New Cardiologist

[Nocturne]

I met with a new cardiologist the other day -- one who was recommended by my hormone doc after he saw the results of my CAC score.

After meeting with her, I promptly fired my old one and took her as my new heart doc.

She was very thorough, addressed half of my questions before I even asked them, scheduled me for Apo-B and LDL-P testing before I even asked her to, knew about potential treatments for high Apo-B, and informed me that my ethnic subgroup (French Canadian / Acadian) is a "founder population" for familial hypercholesterolemia, which she believes I have because of my very high LDL cholesterol combined with low-normal triglycerides (and it would explain degenerative calcific AS at such a young age as well). She ordered cholesterol testing for all of my kids, doubled my statin dose because she wants to see my LDL get below 70 and didn't feel that I could do much more with diet, and in other ways showed me that she was committed to trying to prevent or stave off further heart damage as much as possible.

She knew about Ornish, Esselstyn, and even Budoff, and had coherent opinions about each.

This is in contrast to the cardiologist I fired, who basically blew me off about all of this stuff and insisted that my CAC score was "frozen" because I was on a statin (which the literature and studies after 2005 or so reveal is NOT true).

Still sorting out how I feel about the likelihood of having a genetic condition that about half of my four children are likely to have too. But at least if I get to the bottom of it with this doc, I can help prevent my kids from having to go through this (people with FH can live normal lives if the condition is caught and treated early enough).

And this woman is trying to help me be as proactive as I can, rather than wait passively until I need CABG or worse. So that's good.

I'll feel terrible about having to give the kids lifestyle altering news, if it comes to that, but from my vantage point I wish I'd had the luxury of knowing I had the condition when I was young enough to do something to keep it from trashing my heart.

 

[epstns]

I love it when we find docs who are so. . . with it. She sounds like just the right doc for you. I know the feeling when you find them - it has happened to me in a couple of specific specialties. She sounds like a keeper, for sure.

As for any bad feelings you may have about the discussion you plan with your children - it may be a bit difficult for you, but it is for the best for them. Since I had a BAV, there was the possibility that my daughter (only child) might have one, too. I had to sit down and talk with her, explaining that she may or may not have the condition and that even if she did have it, she may or may not ever need treatment of any kind. I was most anxious about how to present the ideas and how she would react. I needn't have been. Young people are incredibly resilient. She understood the situation easily (of course, by that point in her life, she had done medical/psychological research in grad school), accepted its potential severity, and hugged me. She thanked me for telling her, and said that she would arrange to be tested. . . when she felt she needed to. She waited a couple of years, finally getting an echo when she was planning to start her family. Fortunately for her, she has a normal valve, but my point is that she did not come unglued at the possibility that she could have a serious heart condition. She was aware of my condition and all the surgery it required, and was comfortable knowing that she needed to be tested. She then owned the process. I'm sure that if she had been found to have a BAV, she would have competently taken on her own care management and lived her life.

We cannot control the lives of our children. My daughter may be older than your children (she is now 30), but the feeling is still the same. When they are younger, we control more of it, but never all. We can only do what we can do, then the rest is up to them. If your children are found to have the same conditions you do, and they are young and still "minors" then by all means get the best care you can manage. In the long run, they will thank you for it, and that is part of being the dad you want to be.

 

[Paleowoman]

Hi Nocturne - glad you've found a cardilologist you are happy with. When my endocrinologist thought I might have familial hypercholsterolaemia he referred me to a lipd specilist (I don't have it). There are some genetic tests (rather expensive) and other cheaper tests that can be done to confirm FH and which type too, here's quite a comprehensive website with several pages on the FH "workup": http://emedicine.medscape.com/article/121298-workup

 

[cldlhd]

Good to hear. As for the kids it's understandable to feel bad but it's not like you had any control of it and it was either have the two of you as parents or not being around at all.

 

[Nocturne]

Thanks. I guess it makes me feel a little better knowing that this wasn't entirely my own fault -- although I could have had warning of what was happening if I'd just had my cholesterol checked sometime in my twenties or thirties. I had a friend from work strongly advise me over coffee to get a GP doc "while you're young and healthy, before you get sick" -- coincidentally, she died of cancer only a few years later -- back in my mid twenties. I was busy with work and divorce and a baby... and I never saw a doc. That conversation over coffee is burned into my mind now.

 

[cldlhd]

Hell I didn't start getting mine checked until I was in my early 40's. Most of us men think we're indestructible when were young. If not nobody would have explored the world. No use beating yourself up for being human. I get what you're feeling though, kids are great. I took my 10 year old boy for a ride today and made an impromptu stop at an old library built in 1802 in this little town called Fallsington, Pa. He'd never been in that particularly library before and while he gets the idea of the free books he did find it pleasantly surprising that they also had free movie "rentals". It's funny the little things that make them happy.

 

[Agian]

French Canadian, Ashkenazi, Afrikaners and Lebanese.

Major breakthroughs in the treatment of FH, with the PCSK9 inhibitors.
60% reduction in LDL, Apo B.
40% reduction in Lipoprotein (a)
Folic Acid reduces Homocysteine.

Treatable!

 

[epstns]

Nocturne - Don't beat yourself up - especially about not finding out earlier in life. Would that have made you decide not to have children? I didn't think so. That you are now aware and can have the young ones screened to that they can be treated/protected as necessary is all that you can do.

 

[Nocturne]

Yeah, I know it's VERY common for men not to get their cholesterol checked until they turn 40 -- and when I turned 40, I *did* go out and get a GP doc before I knew anything was wrong (but I had noticed my heart pounding a bit when I lay down to sleep at night by then). I'm trying to focus on the opportunity I can give my kids as opposed to the opportunity I lost.

It's more than just my kids. If I have FH, it no doubt came from my paternal grandfather (who died of a heart attack in his 50s, just like his father before him). My other grandparents all lived to be 89-97 years old. My father has seven brothers and sisters, ALL of whom have 2 or more children (one has at least five), and almost all of those cousins of mine have their own children. It's a big family. Some of the older folks have known about heart issues in the family for a while, but it wasn't plainly spoken about. I'm not sure any news I have will be well received -- people do like to "accentuate the positive" and that sometimes means burying heads in the sand -- but most of you can guess that I'm not going to keep my mouth shut about this, so. And on the positive side, Agian is right -- it's treatable and the damage can be minimized if caught early enough.

I think it's weird that FH prevalent among Ashkenazi Jews as well as Acadians/FrenchCanadians (I've read one in 65 as opposed to 1 in 250 for the general population). Both groups also have a high incidence of Tay-Sachs disease, which thankfully does NOT run in my family.

In any event, it would explain WHY I have calcific degenerative AS at such a young age. It doesn't change anything, really, but it is a sort of comfort to know.