Met with "genetic counselor"

[Nocturne]

Met with a genetic counselor and the cardiologist she works with the other day. They were both very nice people, and had clearly taken the time to read up on Lp(a) and the genetic component I had mentioned when I set up the appointment (they both said they had read up on it because they knew why I was coming to see them). The GC's specialty seemed to be familial hypercholesterolemia and we talked about how that condition's genetic component has a lot in common with the one for high Lp(a). GC agreed with me that addressing FH, and particularly its genetic causes and their ramifications, is still in its infancy in this country, and that for Lp(a) it is even several steps behind that.

As I expected, she told me there isn't much she can do for me. Apparently they will recommend apheresis treatments here for people with extreme FH who have suffered multiple heart attacks, but I'm still too healthy to qualify and that would be even if I had FH (which I only have a mild form of, if at all -- my real problem is the Lp(a), which we don't talk about much here).

The cardiologist said I am "a very interesting case" who is "beyond the realm of scientific knowledge". He suggested I double my statin dose -- that's actually what the last doc I went to did, double my statin dose, he suggested I double it AGAIN. Again, very nice people, but I get the impression that cardiologists don't do much besides sort people into one of three bins -- "Statin", "No Statin (yet)", and "Refer to Surgeon". Ask them to think beyond that and you get, after some deliberation, "Hmm... MORE Statin?"

Not sure where I am going with this. Apparently a good little patient just goes home and takes their Statin and quietly dies off stage after a while.

 

[pellicle]

Or goes home and enjoys life exuberantly

Make the best of the time you have. The only blessing we have is understand we are mortal and revel in what we have.

 

[Nocturne]

Enjoys life "exuberantly"? When pretty much everything they enjoy will hasten their death?

At this stage, I'm being irresponsible if I eat anything other than a leaf or a twig, drink anything other than water, or do anything other than exercise. God forbid I sit down to enjoy a movie or a book! Sitting is the new smoking, you know...

I guess I could live "exuberantly" if I got into extreme sports -- at least until the old aortic valve deteriorated too much. And I have no interest in extreme sports. To me, living "exuberantly" means going to New Orleans, enjoying a music festival with good booze, great food, and a few desserts -- going to a restaurant with friends -- taking my kids out for ice cream -- sitting and writing or playing video games -- and all such things are verboten now. The Reaper is always lingering nearby, observing and taking notes on a clipboard...

"Exuberantly" running a treadmill and eating salad (no dressing!) while everyone else around me gets to do so much more (and I always feel like a dog at Thanksgiving)... and then dying young anyway? Not good enough. Try again. I call a mulligan.

(I know you don't get to call a mulligan in real life -- but I would if I could, and that says something.)

 

[honeybunny]

Wow. I'm usually very sympathetic but not in this case. Maybe you're having a really bad pity party type of day but if not, you probably should talk with someone about your depressions. And FWIW, these parents would trade places with you in a heartbeat: http://www.khou.com/news/st-louis-area-boy-killed-in-tropical-storm-cindy-identified/451024133

 

[pellicle]

Enjoys life "exuberantly"? When pretty much everything they enjoy will hasten their death?

Broaden your mind my friend

 

[cldlhd]

I know even less about your condition than your cardiologist but if it's genetic would it be affected much by your diet? I'm not saying go hog wild but maybe the occasional trip to New Orleans. BTW that sounds like a good trip to me as well.

Pell I can see both sides of your point. Maybe the animals are better off not knowing about mortality?

