hopefully) as well as the aortic root replaced. I sought a bunch of 2nd opinions from the Cleveland Clinic, NYU-Cornell, and NYC Columbia Presbyterian. The majority call was that I was not in immediate need for the surgery and could wait it out. My surgery, which was scheduled at Columbia, was actually cancelled (one week before it's date) by my assigned cardiologist there at Columbia who felt that I did not need it yet. So far, he's been right, as I am alive, feeling good, and under his care.

However, there are now subtle indications (test results) that point that I may be ready in the next year or two. As w/every other member of this site, the prospect has me scared out of my mind, but what choice do we all have when it comes to this.

I wanted to introduce myself, and say hi. As has been written many times, this site is invaluable! I look forward to the support, comfort, and encouragement that it will provide to me as I move uncertainly ahead.

 

[epstns]

Another Steve!

Another Steve!

Hello, Steve,

I'm another Steve, and I've been kind of the informal host here in The Waiting Room for the past couple of years. I, too, have been aware that valve replacement was in my future for some time. I, too, have seen of late that my echo readings are sliding toward the point at which my cardio will refer me to a surgeon. At the present time we "think" we're still 2 to 4 years out, but who can tell? As they say, "The worse these things get, the faster they get worse."

In the meantime, I would advise you to make yourself comfortable here in The Waiting Room and read all you can about your situation and the surgeries and experiences of "the family." Ask all the questions you want, and be as specific as you feel comfortable with -- we are all dealing with the same things and we're remarkably open about how it feels and how it affects us.

My own valve situation is different than yours -- I have moderate to severe aortic stenosis. I'm pretty much asymptomatic, but we have seen some further deterioration of the echo measurements, so we think the condition may now be entering another phase in which it will deteriorate further. So, we watch and wait.

I hope you have a cardio with whom you're very comfortable. That makes a world of difference when you can ask questions and speak openly with the doc. The other support comes from the family here.

Welcome, and we hope you stay "visible" this time.

 

[Ross]

As w/every other member of this site, the prospect has me scared out of my mind, but what choice do we all have when it comes to this.

You have exactly two!
1. Do nothing and die
2. Roll the dice and move your mice.

 

[bvdr]

Hi Steve,

Welcome to this site (again) and I'm glad you are making yourself known. I had MVR in '03 and may have another valve surgery sometime in the future for aortic stenosis. It is just, hopefully, far enough in the future that I am not mentally back in the waiting room yet. I'm not looking forward to that since, as you know, waiting is the most stressful time.

It sounds like you have stayed on top of your heart condition and will get the needed intervention at the right time.

 

[Central Jersey Steve]

Steve and bvdr,

I plan on staying visible from this point on. I am going to need the support from everyone here to help me through what the future will bring.

Ross,

I am most definitely going to roll the dice and move my mice! What I meant by what choice do we have, I meant that "do nothing & die" was not an option. I hope for many more years on this earth to annoy my wife and sons. I told my wife if she wants my life insurance, she going to have to kill me herself. She thought for a minute and asked me if she could get back to me on that!

 

[Ross]

You ought not tempt her! She Beasts can be terrible terrible things at times.

 

[Randy & Robyn]

You have exactly two!
1. Do nothing and die
2. Roll the dice and move your mice.

When I get depressed about my condition, I think about the fact that fifty years ago we wouldn't have had that second choice that Ross is pointing out. Our diagnosis would have been a death sentence.

Modern medicine has given all of us a very good shot at living out a normal life.

Randy

 

[Marguerite53]

Hello!

Hello!

Welcome to the forum. Glad you've decided to come in from the dark. This is an ever-expanding waiting room and those of us who've been here awhile are sure glad to have new faces!! It's always easier to bear the wait when you have company!

As for She Beasts, Ross, careful now, you may unleash afew here on this website!!!!!

Marguerite

 

[inlaguna]

Steve,

Looks like you have a few of the problems I have had since childhood ( coarc repair etc.....) . I am on the other side of my AVR and things have been great. Lots of energy and a new appreciation for what life has to offer.

I had the anxiety and fear that all experience, but recognized there was only one choice. Once I made that choice to move forward I was at peace with all outcomes; but, somehow I knew that I would be around to watch my daughter grow up.


Dan

 

[gadgetman]

Steve,

Welcome aboard. Although my stay in the "waiting room" was extremely short I received much comfort from this site and our "family". You will receive much information and recommendations from people who have already made the walk.

Our prayers and good thoughts are coming your way in your "wait" and surgery. Keep us posted and don't become a stranger.

Ross,

My favorite piece was the "car" and PLEASE, PLEASE, don't start the "SHE BEAST" thread again. I had to bite my tongue and stay out of the last one.

