We always knew it was coming. . .

[epstns]

Well, after more than 8 years of dealing with aortic stenosis, and with the last couple of those becoming more and more difficult, my cardio and I have agreed that it is finally time to start planning for surgery. Echo results are stable and within acceptable ranges, so we don't believe that any damage has been done yet. Also, for all this time I have thankfully been without any of the "cardinal" symptoms (syncope, angina, SOB, dizziness, etc.) but I have kept an exercise "diary" and it has become apparent that my exercise tolerance is decreasing now at a faster rate than before. As the adage goes, "The worse a valve gets, the faster it gets worse." So, we have targeted early next March for surgery.

That said, a couple of things come to mind (I'm sure more things will come up as time goes on).

First, as I live in Chicago and (so far) have noted no complications that would take me to Cleveland Clinic or Mayo, my cardio and I are considering two local hospitals and a few local surgeons. Does anyone have any experience or advice on any of these?

1. Northwestern Hospital - Dr. Patrick McCarthy
My cardio isn't sure if Dr. McCarthy actually does aortic valves himself or if he refers these to associates, as cardio seems to think that Dr. McCarthy specializes in mitral valves.

2. Loyola Medical Center - Dr. Mamdouh Bakhos
Dr. Bakhos is a professor at the med school and is the one my cardio says he would send his parents to (but I forgot to ask cardio what sort of relationship he has with his parents :angel: )

3. Loyola Medical Center - Dr. Jeffrey Swhwartz

Cardio says he trained with Drs. Bakhos and Schwartz, and holds them both in the highest regard.

I plan to hold any decision regarding valve choice until I meet with the surgeons. I'm leaning toward tissue to try to avoid the need for long-term anti-coagulation, but will consider all with input from surgeons.

The other item that comes to mind is that I will have to ask all of you to find another manager for The Waiting Room. I thought I should mention it now so that we have some time to carefully select someone to keep the place in shape.

I also want to thank my entire family here at valvereplacement.org for all the years of unfailing support. Without you, I couldn't have gotten to where I am now. I'm sure I'll need to rely on all of you even more as I move ever closer to the mountain.

 

[Superbob]

Goodness, Steve. You have been the waiting room personified the whole time I've been a member here. You have offered valuable guidance and good humor to those who are waiting also (as well as to those who have had their surgery). Guess it seems almost a shock now to have a target date, or at least a month, in sight. I just wanted to send all my best wishes as you settle on a definite date and make all the preparations. I'm sure others will come along who can offer insight on surgeons in your area. My very best wishes go to you, and you know we will be here for you.

 

[ALCapshaw2]

Steve -

If you want to know if Dr. McCarthy does Aortic Valve Surgery, JUST CALL HIS OFFICE and ASK.

Dr. McCarthy is Ross' Hero. He saved Ross' life.

'AL Capshaw'

 

[epstns]

Al - That's just what I plan to do. . . as soon as I can get a few minutes to spend on the phone. Still at work, busy as a one-armed paper-hanger.

 

[Marcia58]

Steve,

What does your cardio think of Dr Valluvan Jeevanadam, Chief of Cardio-Thoracic Surgery at University of Chicago? I can't speak to aortic valves, but he did an excellent job on my mitral repair.

 

[Jkm7]

Steve,
Sorry to hear you are at the point of picking surgeons. Hoped maybe you'd be one who stayed stable.
Best wishes.

 

[njean]

Well Steve, it's gonna be lonely here in the waiting room without you. But if your time for surgery has come, then onward you go.

I hope that you pick the best surgeon to do the job and are at peace with your decision on what kind of valve to choose.

Just my 2 cents worth: I've never regretted getting mechanical nor being on coumadin for 30+ years. That said however, your choice is a personal one & if you are good with it, then go with that & don't look back.

Will keep you in my prayers!

 

[Duffey]

Gee, Steve, I'm dumbfounded. :eek2: I thought you'd get another year or two in before replacement, but as you said, aortic stenosis picks up its pace once it reaches a certain point, and apparently you're at that point.

I can't help you with choice of a surgeon. You've got several good ones to chose from. Don't forget the surgical team and the hospital also play an integral part in the surgeon's success, so you might investigate those also.

