New, confused, scared, anxious, help

[Nocturne]

Hey noctrune, welcome back.

How's your Lp(a) doing? I have read and heard some positive things about options for actually dealing with that.

Have you had valve surgery yet? You'll be pleased to know I decided to go of antibiotics near the end of last year. So after 10 years lets see if I am cured of that bacteria or I go in for another round of tough love.

I hope you continue to post in your happy bouyant and positive ways or yore.

Best Wishes

PS have you read of these things? (I expect you're well aware by now)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8822604/
Among patients with coronary heart disease receiving moderate to intensive statin therapy (eg, simvastatin 40–80 mg/d or atorvastatin 80 mg/d), approximately 50% to 60% achieve LDL-C levels <70 mg/dL (2,5). Of these, approximately 30% have LDL-C levels of 60 to 70 mg/dL (5). Whether patients with LDL-C levels close to 70 mg/dL on statin treatment derive incremental benefit from further lipid-lowering therapy is therefore a question that is frequently encountered in clinical practice.

Inhibitors of proprotein convertase subtilisin/kexin type 9 (PCSK9) produce large reductions of LDL-C as monotherapy or when added to statins. An additional effect of PCSK9 inhibitors is to reduce lipoprotein(a) concentration by 20% to 25% (3,4). Lipoprotein(a) is a type of low-density lipoprotein particle whose concentration is determined primarily genetically. It is believed to have atherogenic, proinflammatory, and prothrombotic properties (6). Epidemiologic and genetic studies associate lipoprotein(a) concentration with the risk for incident coronary, peripheral artery, and cerebrovascular disease (7–9).

Lp(a) is genetic and doesn’t budge for much. Mine, you may remember, is 13 times normal, triple the “extremely high risk” level.
Yeah, meds that lower it are “right around the corner” - just like they have been for the last decade or so. I’ll believe it when I’m on them. I was, for what it’s worth, recently sought out by a company that is trying to get them past the FDA for an interview, as I was on a list of people with astronomically high Lp(a) levels. Not that I qualify to participate in their trials; no heart attack, no trial. The interviewer appreciated the irony of someone hoping for a mild heart attack so they could get in on a trial of their life saving med. Quite the knee slapper, eh?
Progressed to moderate stenosis this year. No replacement yet. Taking a sabbatical next year to travel with my wife; not seeing the point in working straight through to a retirement I may not live to enjoy.
Good luck with your bacteria.

 

[Chuck C]

Lp(a) is genetic and doesn’t budge for much. Mine, you may remember, is 13 times normal, triple the “extremely high risk” level.

PCSK9-Inhibitors have been approved by the FDA. They lower Lp(a) significantly, usually 20 to 45%.

Like you, I have sky high Lp(a). Prior to going on Repatha (PCSK9-I) I was at 243 nmol/L. Repatha dropped my Lp(a) 47%, down to 128 nmol/L. The hazard ratio for heart events is much lower at my current level.

It is a bit tricky to get approved for it, as it is FDA approved for lowering LDL cholesterol. The fact that it lowers Lp(a) significantly is a side benefit. Having high Lp(a), one of the key strategies to reduse risk is to bring LDL very low. My cardiologist likes my LDL to be under 50 mg/dl. The nice thing about Repatha is that it lowers LDL drastically, more than statins. Repatha brought my LDL down to 58. Added a mild statin to get it down to 37.

Because Repatha is approved for LDL lowering, you might need your doctor to work with you to get approved by insurance. Might require a bit of finesse, but many with high Lp(a) are now going on Repatha.

There truly are some amazing theraputics on the horizon. Not pie in the sky.

The Pelacarsen Lp(a) HORIZON trial is in the final phase- Phase III. Completion and approval is expected in 2025. Of course, approval is not certain, but Phase II went very well with Lp(a) reduction of about 70% at the higher dosage.

