I had a ventricular septal defect as a baby, developed congestive heart failure, was put on medication for awhile to mitigate the effects of CHF, and was finally operated on when I was 1 years old. The operation fixed the hole, I went in for regular check-ups throughout my childhood, and everything was fine - I was given a clean bill of health.
However, I’ve found that pretty consistently I’m behind other people on physical development. For example, when running the mile at school, all the other kids could run it at a fairly quick pace. I got too out of breath after a quarter mile and would have to walk/run it. I later discovered that I could actually run a mile, but I had to run very, very slowly, slower than a fast walk. I’ve since tried training programs like Couch to 5K but never made it very far. I’ve also just generally been bad at physical activity.
Here’s my question. Is it possible that having congestive heart failure for the better part of a year as an infant would affect my development somehow? I’ve tried googling this question and have come up with nothing, but surely this is something doctors have researched, right?
I’m not looking for medical advice here, and it’s not like I want to run a marathon or anything (though I do want to be able to hike a mountain without getting horribly out of breath). But I’m mostly just curious if I’m just naturally out of shape (who knows, maybe it’s genetics), or if it’s because of my experience. Nurture vs. nature and all that.
I strongly suggest that you seek advice at a center with an interest and expertise in adult congenital heart disease. Usually, this means somewhere affiliated with a university. I’m most familiar with those in Canada especially this truly excellent one (at my school).
It may be of interest to know (if you don’t already, that is) that one of the new sub-specialties of Cardiology is exactly what I’m talking about and what you would seem to have by definition - adult congenital heart disease. In other words, there’s a whole field of knowledge and specialization in the area.
It is only in the last couple of decades that people who were born with various heart defects have survived into adulthood (in sufficient numbers) to allow proper study. For example, kids who had various operations for cyanotic congenital heart disease can develop a unique set of cardiac (and sometimes pulmonary) problems as adults. That knowledge simply did not exist before 1990 or so.
That’s the thing, I don’t think there’s anything wrong with me now. I received regular cardiology check-ups while growing up, the last was when I was 20, I think. At all of my check-ups, I received a clean bill of health. I even had a panic attack a few years ago that I thought was heart-related - they had me wear a Holter monitor, which the cardiologist reviewed, and there was no sign of anything wrong.
So I don’t think I have adult congenital heart disease, but I’m wondering if research has been done as to how it might have affected me developmentally.
The word “disease” is adult congenital heart disease is misleading. It just refers to people who had a congenital heart defect and are now adults. You’re right - many, maybe most, no longer have disease. But, some do, and it can be occult. Or, associated congenital heart problems, undetected in childhood, may have emerged. Or, even more generally, the surgery itself may have altered the normal ‘physiology’ to the point of causing problems as an adult.
In terms of your development, I won’t comment because I am certainly not knowledgeable in the area.
My bottom line point in all this is that, notwithstanding your previous assessments, it may still be a good idea to see someone who does nothing else but see adult patients who had congenital heart disease. Often, they have particular skill in interpreting the echocardiograms in such individuals which are an area onto themselves.
If you have an HMO remember that they can refer you out of network (OON) if there is no one in-network with sufficient expertise for the condition. Accomplishing that usually requires the support of your primary care provider and an appeal to the medical director and Utilization Management Committee … may require an initial visit to an in-network provider who also supports the need for expertise outside of their range (referencing and showing up with that article and an open mind asking what they think may help). And if the specialist center is approved they may want to redirect you to in-network for imaging or testing if advised. Of course “can” does not mean “will” but having served on a QA/UM committee for years a calm reasoned and well supported appeal case is often approved on review by Director or full committee. The latter is often our approach: see an in-network specialist and if they concur that the expertise need of an OON provider/center is required then approve it.
If a PPO well you may need to pay a higher fraction but you can go anywhere you want.