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malibu82

Well-known member
Joined
Jan 5, 2010
Messages
478
Location
Libertyville Illinois
Hi everyone. Thanks for following my story and offering the comments and advice. I realllllllly appreciate you all.

Here is my update:

I had my echo done on Thursday Dec. 23rd at my local cardio's office.

I went back to see my local cardio today to go over the results.

He said the echo is unchanged since October, which is good. He said visually, my valve looks great. He said the leaflets are functioning, there is no leakage, it looks good. He said the reason my valve area and gradients don't seem as great was something he had to research on because he has never seen this before. So he said he made some phone calls and read articles. He found an answer...

He said that with the aorta replacement with the dacron tube, there is no "give" like a natural aorta. It's tight. So that can affect the actual gradient pressures and aortic valve area readings up to 1/3 of what they really are.

He said they gave me a big valve, and patient prosthetic mismatch is something they typically see in older patients so he doesn't think that is a problem. He said it is well seated, nothing seems abnormal. It all LOOKS great.

He said my lightheaded and occasional chest pain isn't being caused by my heart.

I asked him if in this condition I could have another baby, he said he wants me to wait one year and come back. If the echo still hasn't changed, then we will talk about it.

Of course he wants me to start really working out again. And that I shouldn't be scared to work out at home and that I am fine.

He said I have a little murmur, but he is not surprised.

He said he talked to Dr. McCarthy the other day and he is giving 95% of his patients downtown tissue valves. He doesn't think anyone should be committed to coumadin when the trans catheter replacement is in such a near future. He said he is glad I made the choice I did, and that he thinks that is how my next surgery will be performed.

I REALLY HOPE SO!

So that is that. I called my surgeons nurse downtown to relay the news and she is going to talk to the surgeon about it tomorrow and let me know if he has any disagreements with what my cardio said.

I guess I will just hang in there and get over it! Move on and be happy:thumbup:

Speaking of happy, my PAC's are gone! I guess it took a true month of absolutely NO caffeine to help. Because that is the only thing I have done different. It's just funny how before surgery I could have 100 diet cokes a day no problem and after surgery, it affect me majorly!

Thanks again everyone. What a roller coaster ride we take when we learn about our hearts. Every day it's something new.

Jackie
 
Sounds great, Jackie!

I wish my experience with surgeons through my last Achilles Tendon tear hadn't so jaundiced my view of the surgical profession. Actually, my own experience was beautiful -- I went to a world-class sports-med surgeon, who introduced me to the best modern evidence and talked me OUT of having surgery!! -- but it was almost unique in the world.

Specifically, I've been watching the average blogger on AchillesBlog.Com, all around the planet, getting rushed under the knife (often within 24 hours -- no time to THINK, much less get a 2nd opinion!) by surgeons who either do, or should, know better. The patients are told that the surgery's essential, that it's urgent, that they'll never walk or run properly if they don't have it. Afterwards, they're told that their tendon was such a mess it's a miracle that the God-like surgeon managed to put it all together. They're SOMETIMES told that there IS a non-surgical alternative, but then they're ALWAYS told that it takes longer and doesn't work very well.

What they're NEVER told is that the gist of the four modern studies on the topic shows that conventional AT-repair surgery conveys NO benefit, and SIGNIFICANT surgical risks, compared to simple immobilization and a modern aggressive rehab protocol (exercise and PT and partial weight-bearing in a mere TWO weeks, full W-B in FOUR weeks, out of the boot after EIGHT weeks)!! That modern aggressive non-surgical protocol is generally FASTER than what the average SURGICAL patient goes through post-op, so it definitely does NOT take longer. THAT info they generally discover later, often while they're wondering why their incision isn't healing properly, or why all their old shoes irritate it, why they have to take Coumadin for their Deep Vein Thrombosis, or why they can't get rid of their subcutaneous "adhesions" from the surgery!

AARGH!! Without that toxic experience, I would simply take a heart surgeon's recommendation for a tissue valve at face value. With it, . . . not so much. My Dad always used to say "If you go to a carpenter, he'll tell you to make it out of wood." And I'm afraid I see a lot of carpenters in white coats here, all telling us that multiple surgeries aren't so bad, and that the next one will be done with a magic wand instead of a scalpel and a saw.

