How Many Specialists on Your Team?

I am often asked “what specialists do you see with your condition?” - as if this would be a mandate you would make and not let your condition, the symptoms you have lead that decision. The answer I always give is “I can tell you the current specialists I see, but this is because of how the disease progressed for me. Your list might be totally different."

I am not an advocate for loading up on specialists just on principle, because FH is so complex. Instead, I am in favor of knowledge and true empathy when it comes to the medical teams I work with. I think you should look at your numbers, listen to your symptoms, know your history, know your condition, know the science and stay on top of the available treatments and then get to the specialist that has the answers for how you can manage it. 

I am constantly surprised by people who don’t want to know what they have or who know what their children have but decide “not to tell them till they are older.” I think in FH time is health and truly time is life. The earlier you know the most about your condition, the more you know, the better prepared you are to tackle it head-on and ensure you keep better quality in your  life. 

My journey started with my godmother who was a pediatrician. And even before then, you can say that it started with my school nurse, in elementary school. After I collapsed in PE class because of a pain in the right side of my abdomen, she told the teacher who told my mom that I need a pediatrician consultation. After that and after measuring my cholesterol and seeing the LDL at 520 mg/dl, they sent me to endocrinologists for the first couple of years. At the time (1983 in communist Romania), all they did was shrug and deem me as good as dying. They didn’t give me a chance to live longer than my mid-20s. I was 8 at the time. They kept telling me that I am “rare”, one in many millions, they said, and they have no treatment for people like me. 

I didn’t see a cardiologist until I was 19 and in college when my pulse started rushing off the charts - in the 120s right after a nap. She diagnosed me with tachycardia and arrhythmia and prescribed a beta blocker which she said I would take for the rest of my life. She also told me to watch my blood pressure and she did my first echo which showed the first signs of plaque and poor blood flow through my heart arteries. 

After moving to the US, the first established PCP I had insisted that I would be followed by a cardiologist, again, for the rest of my life. This was 1998. I was 23. I have seen a cardiologist ever since. 

Over the years, I also got consultations from at least one more endocrinologist, but also a lipidologist, a cardiac surgeon, several vascular surgeons, and now, recently, I started seeing a neurologist. 

I went to a well-reputed endocrinologist when my cardiologist at the time advised that maybe this one person (who was somewhat of a big name in a well-known research clinic) might have additional advice about my treatment, advice that he, as a (small town) cardiologist, felt like did not have access to. The endocrinologist did have helpful tips for how to manage my medications, what to introduce when and in what amount. He also got me completely in love with Dean Ornish and advised that I should follow the Ornish diet and lifestyle which I still follow today (this was around 1999). Like always: I am not endorsing any particular treatment; I am just mentioning what works and appeals to me.

I went to a lipidologist for much of the same reason: I wanted to explore a deeper understanding of my condition and of the treatments that were becoming available when I didn’t feel like my cardiologist at the time was exploring everything that was possible. The lipidologist did have additional treatment options but he was not covered by the insurance and his fee was steep, so I continued to look for cardiologists that would be able to provide the same treatments. Luckily, this was possible, and now my cardiologist also manages my lipids. 

Being involved with the Family Heart Foundation opened up my eyes to research and specialists that constantly speak about what new therapy is approved or is in research. Access to this information sometimes makes me feel a little bit more ahead of the curve, even more so than some of my own doctors. 

You always have to remember that general-practice doctors treat everyone. And we have a rare disease. As good as a doctor may be, they are trained to treat the average person with the average disease, probably something that they picked up as a result of aging or bad habits and to a lesser extent as a result of a genetic mutation. So, follow the specialist - always, whatever the disease is. Because they have time and curiosity to focus on outliers and nuances. Maybe. If you’re lucky to find those doctors who are. It’s not always a given, as it is often with anything. 

In 2016, I met my cardiac surgeon who performed my open-heart surgery and who continued to see me until his retirement last year (for 9 years, if you’re doing the math). He was crucial in making me understand how to live with my newly reshaped heart and teaching me how sick my body really was (and still is) because of cholesterol damage. In very visual terms, he described the anatomy of my arteries, how PVC-like they are and how close to almost shattering. He explained the risk for aneurysm and aneurysm bursts, he also explained and prepared me for what to watch out for outside of my heart - my carotids, my abdominal aorta branches, the vasculature that is responsible for irrigating my entire body and the most vital organs. I think of him as my complete-anatomy doctor. He truly was a blessing. These consultations led me to start seeing also a vascular surgeon. They do yearly tests to assess the progression of my disease in the arteries in my body. 

