12 Weeks Post Cardiac Rehab Report

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StretchL said:
Ross, Ross, Ross... why all the negativity, buddy? I know you're not picking on me (or doing so only with the best intentions), but are you saying there are no more than five people our of 1700+ members who've gone through OHS without serious complications? You know that's not true.

The stress test was part of the cardiac rehab process. They did one at the beginning to find out at what level to start my therapy, and one at the end, to find out how far I'd progressed.

I do count my blessings, amigo, nearly every day. I'm very, very thankful for the way things have worked out thus far. :)
No, but your one of the very fortunate ones where everything went pretty much like it should. Take a look at this last weeks surgery folks, I think they all had a hard time, some have not been heard from as of yet. What I meant by I can count on one hand, are the people that went in, had surgery and were out in less then 5 days and home posting like nothing happened. Oh ok, maybe it would take more then 5 fingers, but not much more.

Yes, I guess I'm envious of you and others that got through it all just fine. Someday I'd like to know why some people do just fine and others go through hell. I know that has nothing to do with you, but just in our head buttings elsewhere, I feel as though what I went through both times was discounted or even unbelievable by some standards and that bothers me. As sure as you know how it went for you, is as sure as I know how it went for me. I wish it would have went any other way then it did (for me). ;)

We are here telling others of our experiences, and while some will scare the hell out of you, some are great outcomes too. I just don't want folks to ever lose sight that they may not be as lucky. I know I went in the last time thinking I'd much better afterwards and came out much worse. Last thing I bargained for was to be on O2 for the rest of my life and a heart the size of Texas looming in my chest, knowing I have more that I'm not looking forward too, to happen in the future. It happens and no amount of looking at great outcomes changes this if it's you that it happens to. I sincerely hope you see what I'm saying.

I do congratulate you on the check up though. The more any of us get through without something else being found or added is nothing but great.
 
Stretch,

Congrats!!!!! Glad to hear you're doing awesome. You're a bit of a slow starter :D but I knew you would be a juggernaught once you got moving...;)

Sorry I haven't been around lately. Been too busy working to worry about heart surgery. It seems like a dream to me. I don't feel as if I had my chest cracked on 12/12/06..... I look in the mirror and marvel at the trepidation I felt prior to surgery and the amazing normalcy I have felt since shortly after surgery (pretty much completely normal since 8 weeks)...

I had my 3 month checkup today. HR=78 BP=118/78 Great EKG. Sorry I have no experience with cardiac rehab so no report there.

I feel blessed to have recovered the way I have. No disrespect to anyone who has/had difficulties but everyone I know personally that has had valve replacement (now a total of 5 other than VRE members) had a recovery similar to mine. So it is definitely possible.... perhaps probabable.

Stretch, Congrats!!!
 
There's so much to be addressed here that I'll do it in sections.

Ross said:
...your one of the very fortunate ones where everything went pretty much like it should. Take a look at this last weeks surgery folks, I think they all had a hard time, some have not been heard from as of yet.

Ross, I think one of the many differences between you and I is that you look at the world as if it's a glass that's half empty and someone's just waiting, somewhere, to drink up what's left in your glass. I see the glass as half full, and, while I know that it will eventually be drained, I'm going to enjoy and make the most out of the process.

Thus, you think we've not heard from the folks who've been away for a few days because something has gone horribly wrong. I'm assuming the worst has NOT happened, and look forward to hearing how well they've done.

I went into surgery EXPECTING the best! I think that positive outlook has contributed to my positive outcome.

Ross said:
What I meant by I can count on one hand, are the people that went in, had surgery and were out in less then 5 days and home posting like nothing happened. Oh ok, maybe it would take more then 5 fingers, but not much more.

Why in the name of God would you expect for ANYONE to be "out in less than 5 days and posting like nothing happened"? I seriously doubt if anyone goes IN realistically looking toward that kind of outcome! Sure, it happens once in a while, but you're implying that if this very unusually positive outcome DOESN'T happen, the procedure DIDN'T "go pretty much as it should."

