Pro active fast track

[ken taylor]

O K FOLKS IM still in Texas . After one week to sort all this out Ive decided to follow my gut feelings and just get this behind me. The cardiologist wants to see me every three months and says he thinks I can go another year maybe two, the surgeon say 1 year .I have decided not to waite, Why waite for damage to show up . Especialy because I live 6 hours from serious medical hospitals in western Panama. And with symptons showing up in Panama is not a good option for me . My aortic valve area is 1.0cm2. and the ascending aorta diameter is 4.1 so It will never get any better so now im strong in good shape from walking 12 miles a day so I want it done. As far as my wife .I called the Senator John Cornyn office and sent all my medical docs. and there looking into helping me get my wife here. I will post my surgery date as soon as I know . God Bless All Ken

 

[ken taylor]

OH YA my cathis tuesday morning in Houston Ken

 

[Danny]

Good luck with everything Ken, keep us posted.

 

[Kathy McCain]

Hi Ken,

Great attitude! As scared as I was, I said let's just get this thing going! I wanted it behind me. No, there is no sense waiting, and putting off the inivitable.

 

[Lynlw]

Sounds like the best idea. Every 3 months getting a check up in Texas and having to travel that far, seems alike alot of traveling and time, to what buy an extra year before surgery? and as you said what happens IF you do have a problem while you are home. I think you are making the wisest choice. I hope you are successful in getting your wife to be by your side.

 

[netmiff]

Sounds like a good plan - you're there, you may as well get it all out the way, done and over with, then you can go home with nothing to worry about.

Hope that your wife gets to join you soon, it must be as hard on her as it is on you at the moment.

 

[Lisa in Katy]

Sounds like a good plan. I live near Houston and work near the Galleria (about 5 miles from the Med Ctr and can see it from my office), so if you need something, let me know.

 

[ALCapshaw2]

I'm glad that you took the time to 'sort out your priorities'
and make a Truly Informed Decision Ken.

It DOES take a "Leap of Faith", but given your circumstances,
I think you made a WISE Choice to 'nip it in the bud'
and go back to pursuing your dreams
and living in paradise.

Many of our members report finding a 'Sense of Calm' or
Peace once they make their decision to proceed.

It sounds like you have arrived.

Best Wishes y Buena Suerte Amigo !

'AL C'

 

[TXWildflower]

Must be quite a relief to have made a decision! Waiting is hard. I hope you can get your wife there too!

Rhena

 

[ken taylor]

Thanks Folks- Question -Why does the cardiologist want to scare the heck out of you and try to talk you into waiteing until you hit the floor? I do not understand this. The only positive thing he could tell me that I could have another year of life. Incase something went wrong, Especialy because the risk go up for me because this is the second time into my heart and there is scare tissue to deal with. Is it about $ please tell me why they like to waite . Ken

 

[escargome]

Ken,
I wish I had a good answer to your question. I didn't encounter a let's wait and see attitude from my cardio, but then I was in real trouble by the time he saw me. I just wanted to say that I think you have taken the best route for yourself. I will pray that the legalities come into a positive position regarding your wife. I shall keep you both in my thoughts and prayers.

 

[briansmom]

I think cardiologists over estimate the dangers of the surgery and underestimate the dangers to your heart and emotions. I don't think they always look at the big picture/whole person. I don't think it's about the $, I think they will make more money with the surgery than without.

 

[tobagotwo]

Well, you know you've got my vote. My original cardio wasn't even considering a surgical option. Then, when the interventional cardio did my cath on Monday, he advised against the surgery set for Tuesday. The surgeon stuck by me, although it put him out on a limb a bit. Results of the surgery were that the valve was in extremely bad shape, and absolutely needed to come out. All that would have happened from waiting would have been further collateral damage to my heart.

By the way, it was my second surgery, too. If you've had it before, you know what you're up against. You're already more informed about the surgery than your cardiologist.

Again, nothing else in your heart can improve until the basic problems are corrected. There is no prescription or monitoring that can fix or even slow the progression of your valve problem. As far as surgical chances, the better condition you're in to start with, the more successful the outcome is likely to be.

Cardiologists are almost always negative on surgery. They somehow seem to think that, 1) it means they failed to "manage" your heart issues and that, 2) a 2% chance of something going wrong is somehow better next Thursday than this Tuesday, and that, 3) if something goes wrong in the surgery someone will somehow blame them for it.

Most cardiologists are dealing with many upper 70s to mid-80s patients, and they tend to just manage their heart issues until the patient dies of something else. However, when you're younger, you actually want the problems fixed, so you can hopefully enjoy the rest of your life. I fully believe my original cardiologist would have kept "monitoring" my heart until it was desperately weak, then would have said something like, "Well, I'd refer you to a surgeon for a valve replacement, but I'm afraid your heart might not be strong enough for the surgery."

Frankly, trying scare tactics about surgery on a patient who will obviously have to have the surgery later anyway is cowardly. And how handy, should something go wrong, to later be able to say, "I tried to talk him out of it."

You may wind up needing to wait until either your valve is less than 1 cm² or your aneurysm is greater than 5cm. Those are general guidelines in the US for surgery. But it looks like you are very close to that anyway.

I wish you good fortune with moving ahead, and success with your surgery.

Best wishes,

 

[Lynlw]

Thanks Folks- Question -Why does the cardiologist want to scare the heck out of you and try to talk you into waiteing until you hit the floor? I do not understand this. The only positive thing he could tell me that I could have another year of life. Incase something went wrong, Especialy because the risk go up for me because this is the second time into my heart and there is scare tissue to deal with. Is it about $ please tell me why they like to waite . Ken

I don't understand it, especially since this "extra" year of life would involve the stress of worrying as well as running back and forth to Texas every 3 months for testing wonderring if THIS is the month I stay and have surgery.
the OLD (outdated) stats for REDOS were much worse than they are these days. The GOOD surgeons have alot more experiences operating on multiple REDOS (especially in the past 20 years since many of the children with complex CHDS have to have 2-3 stage surgeries before they are in kindergarden) so they have know what problems that brings and the safest way to take care of them.
One of the reasons some centers like Cleveland are using tissue valves in younger people is because of the fact the stats are getting so good for REDOS. Its certainly not a walk in the park, but it isn't as high risk as some cardiologist act.

 

[hensylee]

GO FOR IT, KEN! You have examined it all and have made your educated decision with help from many who have been there, too. I do hope that your wife will be able to be with you as you go through all of this. Wishing you the very best as you venture on. Blessins.....

 

[Jkm7]

You seem to have a good grasp and have reached a good decision.
Sending you very best wishes for a successful surgery and great recovery. HOpefully you will be able to have your wife there with you.

Please keep us updated.