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Superman

Well-known member
Joined
Oct 2, 2009
Messages
1,918
Location
Grand Rapids, MI, USA
As some of you may have experienced, when you have a congenital heart defect it can be challenging to find a good cardiologist who stays up to date as an adult. Pediatric cardiologist primarily deal with congenital issues, but most adult cardiologists seem to focus on coronary issues and congestive heart failure. I had a decent one for a few years, but he moved on to our local heart transplant group. I hope to never see him again.

So fast forward a couple years, and we have a newer group in the area that specializes in adults with congenital heart defects, with one who focuses on implant devices (valves, pacemakers, etc.). I'm about 8 months overdue on my annual, but I have an appointment with this group. Hope this is one I can be comfortable with. Fingers crossed. Getting tired of shopping around.
 
Superman;n877944 said:
...........but most adult cardiologists seem to focus on coronary issues and congestive heart failure. .

I agree. I visit heart surgery patients weekly at a local hospital. Coronary(Bypass) patients outnumber valve patients about 4 to 1.......and these patients are normally in the age group 55-85.......and these patients need to be managed much differently than the 20-50 year old valve patient.
 
dick0236;n877945 said:
Coronary(Bypass) patients outnumber valve patients about 4 to 1.......and these patients are normally in the age group 55-85.......and these patients need to be managed much differently than the 20-50 year old valve patient.
And even BAV and other congenital heart defect patients in their 60's and 70's, or older, should be managed very differently to a coronary bypass patient, unless, of course they also have coronary disease. A month ago I was a day patient at a heart hosptial where I had a trans-oesophageal echo under general anaesthetic. A cardiologist came to ask me some questions about my prosthetic valve first and, part way through the conversation, asked, puzzled: "excuse me but why did you have heart surgery - you are much younger than the usual patient." I am 64 - had surgery for my BAV when I was 60.
 
Hi

Superman;n877944 said:
As some of you may have experienced, when you have a congenital heart defect it can be challenging to find a good cardiologist who stays up to date as an adult. Pediatric cardiologist primarily deal with congenital issues.....Hope this is one I can be comfortable with. Fingers crossed. Getting tired of shopping around.

Its a distinct issue isn't it. This is why I've tried to become expert in my own area. I can't hope to cover many other areas, but I do try to clearly understand my own. I won't say it had nothing to do with my degree choices when I was leaving school.

Myself I can only say that the problem is caused by speciality and diminishing people with exactly your issues (as you've alluded to). Its a bit like my motorbike. There are few of that model around (Yamaha T-Max) and few dealers can work on them adequately let alone expertly. Many can't even figure out parts properly.

I may be able to find one who can efficiently remove the fairings and do (say) a belt change in efficient time, but I then can't find one who knows much about the variators ... even then it may only be one or two fellas in the country.

So I became the expert and can do everything on it myself.

For the medical specialists to know enough about the subset of us (congenital BAV, no longer kids, complications of multiple surgeries) is a difficult and diverse task (we've all had slightly different surgeries) and on a diminishing set of the heart cohort. Obviously unless one is driven it would make sense to specalise in where there are more patients (but not so many as to be a cluster of other specialists also competing for work).

Within the medical system we are constrained (unlike my working on my own motorbike). One can't self medicate (self regulating the dose is about as far as it goes) and certainly one can't self surgery ;-)

Best of luck with a cardio search mate
 
I'm on my third cardiologist, Superman. The first one wanted to treat me as if I was 80 years old. . . but I was only 52. I fired him. I was lucky, though. I live in a very large city area, so I was able to research cardiologists who had a specialty in younger adult patients (as opposed to geriatrics) with valve issues. He was really great, and I stayed with him for some years. Unfortunately, he left the area, moving to a practice that is too far to drive to. He and I spoke and he referred me to one of his colleagues, with whom I have stayed for years. The n"new" guy has helped me through my surgery and all subsequent follow-up, and seems to be equally well up to date on valve issues. We regularly discuss research and new ideas, and it is a very good relationship for me. I guess those of us who live in major metro areas are lucky to have a lot of docs to choose from.
 

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