Right after my surgery, and because of the conversations I had with both my cardiologist at the time and the cardiac surgeon and because of information I had gathered from The Family Heart Foundation, I looked into genetic testing. I did my first genetic test in 2016 and at the age of 41 I was finally clearly diagnosed with HoFH and not just FH. And not just “dislipidemia”. I continue to take every opportunity to meet with genetic counselors and consultants to understand what is on the horizon for our disease in this area of knowledge. I also meet with them to benefit them. Oftentimes they tell me that they are studying genetic lipid disorders but they have never met someone living with a disease as rare as HoFH to actually know what our lives are. I take the opportunity to teach them in these meetings as much as I take the opportunity to learn from them and their science. 

I met with a neurologist twice now. Once for a nerve study when my cardiologist at the time thought my peripheral disease caused nerve damage in my legs. The neurologist who did the study concluded that there was zero nerve damage in my peripheral nerves and sent me on my way. 

About 4-5 years after that, I met with a second neurologist after an MRI diagnosed that I had a stroke. This was earlier this year. The neurologist, much like the first cardiologist I ever went to, agreed to see me on a regular basis to continue to do annual brain CT scans to observe the progression of my atherosclerosis in the arteries of my brain. We took a baseline CT this year and we will follow up every year. He said everything I am doing to live a heart-healthy life works nicely for a brain-healthy life. He said (which was repetitive for me as I come from “the stroke family” - we have decidedly more strokes in my FH family than heart attacks) that FH puts me at a higher risk for strokes and for this I should be followed by a neurologist just as closely as I am followed by a cardiologist. So, welcome to the team Mr. Neurologist. 

At this time, I am seeing my cardiologist for heart monitoring and lipid management. He is the number one manager of my condition and the state of my heart. I also see a vascular surgeon once a year who monitors my carotids and my abdominal aortic branches which have various degrees of stenosis and dilations (precursors to aneurysms). Now, I also see a neurologist. And this is my “FH Team”, in addition to occasional genetic counseling when available. For now. 

I think it is not always important what specialists you see - but it is important that the ones you do see know your condition intimately and navigate it with you in mind. Each FH case is unique and presents unique challenges and opportunities. You need to be with someone who is curious and knowledgeable at the same time, because this field is developing constantly and our possibilities for treatment and management grow more and more. Someone who listens to you and your case and the development of this disease in your body. Not someone who does everything “by the book”, but everything “right by you, and you alone”. 

I have had to “fire” doctors many times in my “patient career”. There have been doctors that were either unempathetic or completely misinformed. I took the liberty to say “yes, when it comes to me, I do know better than you. The science is there. I know it. I see it. I read. And you don’t have it. And I know my body better than you. Always. So, you’re not going to be my person.” Being in the wrong relationship is always wrong and unhealthy, no matter the reason or the scenario. It hurts both people. So, sometimes you’ll have to move on, maybe drive longer for the right specialist, maybe move to a different town or even state or, in my case, country, to get the proper treatment, but in the end it is worth it.  

Stay alert. Stay informed. Stay curious and never take a break from this. Just like your life, your health is a full time job. This is your health, your life, the quality of your every day and the memories you are here to build. This is precious cargo. Care for it gently and passionately!

Good luck in your journeys. 

Latest numbers, as of June 2026

Never Give Up - Back to Praluent

I am contemplating launching a new label for some of the blogs, and I should call that new category “never give up”. As I mentioned many times before, always, and I mean always, be prepared to advocate for yourself. I can never stress this enough. 

If there is just one message I can get across to those who are just now learning to navigate FH and its convoluted journey through medicine, therapies and the right specialists, is this: it will take time and patience, and more than anything, it will take effort, to learn and become knowledgeable. And when you get there, put that to good use to advocate for yourself. Never rely on anyone else, no matter how promising their commitment seems to be. 

I know it may seem self-serving, egotistical and self-centered to do so, but at the end of the day, this is about you, your life, your health, your family, your support system. You don’t want to give up because of doctors who may or may not know enough about your condition, because of bureaucracy, or because of neglect from so many people involved in the process. This is your battle. It can get lonely, but you’ll learn in the process that all you have to do is know your condition, know the facts, and speak up. And I assure you that there will be people who will, eventually, listen and help. 

