Anecdotal Observances

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I can't tell you how terrified I am about this operation, much less a later reoperation. Nonetheless, I want to go the tissue route.

My thoughts:
- Many times people have to have a reoperation anyway, because something else happens, including degradation of the tissue holding the valve, a leak, or calcification/damage to other valves. Not to mention recalls.
- Any other medical problem that arises is complicated by anticoagulation therapy, sometimes gravely, and randomly there are medical people who are not competent to deal with the issues that can arise. And they probably don't know it.
- If I have to constantly check what I eat, my INR, worry about taking my pill or leaving them behind, I will never feel free of it. I will obsess about my heart condition internally, as my thoughts will keep being brought back to it. I need it behind me to live.
- Maybe I get 13 years, or 15. Maybe I get 20. Right now, I probably have less than one. It's all a gift, if I make it through this. And most reoperations really are successful, should I make it to then.
- In 10 years, they may actually have a working, permanent, walk-away fix. Right now, I can't wait for it - and I really wanted to. Next time may be the last I have to go through.
- I dislike doctors, except my GP (and hopefully the surgeon I find). I want to get the heck away from them as long and as often as I can. I don't enjoy being patronized by rubber-stamp medical personnel with xeroxes of shoulds and proper behaviors, and I hate medical tests.
- I am not organized and neat, and I relish the chaos of life. Flossing is as good as ritual behaviors get with me. Constancy is a requirement of Mistress Coumadin.
- I want to be in the deep woods or fossil-hunting on a winding mountain road, and not have to worry how close a hospital might be, or how long it would take to get there over those endlessly twisting miles, if I got clumsy with my rockhammer or chisel. (And I have been known to be clumsy.)
- Apart from my family and my dog, I don't want anything to own me. The more I consider the graveness of this next step, the more forcefully I realize the importance of that to me. Work takes too much already, but that can't be helped.

Wise thinking? Foolish raving? Depends on how it works out, doesn't it? I just want whatever's left to be as good as it can be.

Who knows? My karma may be that the surgeon suddenly changes his mind about what's best during the surgery, and installs a mechanical valve while I'm trapped in silence.

What this thread does is help people consolidate their thoughts, expose themselves to others' notions, and give them an opportunity to consider their options in a common venue. It's a thread similar to ones I read four years ago on Hank's somewhat humbler home page, and to ones that will be here two years from now, and five years from now. It all seems like confusion and indecision, yet somehow, it helps not to be completely alone.

Be well, sleep soundly, and dream of puppy dogs and laughing children.
 
I think you've found your answer. One can research, question, weigh and balance all the alternatives for valve choices. Ultimately, we find peace by embracing the decision we've made (or by necessity, the one made for us) and in so doing, it becomes the right one.
I think things will go well for one so passionate about his life.
Good luck,

Sue
 
Dear Dale,
Your fabulous post regarding the pros and cons of each valve was truly amazing. I have been reading many posts at this site since finding it a few days ago. I have thought about replying to posts many times, but for some reason I did not, until now. I am scheduled for the Ross on 3/3, and am having a very difficult time choosing the "back-up" plan if the pulmonary valve isn't perfect. I am active and have a 5 year old son. The past month has been so difficult as we realized that the surgery was iminent, and a decicion had to be made. I have known all my life that surgery was a strong possibility, but had hoped it would be a few years off. Unfortunately, things have worsened quite a bit. Reading the posts here from so many people going through the same fears and decisions has been enormously helpful. I haven't slept well in weeks, and the surgery, and my family is all I can think about. I wish you all the best on your surgery next week. I will keep you in my prayers.

Candy
 
Hi Candy

Glad you came out of lurking mode and decided to join in. You will not find a greater group of people to help you and stand by you. It sounds like you've been doing your home work, so I'll leave this be as a welcome, but should you have more questions that are taxing your soul, please ask. There is no need to feel alone when going through this stuff. ;)
 
Hi Candy and welcome!