 

[mikeccolella]

Hi, the below article from AHA discusses high lp(a) and strongly indicates that ldl lowering and Niacin are important therapuetically for those with your condition
If I were in your shoes I would demand 40 mg. Of crestor ( the highest dose of the most potent statin) and the highest dose of Niacin available or Niaspan which is a pharmeceutical form of niacin. The AHA claims NIACIN CAN REDUCE lp(a) BY 30-40%!!!
http://jaha.ahajournals.org/content/5/4/e003597

 

[AZ Don]

Hi,

Enjoys life "exuberantly"? When pretty much everything they enjoy will hasten their death?
Broaden your mind my friend

I couldn't agree more. It's not what you do occasionally that matters so much as what you do everyday. With a little effort you can find healthy meals that taste good to you, and maybe even enjoyable ways to exercise ... or just not sit so much. On the occasion that you want a steak or dessert, indulge yourself, but healthy foods can be tasty too and it's not so hard to find healthy options when you try. As for drink, last I heard one or two drinks are considered healthy (especially red wine). If you have more than that, again, it's not what you do occasionally that matters in the long run, but what you do daily.

Not sure where I am going with this. Apparently a good little patient just goes home and takes their Statin and quietly dies off stage after a while.

I think you know that this is your life and you have to take responsibility for it. Dr's can advise but ultimately you have to decide what is best for you.

Re. "extreme sports". There is actually research that show that the significant health benefits of exercise mostly disappear for those that exercise the most intensely. Just going for regular walks is a very healthy habit.

 

[Nocturne]

Wow. I'm usually very sympathetic but not in this case. Maybe you're having a really bad pity party type of day but if not, you probably should talk with someone about your depressions. And FWIW, these parents would trade places with you in a heartbeat: http://www.khou.com/news/st-louis-ar...fied/451024133

I am curious about what the tone of your response here was meant to be.

Of course we can always find people who would trade places with us "in a heartbeat". In my opinion, anyone with severe epidermolysis bullosa (look it up) has more right to be angry, upset, and depressed than any of us. But that observation can cut both ways.

A quick look at your profile reveals that your only heart problem seems to be aortic valve stenosis whose root cause was a bicuspid aortic valve. You got to live to the age of 62 before needing surgery, while carrying some extra weight (as I did) and enjoying mostly sedentary hobbies (as I did). You were born with a heart defect over which you had no control, but it was an isolated defect and, statistically (in part because of your age at time of surgery) the impact of your AVR on your lifespan and overall health is minimal. If you knew about that defect from an early age, and were able to use that information to make more informed health choices in your younger years -- congratulations! I envy you that, as well.

Unlike me, your AVS was not caused by a systemic genetic defect that has caused rampant atherosclerotic damage throughout your entire body throughout the course of your life, such that AVS is only one part of what is wrong with you -- a defect that went unnoticed for decades because no one bothered to look for it, that few doctors in your country even know about, that there isn't currently anything they can do about anyway (let's put the extremely hard to acquire in my nation new therapies that would at best still leave me well above the "extremely high risk for heart event" threshold off the table for the moment, please). My guess is that you got to blithely enjoy your forties and fifties, as I expected to once. Your body was not mass overproducing a highly atherogenic substance that led to extremely premature CDAVS, CAD, and sexual dysfunction. What a privilege!

Considering the AVS, the CAD, and the astronomical Lp(a), I will not likely live to be much older than you are now. Health wise, I would switch places with YOU "in a heartbeat" -- certainly and without question if I could keep my current age. Consider that. In my eyes, Honeybunny, you really ARE privileged.

Edit -- I see that you also had a single bypass. A SINGLE bypass actually has minimal impact on long term survival, assuming it was for the usual reasons. When you need two or more, the odds of trouble rise exponentially. Good for you!

 

[Nocturne]

I know even less about your condition than your cardiologist but if it's genetic would it be affected much by your diet? I'm not saying go hog wild but maybe the occasional trip to New Orleans. BTW that sounds like a good trip to me as well.

Diet and exercise cannot affect Lp(a) levels, but they can affect the usual markers and those matter even more when your Lp(a) is high. Plus I already have extreme coronary artery disease for someone of my age -- the CAC score of a 70 year old man at 42. So, knowing what I know about my health, it could be said that the slightest imperfection -- the tiniest of missteps -- and I could die very young and be said to have brought it on myself.