I also need to preface this blog by reminding everyone that I do not endorse any medications over any others. The names of the medications I am referring to in my blogs are what works for me. I know many people who have the same condition (HoFH) and are using a different therapy combination. Just like there are no two bodies alike, there are no two conditions identical, nor two treatments identical.

So, please read this with this in mind. The names are given here just to exemplify my own journey. They do not endorse any of the medicines I am referring to, nor their manufacturers. 

To remind you, close to a year ago (https://livingwithfh.blogspot.com/2025/07/the-end-of-era-good-bye-praluent-hello.html), in the middle of the year, with no changes to my insurance whatsoever, my insurance company decided to stop paying for my PCSK9 inhibitor injection drug (Praluent) and replaced it with Repatha, which they said, they will fully cover. I had been on Praluent since 2016 (9 years) without any issues. My cholesterol dropped by about 40% which was the biggest drop by one medication alone. I was impressed. 

It was like saying “goodbye” to a friend when I had to stop the Praluent and order the new drug. I wanted to cry. Plus, as many of us who are on drugs for the long haul with a life-long condition know, you always wonder what will be the side effects with the new drug? Will I be able to tolerate it? There is always some undesired effect from a drug that you have to either make a decision you can live with or you simply cannot take it. So, I was nervous. I also am extremely incredulous of people to promise you that “two medications are identical, so you can switch to the other one easily.” I personally have not found this to be true at all. There is always a compromise you’re making.

I have tolerated Repatha well but there were some differences that I could notice, especially at the injection site. But tolerable. After three and even six months on Repatha, however, my LDL numbers were higher than my levels while on Praluent. With Praluent, my LDL dipped for the first time in my life under 70 mg/dl which was the target for LDL levels for people with increased risk. Since then, the target has moved to 55 mg/dl for people like me, with very high risk of cardiovascular disease. My levels have never been as low as all that, even with Praluent (and all the other therapies combined). But it was in the 70s range, or lower than 70, 7 times while on Praluent, while it was in the 70s only twice , and never below 70 mg/dl with Repatha. 

So, after 5 months of Repatha I spoke to my cardiologist to see whether we can convince the insurance to let me switch to the Praluent again since the numbers were visibly better. He agreed. He only can request such a change. No amount of advocating to the insurance coming from me would ever convince them. They needed to hear my specialist doctor (not a PCP) reach out and explain the medical need for this. So, he contacted them in November last year with what he thought was a compelling message about switching back to Praluent. 

And his request was denied. I received a letter from my insurance in the mail in November, never explaining why, but just communicating the decision. I called the doctor again in December (because like you already know about me, I don’t quit that easily) and I asked again: can we please appeal this decision. He said, sure, we’ll appeal. (Again, this request came from me, he would have stopped at the denial). And his office did appeal. 

In December, I again, received a letter from the insurance saying “your appeal was denied”. I crossed my arms and pouted for a while. The letter did say I have the right to a second appeal for 6 months since the denial of this one, but I told myself I’ll try again after The Holidays. 

I had a call with my nurse advocate from my insurance earlier this year and I gave her my LDL-C levels and asked her: “do you think I have a case to keep pushing for a switch? My numbers are better on Praluent, my doctor said the goal for all these drugs is to keep the LDL-C levels as low as possible, why can they not see this and just approve the switch? Repatha is obviously not that good for me. And there is an alternative that they have paid for years.” She agreed that looking at the numbers, I do have a case to push for another appeal, but that she encourages me not the appeal alone. To get the cardiologist to call (not write to) the insurance and speak with their medical advisor and explain the medical necessity for such a switch. 

Since January I have been trying to email my cardiologist (several times) to make him understand that he would need to call and speak with someone or else we’ll keep getting denied. I got silence. Weeks went by, my appeal clock was ticking (I was only allowed to appeal until early June), and nothing, no answer from the doctor. 

Well, as my luck would have it, his office messed up some other drugs (somewhat unrelated to the PCSK9 inhibitors) which prompted me to escalate those problems to his clinical pharmacist (since they were drug related) who is the person who actually gets the prior-authorization approvals for all my specialty drugs in the first place (and I thought he would take my requests for appeals to her, but ... maybe not?). She was not aware that I was trying to get my PCSK9 inhibitor switched. The pharmacist and I talked for a while, we looked over my levels (again) in late March and she promised she would appeal a second time and she also agreed that there is a clear case here for better therapy, so we should continue trying. 

