It’s been a long year already, and a busy couple of months. As the world turns elsewhere and everywhere around us, our journey through it continues. There is no other way. I don’t know of any other way ...
What the past two months have taught me (again) is that time waits for no one. It moves, and brings news and new developments, both bad and good, new findings, progress, and a few steps back. But regardless of how you label them, your march should continue onward to a new day, maybe in a new world, but hopefully with a renewed perspective. You live and you learn. And this is what these months have been for me: new lessons, more concentrated than usual, but not different than any other timeframe.
On Valentine’s Day, my husband and I traveled to Charlotte, NC to assist The Family Heart Foundation with a screening drive. They are invited or organize on their own these events where people come to learn about why it is important to keep your LDL-C and your Lp(a) in a normal range and to educate how both these can be driven up by genetic factors. They offer free screenings of both tests, or you can take home information to order your free screening kit through their Cholesterol Connect (https://familyheart.org/cholesterol-connect) program. I really enjoyed not only giving back to a foundation that has done so much for people like me, but also chatting with people and seeing how their lights go off when you speak to them about the danger of high cholesterol and the heightened risks high cholesterol brings for heart attacks and strokes. I had a large number of individuals approach me with “heart disease (or stroke) runs in my family, and I wonder what my numbers are?” - I was glad that more and more people do make this connection.
Charlotte, NC - February 14, 2026
A personal bonus gained from this event was that I, too, checked my levels, especially because my cardiologist doesn’t repeat the Lp(a) test, so I was curious to see if it is indeed relatively stable as it is believed. I have seen mine changing over time, and I never got a straight answer as to why that is. Some doctors say it’s because of other diseases, or conditions that might be present at the time of the test, and some others say that some of the medications I am taking for lowering LDL do have some effect on the Lp(a), as well.
In May 2024, my Lp(a) was 102 nmol/ L; this time (February 2026) it came in at 44.63 nmol/L. The normal is up to 100 nmol/L. I used to tell people that my Lp(a) is borderline (slightly) elevated, but now it is perfectly normal, with this test. From what I read online both Repatha and Evkeeza (I take both) have been proven to lower Lp(a), although they are not specifically prescribed for this. I will follow up with my cardiologist, of course, to understand more, but I also know that he presents himself as an LDL specialist, so he might not be familiar with Lp(a)?! That is one thing that I find very confusing - the minute level of specialization of doctors nowadays is overwhelming.
But the cherry on top was when I read the news on March 13, 2026 that the American Heart Association (https://familyheart.org/2026-dyslipidemia-guidelines) released their new guidelines where they emphasize the importance of more often and earlier screenings of Lp(a), in addition to that of LDL-C. When I first heard about this blood test and how high LP(a) can pose an additional risk for heart disease (early 2000s), there was one lab in the whole state of North Carolina that performed the test; my doctor’s office had to send my blood out to get it tested elsewhere and it was not covered by insurance. A sign that progress is happening, despite the world’s best efforts.
On a strictly personal health level, this time has also been a time of progressive discovery and struggles ... We took a trip to Nashville, TN for a few days for my husband’s birthday. We love to be active when we travel - we usually have a limited time to visit any place but we always want to get the most out of that short time. We usually park in a central place and walk all over just to get the feel for a destination (a park, a beach, a city etc). I am currently on four medications for my heart: Atenolol (for tachycardia and arrhythmia), Amlodipine (for high blood pressure), Isosorbide (to relax my arteries which are severely plaqued) and Furosemide (a diuretic, for heart failure). It took months, if not years of trial-and-error regimens to come up with this cocktail that finally works for me - in the sense that it gives me both the relief of symptoms, and also better pulse and blood pressure numbers.
Out of all these drugs, I absolutely hate Furosemide (Lasix) because it interferes the most with my life. You are pretty much tied to a bathroom for at least 4 hours after you take it. When I travel, especially when I am on my feet in the middle of a city with no access to a bathroom for half a day, I tend to skip it. But the Nashville trip proved that I can no longer have this luxury. When I skip it now, I simply cannot breathe. The shortness of breath and the fatigue sets in with a few steps. Forget “walk a mile before the symptoms set in” - there is no time for that ... I muddled through this trip but now I am working on trying to figure out a schedule that I can keep while traveling because stopping the travels is out of the question, at least at this point in my life ... So, this was a lesson for sure.
Right before this trip, I asked my cardiologist to run a Pro-BNP test which measures the severity of heart failure. During his care, the BNP had gone down to 110 during 2024, but it now back up to 629 pg/ml (it is normal up to 190 pg/ml). This very much tracks with how I feel - the fatigue and shortness of breath are signs of heart failure too. He didn’t change my drugs at this time but he did double the amount of Atenolol and Furosemide for a few months, then we’ll see what the tests show and how I feel. I do see improvement from the small change he did in the drugs. The addition of the Isosorbide later last year also has given me relief from my angina (chest pain) symptoms.
Of course, I worry that there is a bigger underlying cause of all these worsening symptoms, but so far, we are planning to continue treating the symptoms, running the tests, and repeating the imaging of major arteries and of the heart, and we’ll go from there, should there be any new findings.
My health investigations continued during this time, as my cardiologist felt like I should check my lungs just to make sure there is no underlying lung condition that would contribute to my shortness of breath. After 2 lung studies of various kinds and visits with two pulmonologists, the verdict was that my lungs are fine and whatever shortness of breath and fatigue I feel is from my heart and most specifically from the fluid build-up from heart disease. They suggested I continue treating the heart and I will see improvements in my symptoms, and this has proven to be mostly true.