The fact is that if someone goes in, stays five days or so, comes out and spends the next few months recovering their strength, and eventually ends up with a better quality of life than they had when they went in, THEN the procedure went pretty much as it should. And this is usually what happens. To imply otherwise is a disservice to people who come to this site for answers. FWIW, I stayed in seven days, was weak as a kitten for at least a month after surgery, and now three months post-op I'm finally feeling pretty much normal.

Ross said:
Yes, I guess I'm envious of you and others that got through it all just fine. Someday I'd like to know why some people do just fine and others go through hell. I know that has nothing to do with you, but just in our head buttings elsewhere, I feel as though what I went through both times was discounted or even unbelievable by some standards and that bothers me. As sure as you know how it went for you, is as sure as I know how it went for me. I wish it would have went any other way then it did (for me). ;)

Ross I hope that I've in no way made you think that I don't take your experiences seriously, or minimize their impact on you, or simply don't believe you. None of that is in the least bit true.

Likewise, I hope you can understand that those of us who have positive outcomes are reluctant to post those outcomes for fear that we sounds like we're gloating. (I believe it's akin to "survivor's guilt.") I've simply decided to post my experiences and trust that readers will understand that I'm not bragging, but hopefully encouraging.

Further, I do believe that your experience is the exception rather than the rule. I have talked with too many people both on this forum and elsewhere who have had largely uneventful AVR experiences to believe that the kind of trauma you've been through is not exceptional.

Why are some outcomes on one end of the spectrum and some at the other? Well, there's probably dumb luck, but as someone who puts a great deal of faith in science I think there are also relatively reliable predictors of the various outcomes that we could examine.

The first thing that comes to mind in your case is that your first procedure was a repair of a dissecting anyeurism, one of the most difficult and least predictable heart surgeries out there. Unfortunately, you had the cards stacked against you before you went under the knife, and from what I understand about that surgery, anyone who survives to tell about it is damned lucky.

My aortic valve replacement, on the other hand, was pretty straightforward from the get go. I was symptomatic only for a short while, had elective rather than emergency surgery, and had the luxury of choosing not only the procedure but also the surgeon after months of diligent research.

Beyond that, and possibly because I've always known about my heart disease, I've done my best over the years to stay healthy. I don't eat much red meat or sweets, I've never used tobacco products, I've exercised regularly, had a job that didn't keep me behind a desk 40 hours a week, have always kept my teeth and gums in good shape, and have a taste for beer and wine that has kept my arteries in better shape than they ought to be considering my historical cholesterol levels. I have no doubt that all of these, as well as my outlook, contributed to my positive outcome.

Ross said:
We are here telling others of our experiences, and while some will scare the hell out of you, some are great outcomes too. I just don't want folks to ever lose sight that they may not be as lucky. I know I went in the last time thinking I'd much better afterwards and came out much worse. Last thing I bargained for was to be on O2 for the rest of my life and a heart the size of Texas looming in my chest, knowing I have more that I'm not looking forward too, to happen in the future. It happens and no amount of looking at great outcomes changes this if it's you that it happens to. I sincerely hope you see what I'm saying.

I do congratulate you on the check up though. The more any of us get through without something else being found or added is nothing but great.

Ross, I think I do see what you're saying, and I do sympathize with you and appreciate your positive words. But there are two things that I think are very important to maintain in this forum for the sake of those in the waiting room. The first is a positive attitude, the second is objectivity, and I will do my best to ensure both have a place here.

I'm sure just about any surgeon out there would tell anyone that it's better to go into surgery with a positive attitude rather than with fear. Fear is the great destroyer- nothing positive can be born of fear.

Finally, any objective look at contemporary valve replacement surgery will result in finding many, many, many more successes than failures. In the overwhelming majority of otherwise healthy patients it is an uncomplicated, if challenging, affair. Without minimizing the pain of your particular experience, Ross, I will maintain that if we are to be truthful and helpful to others might read these posts, we absolutely MUST communicate this as fact.
 
I just want to support Ross in what he is saying. I don't see it as "negativity" but rather as an honest summation of the facts. And let's be honest, not everyone has great outcomes. I've been thinking about it, and maybe it is up to each individual to try and make the best out of what they have been dealt in life, as I think Ross does - he does a great job in maintaining this site, when probably a lot of the time he feels like crap health-wise.