Me, I'm glad I went with a tissue valve, and my recent AVR surgery definitely was NOT "so bad", and I'm not dreading another one, even if it's another conventional full thoracotomy like this one. And I'm also finding ACT/INR/Coumadin a bit of a bloody nuisance so far, especially during this "silly season" when my GP is out of town, and my blood lab is closed. BUT call me suspicious if you like, but I count a health professional's opinion DOUBLE if it leads to LESS business for the professional and his joint practice, and I count it maybe HALF if it leads to MORE. I see massive ignorance and malpractice in the treatment of AT ruptures, and about 99.9% of it is in the self-interested direction for the surgeon, at the expense of the patient and the insurer. It's conceivable that the kids who grow up to be heart surgeons are nothing like the kids who grow up to be orthopedic surgeons, but I'd like to see a study proving that.

Some day, I may outgrow this jaundiced attitude -- maybe a year or two AFTER the average orthopedic or sports-med surgeon starts steering fresh AT-rupture patients AWAY from surgery that adds risks and no benefits. But not today, sorry.
 
Jackie,

Glad to hear it and glad to hear the views about the next surgery. I picked a tissue valve @ 51 with the idea that that procedure would be much more commonplace by the time I would need a 2nd surgery.
 
I know you were very worried and this is good news.I am happy for you.
 
Well, Jackie, this all sounds like good news, but it doesn't answer all of your questions does it? But, I hope it does put your mind to rest that you aren't an unlucky one to have gotten a "bad" valve and were going to be headed back for more surgery after only a year or so. Good luck going hitting the exercise once again (I keep getting that same speech as well and since my 3 year check up is fast approaching, I better be getting my butt on that treadmill myself) and I hope that maybe that will help you feel more like your old self. I also hope you get the clearance to start trying for that other baby you want in the next year or so. Keep us posted.

Kim
 
Glad to hear it Jackie! I admit it had me a LITTLE worried, but like I said, I just felt like there was gonna be some logical explanation. Glad there was! Now get back to your normally scheduled life and stop scaring us! j/k - scare us again if you need to - just hope you don't need to!
 
Good job, sweetheart...good job!!!!! Perserverance furthers. I think you really got some excellent answers that you can believe. If it were me, I would certainly calm down about things, don't get pregnant until you get permission and live your life thinking as little about all this as possible.

Isn't it amazing how our bodies can now seem to tell us what to do? I think that's the main thing I've learned about all this. Ya gotta listen. Or, ya gotta pay da price. So you've kicked the caffeine habit and your body is happy!! As if that caffeine was ever even remotely good for you. It wasn't. Good to be rid of it. Enjoy the break!!

Along with my 3 20-something kids, I'm working hard on the 3 pound box of See's Chocolates that my mother brought over for our holiday dinner. I know I will lie in bed tonight going ka-flump, ka-flump. But I also know that sometime tomorrow (if I stay out of that white box) my heart will go back into normal rhythm. It's almost a game. But I'm almost 5 years out now and I have figured out how most of this stuff works.... for me.

Again, Jackie. Good work. Find a buddy to exercise with so that there will be no fear.

Have a Happy New Year!!!

Marguerite
 
I sort of have a pit my stomach now thinking I maybe should have gone for the tissue valve. In my mind, there's no way to know when the surgery will improve. My tissue valve only lasted 7 years. I am stuck on Coumadin until they replace it with a better drug, but I will definitely be on meds for the rest of my life.
Not meaning to hijak your thread. I'm really happy for the good news for you! I'm now wondering though. Did I not think this through enough? I had both my cardiologist and the (extremely nice, angelic) surgeon recommending mechanical....guess it's too late now anyway...
 
Jackie,

I'm glad to learn your good news. Now you can get back to the business of everyday life, and maybe you will just power through these symptoms and some day soon realise you're feeling great!
 
Enudely said:
I sort of have a pit my stomach now thinking I maybe should have gone for the tissue valve. In my mind, there's no way to know when the surgery will improve. My tissue valve only lasted 7 years. I am stuck on Coumadin until they replace it with a better drug, but I will definitely be on meds for the rest of my life.
Not meaning to hijak your thread. I'm really happy for the good news for you! I'm now wondering though. Did I not think this through enough? I had both my cardiologist and the (extremely nice, angelic) surgeon recommending mechanical....guess it's too late now anyway...
Click to expand...

Enudely, don't regret making the choice you made. You'll drive yourself crazy! You made the best choice you could with the info. you had at the time. Be happy with that choice and the life that it's given you. Even though I have a tissue valve, I don't know that I'll be willing to be first in line when this one goes bad to get my valve that way. I know that may sound crazy, but I think I want a few more to go before me, so for me it may not be this time around but the one after definitely.


Kim
 
So, so happy to read your news, Jackie! I'm sure that you feel great relief and feel that you can move forward now! What a wonderful way to start the New Year! :)

God Bless you and may you continue to get nothing but good reports from here on out!!! :)
 
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