 

[Nocturne]

AZ Don, I agree with you (love your state, BTW). And I have come to enjoy the taste of many healthy foods -- just learned how to make a really nice eggplant casserole, and my wife cooks a mean black bean soup. And those two drinks a day are nice, as is the small piece of dark chocolate. I'm not saying that life is misery for me, but for the most part, those "occasional indulgences" you are talking about aren't even enjoyable anymore because the Reaper is always right there watching and writing everything down on his clipboard.

 

[Nocturne]

Hi, the below article from AHA discusses high lp(a) and strongly indicates that ldl lowering and Niacin are important therapuetically for those with your condition
If I were in your shoes I would demand 40 mg. Of crestor ( the highest dose of the most potent statin) and the highest dose of Niacin available or Niaspan which is a pharmeceutical form of niacin. The AHA claims NIACIN CAN REDUCE lp(a) BY 30-40%!!!
http://jaha.ahajournals.org/content/5/4/e003597

The AHA also does not recommend actually giving niacin to high Lp(a) patients, in large part due to recent studies that indicated niacin had no effect on outcomes for most people.

From the the link you provided:

"Niacin reduces Lp(a) levels by up to 30% to 40% in a dose‐dependent manner and in addition exerts other potential beneficial effects by reducing LDL‐C, total cholesterol, triglycerides, and remnant cholesterol and by raising high‐density lipoprotein cholesterol (HDL‐C); however, the available trials did not show any cardiovascular benefit with niacin administration as an agent to reduce residual risk of increasing high‐density lipoprotein cholesterol."

My lipid specialist told me not to bother with niacin because of this.

We have some pretty good data IMO showing that apheresis treatments really do improve outcomes, but those are expensive and in the USA the insurance companies encourage us to believe in the inexpensive healing power of prayer. Apparently I might qualify for apheresis after surviving two or possibly more than two heart attacks -- which is a pretty cost-effective policy for the insurance companies, since only about 25% of patients who could benefit from apheresis treatments will survive to qualify for them.

But you have a very good point (assuming my lipid specialist is wrong) and I am in the process of working with an online doc who will be using niacin and possibly other things to lower my Lp(a) as we can (because none of the local ones seem willing to go there).

But understand that even if I were to cut my Lp(a) in half, it would still leave me in the "extremely high risk for heart events" category -- it is really astronomical, so high that another regular poster here who also has high Lp(a) couldn't believe how high it was. To get out of that, even from a standpoint of Lp(a) (nevermind the extreme CAC score), I would need the sort of 90% reduction that MIGHT be bubbling up the pipeline with the new antisense drug being researched by Ionis Pharmaceuticals -- which is years from the pharmacy at best and will no doubt involve more years of struggle with the insurance companies afterward, if the battle going on right now over coverage for PCSK9 inhibitors is anything to go by. I watched a testimonial the other day where this guy with FH and a cholesterol in the 500s WITH STATINS who had had seven bypass surgeries before the age of 50 was denied coverage for his PCSK9 inhibitor. If insurance wasn't going to pay for him, then exactly who the Hell WERE they going to pay for?

But that's America.

 

[cldlhd]

At the risk of Captain Obvious territory the insurance companies only want to insure the healthy because they don't cost them any money. I blame them but in a way I don't because they are for profit companies. Who I really blame are the 'low information' voters who have been convinced they're better off in this system. There is great healthcare available in this country if your insurance company will authorize it or you're wealthy enough to pay out of pocket. I guess the calculation a lot of people make is "as long as me and mine is covered screw everyone else's. Ironically, in my experience, they tend to be the more vocally, superficially Christian amongst us. Sorry Nocturne if I hijacked a bit there ,I would also apologize to any offended but I still believe in freedom of speech and not the freedom not to be offended or confronted by a different opinion

 

[Nocturne]

No apology necessary, cldlhd. I think you are pretty much in the right. As for the PCSK9 inhibitors, the companies know they can't prevail in the long run, as these meds save lives -- they're just slowing the process of their being forced to pay down to a crawl. A number of people will die or suffer debilitating strokes or heart events along the way, buy hey, that's nothing personal -- it's just bidness.