For years, also, I have felt increased dizziness and also for years I have tried with more doctors that I care to count to diagnose where this dizziness comes from. In my heart, because I know my body better than anyone, and because I know what FH does to the arteries, and also because I have seen so many people in my family struggling with this condition and watched them over the years navigating new symptoms and the aftermath of new events, I just knew the dizziness must come from some vascular problem. I always feel like my entire body is in a straight jacket (especially with effort) and I just know there is no “give” in my artery walls. I kept begging all the doctors to look at vasculature and see a relation between FH and what it can lead to cause dizziness. But doctors have their own agenda sometimes and they all shrugged and said: no, we need to look at your peripheral circulation (which is, quite amazingly, good), at your balance, and your ear, this is not from your heart or your severe stenosis in your carotids and abdominal arteries. I was not convinced.
About 5 years after I started looking for answers to my dizziness, a kind ear-nose-and-throat doctor said simply - when I finally was sent to her to check my balance one more time and my ear canal, in a last effort to diagnose my dizziness (I cannot call it “vertigo” because times and again many doctors agreed that what I feel is not vertigo; the physical therapist that specialized in treating vertigo also said this is not it) - that she is shocked that with my history of vascular disease no one has done an MRI of my brain yet. But no one indeed has. So, she sent me to get one. This revealed that at some point in the recent past I had a stroke across both hemispheres of my cerebellum (the small brain). She concluded that this could very well have been 5 years ago when I first felt the symptoms and she referred me to a stroke-specialist neurologist which I am due to see in May. So far, the radiologist who read the scan, classified my stroke as a chronic cerebellar stroke, which means there is damage from a previous acute stroke but it is not “active” anymore. This means the scarring is still there but there is no active cause of it at this moment. Among the many symptoms I have had over the years (changes in speech, difficulty remembering words, poor coordination of extremities - which I assumed were a result from my open-heart surgery, or maybe some medications too, like statins, maybe others), dizziness is one of the main symptoms of a cerebellar stroke. And I have my dad’s sister as an example of this, too.
I know a lot of people are shocked and fear for their lives when they are faced with a stroke diagnosis, but for me, it was really a sigh of relief. Since I was 8 and they diagnosed me with FH, I was told I would have both heart events and strokes early in life, I have seen my dad and his dad killed by massive strokes, and many aunts and uncles either maimed or killed by strokes, so it was kind of expected that my time has, too, come - a lot later actually in life than I was originally told. I am sure that the fact that I started medications in my early 20s bought me 20+ years of somewhat a full life (whatever “full” means to me).
So, reading the result of this MRI was somewhat of a relief: I now have a diagnosis that I can follow with a specialist and understand more about it, and what the next steps are.
I remember that all the people touched by strokes in my family worked closely with neurologists, just like I have worked with cardiologists and lipidologists all my life, so this is an expected development of our disease, I would say - or, it is for me. As I always say: knowledge is power and knowing what to call something you feel puts you on the right path to managing it.
Now, I am not sure what other special care the neurologist will suggest to prevent strokes, because from what I know the same guidelines for preventing heart attacks (which I have followed all my life) are also beneficial to preventing strokes. But I would like to monitor my brain closely, just like I do my heart, to understand the pace of disease progression and to try to ensure as much as possible a symptom-free or less-symptom-full life. The stroke, as sad as it sounds, was a welcome step in the right direction. It was freeing in a way.
Back on the cholesterol-level front, my LDL-C keeps going up. Despite the combined therapy I am following (all maximum strengths of Lipitor, Zetia, Repatha, and Exkeeza), my numbers have gone up progressively, a little bit each month, from 58 mg/dl in June 2025 (when I was taking Praluent as my PCSK9, in addition to Lipitor, Zetia and Evkeeza) to 100 mg/dl in March 2026 (I have taken Repatha since July 2025).
I noticed the increasing trend right after I switched to Repatha. The cardiologist also noticed and we tried to get it switched back to Praluent, but my health insurance prefers Repatha and we have applied twice (applied once and then appealed) and we have gotten denied twice. I spoke with the insurance to plead my cause but they said that unless the doctor personally calls and speaks with their medical advisor, there is little chance they will approve the switch back to Praluent. And it’s been taking a long time to get through to the doctor and his office to persuade them to get involved. The only switch in my medications was from Praluent (which I was taking from 2016 until 2025) to Repatha - and the switch also coincided with the increase in numbers ...
I know people who swear by Repatha, and insist that they see better results on it than on Praluent. It is clearly not the same for me. After our attempt in 2025 to switch back to Praluent, the pharmacy on the doctor’s side canceled Repatha altogether from our system for me, so now we will need to reapprove it with Aetna and with the pharmacy which is a little ridiculous, but such are the bureaucratic ways of our medical system. Of course, there is no giving up and there is only one way forward - insist, push, convince, argue, and finally succeed to get on the right path with treatment. This has, unfortunately, been the battle I have waged for 28 years now, since I have come to this country. But all in all, I know nothing good comes without effort and I am incredibly grateful that I have had the opportunity to be here and have good jobs that pay for my health insurance so I can have access to care, albeit delayed and not without strife.
I have encountered many defeats in my life as a patient but one thing I know for sure: I am not one to give up. There are infinite trips I still plan to take and infinite things I still want to be around for, and without my health nothing is possible. Not possible for me nor for anyone around me that I would still like to be here for. So, I try to learn every day what is new with my body, and what is new in the world, so I can adapt and move forward. Forward is the only way.
Much health, everyone! A happy spring!