And on May 8, I got an email from her and from my insurance nurse advocate to tell me that the insurance did approve the second appeal and they are allowing me to take Praluent for another year. The prescription expires in May 2027, but at that time, we would have to go through the same process again to get it pre-authorized and approved. Next time, I will skip the cardiologist altogether and I will go directly to the pharmacist. 

So, now I am back to my old trusty drug and hoping it’ll perform as well as in the past. 

First Praluent injection in almost a year. High hopes.

Of course, with all this disruption and rollercoaster drug-switchin’ my levels are still higher than they should be, but it takes up to three months for Praluent to work at its full efficiency and I have only taken one injection so far. 

It took, all in all, 7 months to get this switched. Several years ago, when I was advocating to take additional therapy with a newly-approved ANGPTL3 inhibitor infusion, it took me 3 years and a change of medical systems and cardiologists to finally benefit from that therapy. But we did it! (the new doctor and me). 

As they often say “time is plaque” when it comes to “bad” cholesterol and these delays and waits are one of the most burdensome roadblocks in our healthcare and well-being. But I cannot afford to give up. Not ever. Not while I know there is a solution. Time is of the utmost essence here. 

I hope this entry helps, not to scare you, but to give you an example of how this battle is real but how success is also possible. Just stay informed, alert, and state your case. Always. 

The best of luck in your journeys and much, much health! 

Latest numbers (click the picture for a larger view)

Stroke Diagnosis, Increasing Numbers, New Research, as Life Moves on ...

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).

My latest numbers - March 2026

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! 

 

Counting My Blessings, After 10 Years ...

The menu:

• Aortic valve replacement with an On-X mechanical valve
• Ascending aorta and aortic root replacement with a Dacron graft
• Aortic arch endarterectomy and aneurysm repair
• Endarterectomy and bypass grafts for 4 coronary arteries, including the left main coronary artery, the left anterior descending (the LAD, or widow-maker) and the circumflex arteries. 

Additional mandatory procedure: 

• Circulatory arrest (look it up!) 

The date:

• February 11, 2016

The duration: 

• 13 hours

The place: 

• Provo, Utah - the Utah Valley Regional Hospital

The result:

At least 10 more years on this side of the dirt. 

Those who know me well will tell you that I don’t lie. This is not because of any moral high-ground prerogative that I have set for myself. The reason for this is simple, to me: I have been told since I was 8 years old that I will die young. And I have never wanted to go before every single person I ever met knows exactly what I think about them, or about this world. I want to go in truth and leave people with the real me. 

Ever since I was 8 years of age and my own mother read my cholesterol in her lab and discovered my FH diagnosis, I have been given more expiration dates that I can count. 

First, I was told that I would probably not make it out of my teens. With sky-high cholesterol and no treatment available, this was the only outcome. Then, it was that I would not make it past 25. And then, because I did make it past 25 but I moved to America where people are afraid to make predictions so you won’t sue them, they stopped giving me an expiration date, but being used to moving the target, I kept giving myself one. 

From one health event to another, I made it to 40, when I had my open-heart surgery that you read about above. And that made me stop and think: is this it? Will this scary, big surgery kill me? Is this now the end? What did I have to show for myself for the first 40 years of my life? And was it going to be all over? Will I never get to see my nephews grow up and graduate and marry and have children, or what will come after this big precipice to allow me to finish all I am planning to do here, on Earth? 

I told my husband the night before my surgery that I just feel it in my heart, and in my bones that I would come out of the surgery and I have a lot more life to live after that. I felt that God had put me on this planet to accomplish a lot more than I did in those 40 years. 

On February 11, 2016, I had no idea what February 12 would bring me, I had no idea what kind of body I was going to be left with, but I knew my heart would continue to beat ... Don’t ask me why and how I knew that. I just did. It was  a force bigger than me ... And a lot like faith: you had to just kind of believe it was true, as you could not find solid proof for it. 

I made it out of that scary 13-hour surgery, so I crushed another expire date. My surgeon promised right after surgery that “it was going to be up and at ‘em from then on out”. I was mortified. I could not sit up the day after the surgery, I could not eat and my legs were made of jell-o. It was not going to be “up”, I knew that for sure. But “at ‘em”? No way, no how. 

But I learned quickly and I have been learning all these years that he was right. I have learned that there is something inside me, or something from outside of me, or both that gives me strength and patiently puts one of my feet in front of the other for me, and every day, in baby steps, I move on. 