I'm hoping I don't have a massive stroke while I'm waiting for the same game to play out with an antisense drug, only to have it finally become acquireable after I can no longer walk, talk, or use the bathroom (and then be used to keep me alive for years when all I really want to do is die).

But that WOULD be a pretty funny joke to the sort of entity that would give you heart disease in the first place, so...

 

[dornole]

Nocturne, you need therapy badly. Consider finding someone who specializes in grief, loss and transition and well as cognitive behavioral therapy to increase your coping skills. You seem determined to "win" at being dealt the worst hand in the history of the world and to ruin whatever years you have left with bitterness and morbid rumination. This is adding depression (NOT good for your heart) to your other significant health issues. And it will drive off people. Buddy, your chance of death is 100%, it is only a question of when. Find your heart treatment plan and if they can't help you, your only choice is to cope with the idea that you are mortal (and may die young or have limitations which does suck) and mental health care is where the health system may still be able to help you find more joy in the hours, days and years remaining to you. I suspect there's more going on with you than this heart stuff and you need more support than a forum can provide.

I DO know depression and the suffering it brings and I encourage you to focus your efforts there, whether it be through therapy, medication, reading self-help books, getting outside, changing how you eat, talking to a spiritual advisor, meditating, a support group, or whatever path you choose. It can become dramatically easier to cope with difficult situations with the right support and you can feel much better than you do now even if your health circumstances remain the same. Improvement FEELS impossibly difficult but you can actually achieve noticeable relief in days or weeks.

I'm aware you may now examine my medical history and conclude that I have no right to say anything to your superior levels of being dealt a **** hand in life. Fine. (Just don't do that to Pellicle . . . .) I really do have compassion for your situation. Break your pattern of lashing back and at least think about what people are telling you here.

 

[Nocturne]

Dornole, I do appreciate your concern, but I've already gone the therapy route. Went with the same guy I saw back when I got divorced, oh, 18 years ago. And just like that time, I quickly realized that I prefer changing the things I can't accept to accepting the things I can't change -- and part of that is taking the time and effort to let yourself see some very unpleasant truths.

If I'd gone the hunky dory route from the beginning, as my original doc suggested -- "just don't think about it and go live your life" -- all I'd know today is that I had AVS and that it was probably due to a bicuspid valve because of my age. Learning about the CAD, the CAC score, the Lp(a), the spelling error in my genome that my kids and family members need to know about (and I have a LARGE family) -- that was all MY doing, and all because, yes, I do tend to ruminate and investigate. Because I pushed and learned, I probably prolonged what is left of my health and life -- I'm on a statin and aspirin because of it, I'm poised to take advantage of an antisense drug as soon as possible, and I'll be on a niacin regimen soon. And more importantly, my kids will know about their own genetic issue, as will my extended family. They will have valuable information I didn't have -- all because of me and the way I chose to deal with my problem.

I'll take that, even though it caused me mental pain. Learning was the right thing to do, especially if it will help my kids. God knows I've had to have that conversation with relatives as I try to convince them to buy into cascade testing to learn which of us have Lp(a) issues. If you ask me, leaving your young child or grandchild in the dark about their increased risk just because you don't want to deal with the unpleasantness of it all is -- well, it's putting being NICE ahead of being GOOD, and that's an insidious trap. It's also weak and ultimately destructive behavior.

