Cardiac Rehab question concerning patients born with congenital heart disease...

[Navin323i]

I have something that has been bugging me for quite sometime now that I wanted to share... I've survived 5 heart surgeries at various points in my life (two at the age of 3, one when I was 8 years old, one when I was 19, and the last one when I was 27).

At NONE of those times was I ever given the option of undergoing cardiac rehab. My father had a heart attack in his mid 60s a few years ago and survived, but was given cardiac rehab which greatly benefited him and sped up his post surgical recovery.

It seems to me that young folks born with congenital heart disease aren't given the option of undergoing cardiac rehab... maybe insurance companies feel that young folks don't need cardiac rehab and can recover on their own because of their youth. I strongly disagree with this statement and believe that both young and old can benefit from undergoing cardiac rehab. This is something I may take up with the American Heart Association and see if I can help with making cardiac rehab an option for everyone both young and old.

Did any of you here who underwent heart surgery(s) at young ages given the opportunity for undergoing cardiac rehab?

Thanks,
Navin

 

[Allisoninoz]

Hi. I had PDA in '72 at age four and coarctation of the aorta at age 11 in '79, both at Melbourne's Royal Children's Hospital. I remember some unpleasant stretching to 'I'm a little teapot' for my thoracotomy scar but that's it. I think the theory was that kids run around and do their own rehab. I wish my parents had been offered more formal rehab as my back and side muscles have never been right.
Three weeks to go until my BAV .... Arrrrrrrrrrggggggggggggggggghhhhhhhhhhhhh! :0

 

[dfelder]

I had valve surgery at 16 and 28. I wasn't offered any when I was 16, but was offered it last year when I had surgery. I was the youngest in my rehab at 28.

 

[Navin323i]

Hi. I had PDA in '72 at age four and coarctation of the aorta at age 11 in '79, both at Melbourne's Royal Children's Hospital. I remember some unpleasant stretching to 'I'm a little teapot' for my thoracotomy scar but that's it. I think the theory was that kids run around and do their own rehab. I wish my parents had been offered more formal rehab as my back and side muscles have never been right.
Three weeks to go until my BAV .... Arrrrrrrrrrggggggggggggggggghhhhhhhhhhhhh! :0

Hi Allison! Thanks for sharing. Good luck with your surgery! I'm still getting used to the acronyms that you all use here... BAV I'm guessing is bicuspid aortic valve (which is what I was born with), but what is "PDA"?

Navin

I had valve surgery at 16 and 28. I wasn't offered any when I was 16, but was offered it last year when I had surgery. I was the youngest in my rehab at 28.

Thanks for the info! Interesting that you were offered it at 28 (at 27 I wasn't offered it, however my surgery was almost 10 years ago so they might be slowly changing now and offering rehab to younger folks).

 

[Allisoninoz]

Hi Navin ....
Patent ductus arteriosus (PDA) is a heart problem that occurs soon after birth in some babies. In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart.
Before birth, the two major arteries—the aorta and the pulmonary artery—are connected by a blood vessel called the ductus arteriosus. This vessel is an essential part of fetal blood circulation.
Within minutes or up to a few days after birth, the vessel is supposed to close as part of the normal changes occurring in the baby's circulation.
In some babies, however, the ductus arteriosus remains open (patent). This opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can put strain on the heart and increase blood pressure in the lung arteries.
These days, they pick it up very quickly. Back in '72, that wasn't the case for me! (And I was born in the country, so maybe just a lack of experts in the area?). Wasn't picked up until I was in kindergarten - then fixed very quickly.
Cheers

Hi Allison! Thanks for sharing. Good luck with your surgery! I'm still getting used to the acronyms that you all use here... BAV I'm guessing is bicuspid aortic valve (which is what I was born with), but what is "PDA"?

Navin



Thanks for the info! Interesting that you were offered it at 28 (at 27 I wasn't offered it, however my surgery was almost 10 years ago so they might be slowly changing now and offering rehab to younger folks).

 

[Philip B]

Rehab Opportunities

Rehab Opportunities

Cardiologists vary with respect to their opinions concerning cardiac rehab. Even though I was in my early fifties when I had AVR surgery, my cardiologist indicated that he didn't always recommend rehab for his patients. He also told me that he wouldn't have insisted that I do a rehab program if he hadn't wanted to slow me down just a little.