10 years later now ... and I still wonder sometimes: what will eventually kill me? 

I have had many scares during this time - many scares that made me go “uh-oh. What if this is it? What if this is the end?” And yet, this invisible strength and force heals me and keeps me breathing. Keeps me ticking. Keeps me here. 

There has been a lot of fear. A lot of emotions and scared moments: 

The first time I seriously cut my finger right after surgery, thinking I would bleed out (from blood thinners), I thought it might be over. 

The first time that I had to go to ER because my heart was beating erratically, I was so dizzy I could not stand up from a chair (at work), and my blood pressure was very low. At the ER, they gave me a bag of potato chips to elevate it. Honest to goodness, true story. 

The second time I went to the ER a year later because I had some sort of chest pressure with a cough and the Urgent Care doctor was too afraid to weigh in on it because, you know ... you’re a heart patient, it needs to be investigated further. I cannot ever have just a “normal cold” or something ... If I have something remotely related to my chest, doctors step away and call cardio for a consult, or an echo, or a CT! 

The one time I fell literally on my butt on a jetty at Fort Fisher, on the North Carolina coast, on sharp, rocky asphalt mixed in with seashells that cut me open in 1000 places, full of algae and muck, it ripped my thigh wide open, scraped raw and thought for sure some flesh-eating bacteria will get into my blood stream and eat around my mechanical valve and that’ll be the end of my heart and of me, for sure. I watched my symptoms like a hawk for a couple of weeks, because I was sure something poisoned me through that massive open-wound. It was a good thing it happened during the Covid years and I had my car full of sanitizers, alcohol bottles and disinfectants - I poured everything I had on my leg to make it back home to some gauze 2 and half hours later. 

The Covid years were absolutely unbearable! Every headline placed me at the top of the risk-scale for severe Covid and death. We stayed sheltered and masked for way longer than needed, probably, (I still do mask in certain places) because I thought this will surely kill me. My heart won’t be able to handle it. 

But I lived through 3 bouts of Covid and I have been incredibly lucky to have no heart side-effects (that I can tell or that anyone can tell yet) from it. Just a chronic cough that no one can explain, but everyone seems to point at Covid (of course) to be the cause of it. 

In the past few years, I have been diagnosed with heart failure. All the damage that very high cholesterol has done to my arteries is finally catching up with me. I have accumulated more discomfort, more symptoms and consequentially more drugs to treat this. But I am moving on and managing it, insisting to have a full life and live like I still have another 50 years ahead of me. Because I might. Every day is a challenge and every doctor’s visit is a struggle. But it is all worth it and more! 

Two caths and three cardiologists later (from my surgery), I still learn something new about my heart every single year ... But I am not gone. I am still here. Still believing and truly feeling that it’s not my time yet. Not even close. 

I look back and I see so many challenges, so many crooked roads, so many bumps ...

I have learned how to live with an ever-changing heart. My heart is still a mystery to me but what I know is that it is a living, moving, living organism that changes and evolves - with disease, with age, with stress - it changes, and morphs into a new organ almost daily ... I have learned to listen to it, and although I still don’t know what exactly it’s saying, I know better when it’s not well and is asking me for help ... 

I have learned so many more things than I ever knew before the surgery about how else it can break - with every new symptom (erratic heart beats, high blood pressure, shortness of breath, exhaustion like I have never felt before, palpitations), I learned that one more thing might add to my heart condition. 

I am happy that I have lived long enough to see efficient treatment for my Homozygous FH. My cholesterol is the lowest it’s ever been now and from what everyone tells me, all the scientists and doctors, there is not much more cholesterol adding on to my arteries. But my heart is still seeing new symptoms from 40+ years of this white fatty mess clogging up my arteries. Because the damage has been so extensive, there is no immediate reversal of my heart disease, unfortunately. But it is not who I am. I am just a person with heart disease. I am not the disease.  

A heart patient will always be a heart patient, they say, but in my world, a heart warrior and guardian will always be a heart warrior and guardian ... So, we fight, and we stay vigilant. It’s a full time job that we get better at by doing ... 

I often wonder: have I made these 10 years count? I am grateful to my incredible, gutsy surgeon for doing so much to not only save me then from dying but save me again, and again, every year after that for building strength into my heart and arteries to last me ... well ... my lifetime, such as it is ... But have I made his efforts count? Have I made this time count for me, for the world, for those who matter most? 