May God Bless,

Danny

 

[Debrinha GT]

Give it a try

Give it a try

Hi there Steve, I'm Débora from Brazil and when I found out that I would need to have my mitral valve replaced for the fourth time, I decided that I had to do something about it so that I wouldn't go nuts.You see, I had rheumatic fever at the age of seven, had my first surgery at ten and it's not over yet. I then found VR which was a blessing! At first I thought I'd go into depression, but as time went by and I got over the shock, I realized that there was nothing I could do about it and it would be up to me what my life would be like from then on. I started researching a lot and made sure my doctors would answer all my questions. Last October, I went to have a word with my surgeon who told me that I should only need the operation in a couple of years. Although I'm well aware that sooner or later my time will come, I've chosen to live my life as normally as possible and I mean it. Being a VR member gets you prepared for it, I think. So, what I think you too should do, is live life to the fullest instead of suffering in advance. When you can't beat your enemy, join him! If you just keep thinking about it all the time in a negative way, you will only make matters worse because it has been proved that your emotional state can have a negative effect on your body thus making your immune system weak and so on. Take care and keep us posted. Feel free to post here at any time and vent whenever you feel the need to. Take care.
Débora

 

[hensylee]

'bout time you got here, Steve. We've been waitin for you. Welcome to VR. Great members here who can help you from here to there. Glad to have you here.

Ross - remember what happened to those Indians. Be careful.

 

[dawnwit15]

Hi Steve

Hi Steve

Welcome, local jersey neighbor. I'm right down the road from you in Howell. I too was under the care of an amazing cardiac surgeon at Columbia Pres. in NYC. Dr. Mehmet Oz is his name and I have not had any problems since my surgery. When it is your time for surgery, I can assure you that you are in good hands at Columbia. Keep in touch. Who knows, maybe we'll bump into eachother at the grocery store!
Dawn

 

[Central Jersey Steve]

Hi Dawn,

When I was scheduled for the surgery in 2001, the surgeons I researched were Dr. Oz, Dr. Rose, and Dr. Smith (the surgeon who recently did Pres. Clinton's bypass).

I chose Dr. Rose. It really was a toss up between any of the 3.

I see my cardio there every 6 months. His name is Dr. Sherman. In fact. I just saw him last week for a check-up. He is really good. He seems to be in no hurry to have me in surgery. When I do, it will be an avr, mvr, and an aortic root replacement.

How did you find the experience? Was it really hard? How was the breathing tube (something that particularly terrifies me).

Who knows, we may run into one another at the grocery store! Where do you shop? (lol).

Steve

 

[geebee]

Hi Steve,

I am an ex-Jersey girl who had my first 2 surgeries in NY (St. Luke's & Long Island Jewish). So many good choices in your area.

There are so many good responses on this thread that I just wanted to pop in and offer you my best wishes.

 

[Nancy]

LURKING SINCE 2000???

Wow, didn't think we were that scary. I did read your story a while ago and there are others there who I haven't seen posting, and I wondered where you guys were.

So now you've got to make up for lost time. So keep on posting. You already know we'll help you out when needed.

Hope to be seeing more of you.

 

[dawnwit15]

Steve:
I too was horrified at the thought of the breathing tube. There are several threads on this site dedicated to that issue. A few great people here gave me some wonderful advice to breath with the tube not against it. That advice is what got me through the experience without any difficulty whatsoever. Just remain calm. Half the time the tube is in, you'll be in and out of conciousness anyway. Mine was in for a few hours and to be honest, it felt like 10 minutes. Once they see that you are breathing on your own, they will remove it A.S.A.P. So no worries my friend! I think a few people may agree with me that the worst part of this surgery is the anticipation leading up to it. NY Pres. will take great care of you and you are dealing with one of the best cardiologist so rest assured your in good hands. Their ICU unit is wonderful, one nurse to one patient ratio. So you will be her #1 priority while you are in that unit. The step down unit is your next step, not as good as the ICU, one nurse to 6 patient ratio. But they only put you in the step down unit if your doing well so I guess it's a good thing. I was home in 4 days. Can you believe that? You will do just fine. Stay positive and have faith. You are in my prayers.
By the way, the new Stop N Shop is my favorite grocery store (lol)
Take care,
Dawn

 

[gadgetman]

I Don't Need No Stinking Breathing Tube!!!!!

I Don't Need No Stinking Breathing Tube!!!!!

That was one of many fears I faced going in. Along with the drain tubes, IVs, Swann Device, cuts on the leg and chest, and PAIN, PAIN, PAIN. But with God's help (and a lot of strong meds) I didn't remember too much about my two day recovery time. I remember a nurse (or Angel) leaning over me right after returning to ICU and wispering "My name is Jennifer and I'm going to help you through this--just sleep and rest". The next thing I remember is her leaning over me and wispering "lets get that nasty old tube out--just relax and it will be over quickly". It was. Heard a little gurgling noise but felt nothing. Each time they would remove a tube or something else I would tense up and say "this is the one" but before I could finish the thought it was over. Any my wife will tell you I don't "do" pain very well. Your faith will get you through this, along with all your "family" here at VR.com. We'll send prayers and good thoughts your way for you and your family.

May God Bless,

Danny

 

[ARossGuy]

Ex NJite

Ex NJite

Hello NJers,
Noticed some of you guys are or were from NJ! I moved out to Texas two years ago from Toms River (I was raised in East Brunswick). Anyway, we like the weather down here better, but sure do miss the seashore!
Regards,
Doug

 

[gordy]

Breathing tube

Breathing tube

My biggest fear of the surgery was waking up with the breathing tube. When I had my TEE, I woke up from the versed and demerol sedation; thought I couldn't breathe, and tried to pull the tube out of my throat. In my surgery, I don't remember the tube at all. The ICU nurses said I was a model patient; followed all their instructions, and waited for them to remove the tube. I don't remember any of this. I think most people are still heavily sedated while the tube is in, and the ICU team tries to remove it as soon as it can safely be taken out.