You're right about being positive about going into your surgery Stretch, and being good to yourself by eating healthy, not smoking etc - I did all those things too, have always exercised, not drunk much and so on, but I still had a less than good outcome with two pericardial effusions with cardiac tamponade, then finally a second op to drain the fluid surgically. So I reckon a bit of it does come down to luck - you've been lucky mate.

Anyway, congrats on your 12 week check up - keep up the good work.

And Ross, thanks for maintaining a GREAT site, and welcoming and supporting newcomers, especially in the ACT forums.

Bridgette
 
Congratulations on your recovery Stretch. It's funny that you would post this now because it was just last week when I was thinking that I was finally 100% or better. And if you remember my surgery was about a week before yours. So maybe it is about 12 weeks til one feels close to 100%.

What exactly is entailed in cardiac rehab? I have only ever heard of it on this site...I assume it is kind of like PT except for the heart?

Brad
 
Hi, Brad. I'm glad you're doing so well!

Cardiac rehab is, yes, basically PT for the heart. It's basically treadmill work, walking while they measure your heart rate, blood ox, and bp. They increase the speed with each visit, but only slightly.

They also have patients do very light weight lifting (0-6 pounds in each hand), to strengthen the shoulders and the areas around the sternum.

I think it helped me a great deal. I know I was more willing to push things in there, while being monitored, than I would've been at home on my own. And I never would've done the weight work.
 
I agree stretch. I don't want to be seen as "gloating". However an accurate summation of the facts presents a very positive picture of valve replacement (in the absence of serious comorbidities).

I DID go into the hospital with the realistic expectation and plan to be out within 4 -5 days depending on how you count the days. This is the NORM not the exception. My stay 12/12 (7:00 am) to 12/15 (10:00 am). One trip back for pericardial effusion (yes a bummer at the time but only a small blip on my recovery chart) in 12/26 (2:30 pm) to 12/27 (3:30 pm).

All five people I know personally (other than VR.COM members) that had valve replacement were out of the hospital in less than a week and generally felt fully 100% recovered between 3 - 6 months.

"The average patient stays in the intensive care unit 1 night and 5 to 7 days in the hospital. The patient then is discharged home and gradually increases activity over the next 4 to 6 weeks when full recovery is achieved."

Avg Stay - AVR at CVTSC
---------------------------------------------------------------
"Generally, most patients can leave the hospital 5-6 days following surgery. It is important to have family members or friends available to assist you in your first week home. "

Most go home 5 - 6 Days at BWH
---------------------------------------------------------------

"Shorter hospital stay - in many cases, only 3 to 5 days are needed (instead of the average 5 to 7 days for traditional surgery)"

Cleveland Clinic - Avg Stay for min invasive and traditional
---------------------------------------------------------------

Not to say that there aren't risks. Of course there are. Not to say that there aren't difficult surgeries and difficult recoveries. Of course there are. Not to say that there aren't fatalities. Of course there are.

However, the general prognosis for single valve replacement in the absence of other major medical issues is hugely positive. The general outcome for all types of heart surgery are largely positive.

Painting a realistic picture involves outlining the risks (which almost always involve a much shorter lifespan if surgery is not undertaken) and presenting the positive and negative outcomes based on facts and statistics as well as experiences of people we know.

Overall I'm very encouraged and those waiting should be too. While these surgeries are very serious and scarey, the positive outcomes far outweigh the negative outcomes.

Don't take it lightly, just take it optimistically!

David
 
Hey David
How long has your heart rate been down to 78?
I had my op on 11th Dec but my H/R is still up in the mid-high 90's. Are you on medication for it?
My cardio says it will slow down on its own eventually, and doesn't want to put me on meds at this stage.
I am walking and exercising a lot, but haven't seen much improvement yet.

Sounds like you're doing well - good on ya mate (NZ saying) :)

Bridgette
 
Stretch,
Everything sounds as though you are making a strong, consistent recovery . . . way to go!
I believe having one of the best surgeons in the country, Dr. Paul Stelzer, with a first-class surgical team, contributed in no small part to the predictability of a good outcome.
Your overall health habits before, and the subsequent cardiac rehab afterwards, showcase the importance of a proactive approach and involvement in our own health care.
I wish you many, many more good reports!:)
 
Bridgette,

I don't know really. I haven't been monitoring my HR or BP regularly at home. I could feel that it had slowed down for the last couple weeks but haven't directly monitored.