I'm on deck for surgery "in the near future" and I'm planning on having the Ross Procedure as well if my surgeon decides I'm a good candidate. I thought making a decision on a valve was going to be the most difficult part, but it turns out getting my information sent to my surgeon the hardest part so far. As for my back up plan, as of right now I've picked the C-E pericardial bovine as my 2nd choice. I will take my surgeons suggestion into consideration as well if I ever get to meet him. :D

I'm glad you posted. I have found this forum to be a wealth of knowledge and filled with compassionate people willing to help or just let you blow off steam. I've been blowing off more than my share of steam lately...lol!
 
Hi Ross! Hi Bryan!
I was so excited to bet a reply. Sounds kinda silly, I know. I am relieved to have all my decisions made and a date for surgery. But I can't seem to ever turn my brain off. I am very scared, mainly because I have a 5 year old son who is used to having mommy at his disposal 24/7. He knows about the surgery, as much as he can understand. We are open about it with him. But everytime I look at him, it takes all the strength I have not to break down sobbing. I have a lot of friends who are lobbying around us to be sure "things" are taken care of for me, but planning all htat is tiresome, too. thank you for listening.

Candy
 
I've got a date.

They're doing the cardiac catheterization on April 5th, and the AVR on the 6th. Both will be done at Robert Wood Johnson in New Brunswick. Dr. Tyrone Krause will do the honors with the AVR. He says the operation takes about an hour and a quarter.

Guess I'll go with the Mosaic, which the surgeon prefers, rather than the CE bovine, which I still think should last longer. If it lasts less time, then I'll be younger for the reoperation, which will give me better odds then. If it lasts as long as they hope (or hype), I get to go to my granddaughter's high school graduation before I go through it again.

Either way, I believe the quality of the time will be greater with the tissue valve. While the Coumadin replacement is coming, it will probably cost much more than Coumadin, and it will likely be a long battle to get insurance companies to cough up for it. They're apt to say that Coumadin does the same job much cheaper, and not add the new drug to their formularies. Look how long it's taken to get home testing approved. As well, there is the long-term testing in a large population that will only happen when it gets into general use.

I also believe the lower annual risk potential makes the long-term survival odds better with tissue, despite the likely later explant. I theoretically take the brunt of my odds all at the time of the reoperation, not annually. The worry factor is much lower when something else goes wrong, as well. I don't have to fear that a local emergency room doctor may underestimate the reactivity of a blood thinner, or that it will complicate an otherwise minor health situation.

It took so long to get a surgeon and get it all arranged, and now the date is just steaming right up on me. When my mind wanders, I get that cold grip of fear on my stomach. I've done all the homework and choice-making I can do. Now it's in other people's hands until I wake up post-op.

Bob H
 
Bob,
Well you've successfully cleared the first hurdle with the what, where, who and when of your surgery. I was pretty apprehensive about my surgery until I got the date. From that moment on I was pretty relaxed and just focused on getting all the necessary preps done. My husband kidded me that I was the only person he knew who rehearsed being a shut-in but getting all my gear together and ready was calming and I had everything I needed for the hospital and my return home. Keep connected with us here. If you get the willies before the big day we're always ready to listen, answer concerns and just support you in general.
My best,

Sue
 
some thing in common

some thing in common

Kenny F

I had my valve surgery exactly 1 month after yours on 12/17/03. It was my second sternotomy. My first surgery was for 5 coronary bypasses in 1993. They missed my bi-cuspid valve then. I chose a homograft since I wanted to run and continue my very active life style.

I totally agree with you that it does not take a year to recover from open heart surgery. I am 60 years old and currently run 3 days a week. I am training for the Air Force Marathon. I also weight lift 3 days a week. At 3 months post op I can do 20 pushups with no chest discomfort and have no activity restrictions. The only meds I take are 81mg aspirin and 20mg Zocor along with a handfull of vitamins and minerals. My cardiologist ran me to exhaustion with a cardiolite stress test a month ago. My wife was concerned about me running. After the test he told her"if John goes down running, it won't be from his heart."

I believe that my rapid recovery was due to my exercise on a daily basis starting at 2 weeks post op. I started gradually and added intensity and duration to my workouts as I was on the mend. I stayed below 10 Lbs with the upper body for 8 weeks to give the sternum a chance to heal.

The recovery from my second surgery at age 60 was faster than the recovery from my first surgery at age 50.

John B
 

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