Amgen is right on the heels of Novartis with a competing therapeutic which has been found to lower Lp(a) by 95%. Links below.

https://www.prnewswire.com/news-rel...vartis for,, an atherogenic, pro-inflammatory
https://www.novartis.com/news/media...living-elevated-levels-inherited-lipoproteina
https://www.tctmd.com/news/pelacarsen-targets-lpa-little-impact-ldl-cholesterol
The Amgen study:

https://pharmaphorum.com/news/chasing-novartis-amgen-ushers-lpa-drug-into-phase-3

 

[pellicle]

No replacement yet. Taking a sabbatical next year to travel with my wife;

sounds good ... I hope you enjoy the trip

 

[sharky7]

This is a very, very late reply. One that I put off because I didn't like what I was told from those men with degrees.
I found out I have mixed mitral valve disease - both severe regurgitation and severe stenosis.
Because of the AVM, my only option is TMVR.
But I've been deemed too much of a risk factor even for that. Which I do understand.

Not posting this to be a downer.
On the contrary, I am living every day to its fullest.
Like everybody should.
But don't.
Cos they think there's always tomorrow.

I hope for many, many more tomorrows for you all!
Cheers!

i also reread a few times what you said, and i think that I understand, in part of what your trying to find out with anyone connected to helping you, being the heart Dr,, or the SURGEON....what you would need to find out how this goes. does doing the procedure out way the risk. If TMVR is your only option, then how can it be, and also at the same time, "too much of a risk"! And for our information, please inform us of who said that, name and all details that you have on that person! AND how did you come to the conclusion that, TMVR was your only option? Was it the same doctor, or what?
And I would add that I had that in 2015/JUNE, DOB/may-1953! so you and I are about the same age. And I would be the first to admit, I aint no where as in good shape as you are. I am not big and fat or anything, I dont drink nor smoke but that is about it, i am about 5'10" and 200lbs!
Just incase ya wondering, got mine done at mount sinai on MIAMI-BEACH in South Florida.
severe stenosis
{{{"TMVR is a minimally invasive structural heart disease treatment to replace a damaged mitral valve without open-heart surgery. A flexible, hollow tube (catheter) is inserted through a blood vessel to reach the heart and replace the mitral valve."}}}}
I now own a St. Jude Mitral Valve. And the did it, TMVR which is not open heart, it is thru the right side with a very small scar, I think. [I will post my goole results of what that is, and I do believe there is only one minimal invasive procedure that they do and it is this one I had, heck its been more then five years going back now!] AND I do not have severe stenosis, perhaps this is why they claim that TMVR is too much of a risk for you, and decline in even considering it? Could that be?
I know that I am getting in here late, I just saw this thread, and started reading everything, everyone said, I would like to add a few more things about what you may ask and try to find out when asking your questions, but surely to those that are suppose to know! And at least try to have a good bedside manner, But I would tend to agree with some that say, depends on where your working in the medical field, to what type of bedside manner they expect of you, and HUMANS tend to be lazy sometimes in all fields, and would not go any higher then those standards that are demanded of them, sad but at least of that is true, again, I think!
I hope that at least some of that help, and I am sure one of my friends will give me the honor of replying to it....lol but be nice this dude is 70 this year!

 

[Rebecca]

I am lucky that my mom is 89 and still alive. Over the years she has had orthopedic surgeon tell her that she needed surgery on both ankles and knees. Rheumatoid Arthritis doctor I think we need to try using braces at the age of 80 I don't think surgery is a good idea. A hospital cardiologist we cannot do a stent in the area that needs one you will need open heart surgery. My mom see her cardiologist yes I can do a stent it will not be easy but it is doable. Many years later my mom does need to have by pass surgery. We were going have her travel out of state to have top doctor do surgery. We find out her small town doctor was the one that help develop by pass surgery on a beating heart. My mom had surgery in her small town on a beating heart. Just because one doctor tells you are not a candidate for surgery another doctor may be able to do the surgery with a good out come. I had my plan heart valve replacement just two weeks after my mom had her surgery. If we had lived in the same area we could of went to cardio rehab together. Today is the first day of the rest of your life. Get a 2nd opinion from a well known heart center.