It's smart to consult with the surgeons regarding valve choice. For me, the best thing about having a bovine replacement is that I'm rarely reminded that I've had avr. Check-ups and echos sure, but on a day to day basis, there's little, if anything, to remind me of the surgery. But that's only my experience and each and everyone of us has their own personal considerations to take into account.

I wonder if Hank might put a want ad up for Waiting Room manager? There are many promising candidates, but it will be hard to find someone with the staying power that you've demonstrated.:wink2:

In the meantime, like the song says, don't worry, be happy.
We've got your back.:smile2:

 

[RunMartin]

Steve,
I was in the waiting room on VR.com for 6 1/2 years (22 year wait in total). I had my surgery 9 months ago as my heart started to struggle with my exercise. Being around here for a while meant there were no surprises or panics when the AVR appeared on the horizon. You will do fine, especially being fit. Best wishes and a speedy recovery.

Martin

 

[DebbyA]

Steve,

I can't believe it! And yet I can. You will surely be one of the best prepared ever. Just want to wish you well--this is about the time of year I got the "it's time" message.

Debby

 

[Lynlw]

Wow, I don't know why since you have been in the waiting room since before I joined 5 years ago, I was surprised to see this. I guess you just seemed to be the perfect waiting room host, I expected you to always greet the others who find their way there. But beside learning so much and being well prepared as you are asking your questions to the different doctors and getting ready for surgery, just imagine ALL the people you've helped over the years and how many people will now have YOU in our prayers. I hope you can feel all the good thoughts being sent your way.

 

[mainframe]

Steve, sorry you can't stay in the waiting room for longer, I guess we all know our turn in the batters box comes sooner or later. At least you have plenty of time to prepare and haven't done any damage to your heart. I'm sure whichever surgeon you choose will be a good one and you'll be on the other side before you know it.

 

[nngbwh]

Wow 8 years in the waiting room and the time has come. You will be fine.

 

[Kathy McCain]

Hi Steve,

Yes it was just about this time for me too, when we scheduled surgery. I had mine in Feb.

Steve I've been reading your posts for quiet awhile now. You certainly have empowered yourself. Partly with all the knowledge you have gained, being a member of this wonderful support group. I believe you are as prepared as anyone could possibly be. I know you will do just fine. Your heart is still functioning normally, even though you are just noticing some symptoms. You are in good overall health. You will choose the best valve and surgeon, for YOU.

The time is right. Go for it! The waiting will be over and you will have it all behind you, before you know it!

Good luck and keep us updated when you can.

 

[drivetopless]

Hey, Steve!
I'm going to be leaving the waiting room after 13 years (tho not all of those years were spent on this forum) next year, too. I"m hoping to schedule mine for January. Like you, the exercise tolerance is getting noticably worse. I used to be able to take long daily walks and feel my self getting stronger within a week. Now, I just need a nap--no quick cardio improvement obtainable through exercise. And I get breathless after 1 flight of stairs. No syncope at least.

So, I"ll see ya on the other side. Good Luck!

 

[malibu82]

hi there.

i had my aortic valve replacement and aorta repair done by dr. malaisrie and northwestern. he is one of mccarthys associates and i was told he specializes in this. my cardio said if i had a mitral valve problem, no question, i would see mccarthy.

 

[BAVD John]

Steve

McCarthy replaced my aortic valve last July. My replacement was at age 54 and he recommended tissue for me. I would think he would do the same for you. I had a good experience at Northwestern and I would hope you would too. I'd be happy to answer any of your questions about my experience at Northwestern.

John

 

[Nupur]

Wow, Steve! You're gonna leave the waiting room! Given how exhausted I feel all the time, and that uphills cause serious chest discomfort, I may not be far behind myself. All the best with the search for a surgeon.

 

[ottagal]

Hi Steve,
I guess someone else is going to have to take your spot in the waiting room. Thinking of you and knowing that we will be here to get you over to the other side along with the rest of us.
Sounds like you have a good plan and your ducks in a row.

 

[jjay32]

Steve, its been fun hanging out with you in the waiting room. I too have noticed more dificulty in climing stairs and even hiking up any type of incline, So I am going in early (next week) for my yearly echo. Will see what happens. meanwhile will keep the coffee (both regular and decaf) fresh in the waiting room..