I suspect many have the opinion that active, young folks simply don't need a formal rehab program.

-Philip

 

[AgilityDog]

There was a 24 year old who'd just had a Ross procedure in my rehab class. He had some bumpy road issues, though and wound up back in the hospital for a few days. Of course, we had the same surgeon, at the local specialty Heart Hospital, which pushes rehab to EVERY patient, before you even check out!

 

[Guest]

Did any of you here who underwent heart surgery(s) at young ages given the opportunity for undergoing cardiac rehab?

Nope.

I've had 3 open heart surgeries ... November 1977, March 1987 and January 2003 ... the last one at age 29 ... and no cardiac rehab was mentioned or offered to me....



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"Shouldn't have to give a reason why" __ Chris Daughtry __ 'No Surprise'

 

[drivetopless]

I'm 46, almost 47, though I look like I'm in my 30's. I am 4 weeks post op. I'm hoping to have access to cardiac rehab. Before my surgery both my surgeon and my cardiologist mentioned I would not need cardiac rehab because I'm "young." I think I will insist on a few weeks of it at least if my insurance will cover it.

I just spent 10 days in the hospital for post-surgery afib and moderate CHF. I still am in occassional afib even with meds and not sure yet how it will be corrected (meds or possible ablation). I would feel better getting my heart working with some monitoring that you get in rehab.

 

[normofthenorth]

Once when my Dad was in his mid-to-late 80s, he came to Toronto with his Shrine Band. They competed in the Marching Division and in the Concert Division. I think they won the Concert Division, but only came in ~3rd in the Marching Division. I asked Dad why the big difference, and he said it was because several of their best players were too old to March, so they only played in the Concert Division part. In fact, he told me, the average age in his band was (his words) "two weeks dead"(!). My Dad was a card.

My own Cardiac Rehab class hasn't officially begun yet, but when I looked at the class ahead of us last week, their average age looked about the same as my Dad's band. I don't know how a youngster would do in a class like that -- heck, I don't even know if I'm going to stick around, and I'm 65!

I'm guessing that there are too few OHS/HVR kids in most places (at one time) to justify a rehab class for themselves, even if the Docs thought that the program would be of use. Just guessing. . .

With the increasing availability of cheap workable HR monitors, it may be worthwhile for the young 'uns to get some private coaching about exercise routines and HR ranges, then be sent off to do the workouts. . .

 

[jasonan]

I'm a 21 year old male who had his aortic valve replaced and I was offered cardiac rehab. I used it extensively and I think it helped me greatly since I'm back and running and in almost as good as shape as I was. I hope that everybody can do it after surgery regardless of their age.

 

[scott.eitman]

I think like everything else, it depends on the individual.

At 34, I was not offered cardiac rehab, but was told what to do to rehab myself. At 46, and looking like I am in the 30s (that is for driving topless :wink2 I was told to go to rehab. Now this is for a guy who had already ridden my bicylce about 800 miles last year pre-op. I think my cardio knew I was going to push myself and wanted me to be monitored when I did so.

 

[Greg a]

There is new data on cardiac rehab in general and Mentu/Larry has startedd a thread http://www.valvereplacement.org/forums/showthread.php?37503-New-Study-Benefits-of-Cardiac-Rehab-Feb-2011

 

[MarkU]

I had my AVR ten years ago at age 47 when I got a St Jude mechanical valve. I had been physically active my entire life and was asymptomatic until about six months prior to my surgery. My docs told me that rehab wouldn't be of any benefit to me and told me to just go home and walk as much as I could every day.
Mark

 

[JeffM]

I think it's a combination of reasons: 1) belief that most youngsters--those who are obese being an exception--will move enough to aid their recovery; 2) Some docs make the call based on the individual. 3) Eenie Meenie Minie Moe(sp?). At 52 it was never mentioned to me after my AVR. Yet, I know another athlete, 10 years younger, who was offered it by the same surgery group I went to. Neither of us could come up with a reason why one would be offered it and the other not.

 

[MikeB]

I was born with Aortic Stenosis, had OHS @ 3 mos and my AVR @ 20yrs old, I am 28 now. After my AVR I did cardiac rehab 3 times a week for 2 months, that was the insurance limit.