I talked to my wife about all of this a while back. She told me that most people who are confronted with an awful diagnosis (she is an oncologist) fall into one of two categories -- they either groan and complain instead of doing anything that might improve their situations, or they go full tilt on doing everything they can to be proactive and improve their odds. She told me that I'm weird because somehow I'm both at the same time. Remember, I've lost 60 pounds, totally changed my diet, exercise every day, etc. But I do grouse about it and I suspect I always will. On the other hand, when I went for my walk around the perimeter of the local golf course yesterday -- which I do every day -- while I HATED the fact that I HAD to do it, and that in doing it I was still not raising my heart health to even the level of the neighbor who sits on his couch and eats pizza all day, I did enjoy the beauty of the summer day and the lovely view.

I've probably mentioned this before, but -- I think this here describes me pretty well:

http://tvtropes.org/pmwiki/pmwiki.php/Main/KnightInSourArmor

I have a lot to do. In addition to the good health regimen, I've got to ferret out every branch of my family tree and get them to get their Lp(a) levels checked -- oldest first, because that's how cascade testing works. I've already given two aunts the good news that they are free of the misspelling in their genomes, so their descendents -- easily over 20 people now -- should also be clean. Eventually I will help find someone who is not so lucky, maybe someone young who still has time to make a difference, or more of a difference than I can make now for myself. And when that's done, I think our health care system has something to answer for -- why aren't all kids tested for this? If the antisense therapy pans out, some people will need to push the process of making Lp(a) testing and therapy routine, and I'm going to be one of those people -- I've already got contact with an organization that is poised to push for that, and I can give them money if nothing else. I'll probably die before it all can help me much, but by God I'll live long enough to see it make a difference for someone. For my kids.

Now, why are you trying to drag Pellicle into this? I called Honeybunny out for doing something I disagree with -- Pellicle has done no such thing. If he does, and the situation is similar enough, I'll call him out on it too. I'm not afraid of him, nor do I need to be.

 

[Agian]

I am communicating with a guy who has dropped his Lp(a) from about 136 to 60ish and dropping. In the process he has decreased his LDL to 0.8 and increased his HDL. Here's the kicker, his chest pain has eased and he no longer needs that spray thingy under the tongue. He can do more and is optimistic. It just keeps getting better.

The cardiologist said I am "a very interesting case" who is "beyond the realm of scientific knowledge". This is bullshitese for 'I've got no f*cking idea'. Imagine if normal people expressed themselves this way: 'Your carburettor is beyond the realm of scientific knowledge'. wtf? That lipid specialist you keep mentioning is also a ******.

Niacin, DHEA, Flaxseed, almonds, folate, B12, Atorvastatin, Ezetimibe, oats, Evolocumab, if you can get your hands on it. I take all of the above and have dropped my Lp(a) by 60%. Focus.

 

[cldlhd]

Off topic , sort of, but there have been times when I've found a carburetor beyond the realm of my scientific knowledge. Happy 4th to my fellow Americans.

 

[Agian]

Capt. Obvious, look at what Nocturne quoted: 'beyond the realm of scientific knowledge.' The prick basically asserted 'if I don't know, no one knows' and traumatised a fragile patient. There's stacks of literature on Lp(a). What a nasty, grandiose moron, and what a horrible thing to say to someone who would have obviously been freaking out. Sure, I've called Nocturne names before, but we do care about people here.

 

[cldlhd]

Capt. Obvious, look at what Nocturne quoted: 'beyond the realm of scientific knowledge.' The prick basically asserted 'if I don't know, no one knows' and traumatised a fragile patient. There's stacks of literature on Lp(a). What a nasty, grandiose moron, and what a horrible thing to say to someone who would have obviously been freaking out. Sure, I've called Nocturne names before, but we do care about people here.

Unfortunately there's a lot of that around. People with an unwarranted,elevated opinion of themselves assume if they don't know something nobody does. As long as we're on healthcare our President over here recently did the same, after telling us everyone would have "tremendous healthcare and it'll be a fraction of what it costs now " he has reversed and said " who knew healthcare could be so complicated" . Sounds like he could be related to Nocturnes doc....