I run through my head often all the many things that happened after that day, 10 years ago, and take toll. 

I have moved across the country again and also driven myself across that country. All 2000+ miles of it ... I have taken road trips all the way into Canada and seen two more continents I never saw before. 

I have been here for my family for all the milestones - my nephews graduating various school levels, even high-school, getting girlfriends, learning how to drive; my sister going back to school, I have been here to see my sister become an artist, and I have finally had a career as a writer - my life-long and childhood dream. I loved pens before I knew what they do. 

I have been here to celebrate my dad’s 70th birthday. I have been here through his passing and my entire family’s completely falling apart while trying to cope with. God sees what we don’t, and He knows I have more strength to share with others who don’t  in times like these … I am glad I did.

I have been here for my mom’s rapid transformation into the shadow of who she was before, when her best friend, her lover, her everything left her alone and unconsoled. I have been here for all her pain and all her estrangement and all the losses ... I felt her pain just as hard, my heart only knows how hard, but I have felt glad that I was able to be here, every step of the way. I would not wish it any other way. 

One bright shining light in my journey has been that I have been given the chance to advocate for people like me in these past 10 years. I have humbly become part of The Family Heart Foundation’s family of ambassadors and I have met and made friends with people like me (I knew no one like me before my surgery, other than my own family members) while sharing my story with so many others. I hope I helped at least one person ... 

I have published articles about my American life in a hometown magazine back in Romania, sharing the cultural differences and surprising similarities between my two worlds ... I have learned through this that I have so much more to say. 

I have been here to see my sister turn 40, mother in law turn 80 and my husband turn 50. I have been here, next to my husband, for all the job losses and friend losses and friend gains, too, such as they are ... We bought a new house, we found new doctors, we coped with new challenges, together - and my heart is still ticking ... 

The crowning personal (or should I say selfish) accomplishment, I think, besides just still being able to breathe and live the life I want to live, is having been to Africa ... This might not be something I shared with the world, per se (although it did change who I am as a person and how and what I share with the world), but it was a private accomplishment that transformed me more than anything else before. 

You hear so many quotes about how traveling to Africa is a reset for your world and that is only just an understatement, only scratching the surface ... Everyone should go there at least once to get in touch with who we truly are at the core of our being. When civilization and complications are stripped, we remain as we are - pure and infinite ... There is so much richness to replenish in ourselves in this very journey! 

The day I turned 50 opened up with the most spectacular sunrise of my life, under the African sky - and this is when I told myself: I’ll stop counting and stop giving myself aleatory deadlines ... The end is not mine to know. And as I did 10 years ago, I truly feel it in my bones that I still am called to be on this side of the dirt for a heck of a lot longer ... Things are not settled yet, and my heart is not done telling its story. 

Over the years, I have been pushing boundaries, despite all the physical obstacles ... I keep telling myself: if this life is so short, I wanna do what I wanna do while I can still do it. Altitude bothers my heart, something awful - so bad, that we had to move back to sea level. But I love the top of a mountain, so I push. When I climbed (by gondola) the 11,000 ft Hidden Peak at the Snowbird Resort in Utah after my surgery I truly felt like I conquered the world. 

I climbed on my own two feet The Ensign Peak in Salt Lake shortly after my surgery ... It is only 5,400 ft, but even 2,000 ft bothers me ... but I did it, slow and steady - best view of Salt Lake City! I got dropped in the middle of the African Bush with not so much as a human establishment anywhere to be seen from the plane, for hundreds and hundreds of miles, much less a hospital, or emergency room, or even the specter of a doctor. I did it - and I felt free and unbelievably lucky! And I cannot wait for more ... Little by little, I find that I am not thinking so much of death anymore. Just life. Death is a given. Life, we have to work at it. 

Today, 10 years later (happy birthday to my brother in law whose birthday is today and whose day I will forever share as my rebirth; still sorry I ruined a birthday for you 10 year ago!), I still have no idea what’s ahead, I still have (on paper) a very sick heart, but I am more convinced of our resilience and strength and ability to push through barriers, boundaries, and bumps than ever before ... I am convinced of our sheer stubbornness to live ... I am firmly planning on living. Definitely not planning on dying. 

My mom always says “dying is not that easy.” And she is right ... I am nowhere near ready for that ... 

I never thought I'd call any man an "angel" but here are the two that are responsible for my life: my wonderful surgeon and my one-in-a-trillion husband. Thank you to both!