I'm on two baby aspirin per day and am going to start 1/2 of lowest possible dose of Toperol XL since there is some evidence to show that it increases longevity of Ross graft.
 
davidfortune said:
I'm on two baby aspirin per day and am going to start 1/2 of lowest possible dose of Toperol XL since there is some evidence to show that it increases longevity of Ross graft.

DF:

Could you either post or e-mail me the details about the Toperol and the baby aspirins? I've not heard/read anything about either re: Ross.

Thanks!
 
Hi Strech,

From what I understand...Toprol loweres blood pressure and the "force" with which the heart beats. By doing this it lowers the burden on the neo-aortic valve and thus reduces the incidence of dilation in this valve. The neo-aortic valve has a tendency to dilate because the pulmonary tissue is not used to being in such a high-pressure environment. This dilation can pull the leaflets of the valve apart and cause regurgitation or stenosis. Thus, why Dr. David pioneered the valve-sparing procedure for Ross patients by replacing the root of the neo-aortic valve which had dilated. In these patients the valve leaflets were in perfect shape, the dilation/aneurysm was the only problem.

I'm not sure if Toprol has any effects on the structural deterioration of the valve and its leaflets. I have never seen any studies on it. Although the mechanism by which it would is not clear.

Brad
 
Bradley White said:
Hi Strech,

From what I understand...Toprol loweres blood pressure and the "force" with which the heart beats. By doing this it lowers the burden on the neo-aortic valve and thus reduces the incidence of dilation in this valve. The neo-aortic valve has a tendency to dilate because the pulmonary tissue is not used to being in such a high-pressure environment. This dilation can pull the leaflets of the valve apart and cause regurgitation or stenosis. Thus, why Dr. David pioneered the valve-sparing procedure for Ross patients by replacing the root of the neo-aortic valve which had dilated. In these patients the valve leaflets were in perfect shape, the dilation/aneurysm was the only problem.

I'm not sure if Toprol has any effects on the structural deterioration of the valve and its leaflets. I have never seen any studies on it. Although the mechanism by which it would is not clear.

Brad

My brother Forrest, now deceased, had a Ross Procedure is 1995 at age 32; seven years later he got a mechanical because the pulmonary valve didn't hold up well in the aortic position. He developed an aortic aneurysm. I don't know what meds he was taking, but I know he was on a lot. It does seem that for some people the pulmonary valve is overstressed in the aortic position. I wish that I was aware of valve issues then; selfishly (unintentionally) I didn't start learning until after I was diagnosed with BAV. I sometimes wonder if what I've learned here at vr.com could have helped my brother extend his life. Who knows?
 
StretchL said:
DF:

Could you either post or e-mail me the details about the Toperol and the baby aspirins? I've not heard/read anything about either re: Ross.

Thanks!
Stretch,
If my memory serves me right, you experienced some TIA's prior to your procedure. For that reason, my cardio upped my dose of enteric coated aspirin from 81mg to 325mg after replacement. I believe that is fairly common.
Regarding the Toprol XL (which I take for heart failure) and its effectiveness in prolonging the pulmonary valve's function, why don't you ask Dr. Stelzer?
Before you joined, an Australian member had questions about his procedure
(they felt that possibly his pulmonary valve was undergoing rejection) and with his permission, I sent the question to Dr. Stelzer for his thoughts. As you would expect, he immediately answered the question and gave me permission to share it with the entire forum.
Just a thought . . .
David,
I'm currently taking 12.5 mg of Torpol XL; I assume that's the dose you would start on?
 
Yes, aspirin may help to lower the risk of developing blood clots in all individuals (not just those with a non native heart valve). Many physicians recommend it to all patients over 50 years of age...whereas it may lower the risk of heart attack and stroke.
It is widely prescribed in the 81mg dosage (baby aspirin). Even if there is no benefit (which I find unlikely) most people have no side effects to a low dose a daily aspirin so it is probably worth taking it (especially since it costs very little).

Brad
 
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