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!

With All Due Respect ...

Don’t get me wrong. I absolutely and whole-heartedly respect the medical profession. Simply because I am convinced I would not be here today if it had not been for some incredibly talented, intelligent and ultimately extremely gutsy doctors, nurses, and pharmacists that took the time to learn and educate me about a rare disease that was only known in a few elite circles of the medical literati. I want to make this clear, before I go on my rant below ... 

But there are many times, a lot more than I would like to count, a lot more than I would expect as a patient struggling with a complex disease that cause more disease every year,  where I do have no choice but to not trust my medical professionals and it’s not because of me. It’s either because of their ignorance, unpreparedness, or because of the insane, profit-driven medical world of today that simply does not allow them to allot the proper amount of time for me, or to stay on top of their research to know what treatment they should have me follow. 

I landed on this article (https://www.nbcnews.com/tech/misinformation/doctors-say-medical-misinformation-gotten-worse-survey-finds-rcna225804)  a few months ago and I knew I was going to have something to say about it, but it didn’t come outta me until after a recent visit to my cardiologist and another one to my new vascular surgeon. 

The article talks about a survey that a nonprofit organization ran amongst doctors that found out things like “doctors said they encountered patients influenced by misinformation or disinformation a moderate amount or a great deal of the time over the past year”, and “doctors encounter pseudoscience in their everyday practice of medicine, and it indicates how their jobs are changing in response to a new information environment in which distorted health claims spread easily online”. It continues to state that due to the patients’ misinformation, the doctors feel that “it’s frustrating. It’s demoralizing, it cuts to the core of what motivates most physicians, and that’s a desire to help people in the most fundamental of ways. And in a way, it’s a repudiation of all the different things that lead people to practice medicine.”

Yet another doctor not related to the survey admits that “it’s too much to expect a physician or nurse practitioner, for example, to address complex, deep-seated beliefs in an eight-to-twelve minute consult”, and later admits that “sadly, sometimes our colleagues fall for the falsehoods, too”. This is all I will quote from the article. I am sure you can read it for yourself and form an opinion. 

Bluntly, this is what I would have to say, and I only speak from experience: doctors should not at all be surprised or feel “demoralized” or “frustrated” that people turn to social media or Google for medical information, because they cannot address all the patients’ concerns in the extremely limited amount of time offered to them for a consult by a system that enforces quantity over quality in the pursuit of the bigger profit. 

I have had cardiologists that admitted that they see 23 patients a day. In case you are doing math, this means about 20 minutes per patient, if the doctor takes no bio or lunch breaks, no breaks for meetings, email answering, or additional calls for referrals and additional consultation, during an 8 hour work day. This simply is not possible, in other words. 

I have a rare disease with an extremely complex set of diagnoses: I have homozygous FH, coronary artery disease, tachycardia, arrhythmia, atherosclerosis, a mechanical aortic valve, heart failure, diastolic dysfunction, carotid stenosis, mesenteric and celiac ischemia, fatty liver and gall bladder tumefactive sludge, just to list the main ones. There is no time in the whole 8-hour day for a doctor to advise me on my symptoms, my course of treatment, and my complications from all these. Not to mention there is not one specialist I need, but several.

I have no choice but to go to Google and ask about my concerns, or even the interactions between all my medications that the various specialists throw at me. 

To complicate the landscape, doctors are so incredibly specialized nowadays that they cannot see (or refuse to see to save time) what the other specialists do. They often operate in a complete void.

Very often in my career as a patient, I have found (from my own research) that a doctor would prescribe something that would either hurt another part of my body already affected by disease, or conflict with another medication that another specialist prescribed for another affliction. None of my doctors, even the good ones, look outside their own boxes. 

But what is worse, the one thing that made me go “oh, please, docs, cry me a river” when I read this article was something more severe and something that has been bugging me all my adult life. The one thing that makes me personally turn to online information (which I agree is not always reliable but it at least gives you the illusion that you get some answers) is the fact that I cannot find the answers in my own doctors’ offices. 

So, the doctors can say all they want (at least those surveyed) that they are  frustrated and demoralized because people walk in with bad information, but the truth is - we, the patients, sometimes have no choice. Last week, I walked into my cardiologists office and after the recent tests that he did - a holter monitor that I wore for 2 weeks, and a referral to a vascular surgeon that yielded results from an abdominal CT that showed a worsening of my mesenteric and celiac arteries, in addition to a history of worsening blood pressure and pulse measurements, worsening shortness of breath and angina - his question to me was: “All right, what kind of imaging tests are you interested in pursuing next?”. 

If I had not had 42 years of experience with medical professionals, I would have fallen out of my chair. But this was a too-common question that I have unfortunately heard from multiple physicians. 

I am not an ageist in the least - I have had young medical professionals that are up on the newest technologies which I can appreciate, and I have had older ones that have a more wholistic approach that I love, and are into the business of actually touching the patient to find symptoms and listen to the body (the heart, just like the lungs tells you things when you just listen to it; but few docs do it anymore). This particular cardiologist was an older gentleman, which might incline someone to think that in addition to many years of medical education he had experience on his side, so he should know the next steps for the course of my treatments. He deferred it to me. 

So, where is a patient in my case supposed to turn for answers? How am I supposed to know what imaging tests would be the most appropriate for a correct and reliable diagnosis? The only place I have is somewhere online and who can verify the accuracy of those results?

I deferred it to him by saying “the educated, wise kid in this room is you, doc, so I defer it to you to know what test to do next that would give you the most accurate picture of what is going on so we can come up with the best plan for treatment.” 

He decided against more tests and instead he did what many of my doctors do - threw more pills at the problems ... I’ll try them and see where this will lead ... We'll reconvene in May and reassess the symptoms and go from there. Maybe. If he remembers what my complaints were to begin with and what tests he has done so far. 

It’s all trial and error. Unless I stumble upon a thing online that might sound pertinent and then I am sure I can pitch it to him and he’ll order it ... reliable, accurate or not ... Maybe?! 

Days after this appointment, I met with the new vascular surgeon who had ordered a peripheral artery study (which always comes out perfectly fine and she should have seen the results of the previous one in my chart, because my cardiologist in the same practice did an identical one just 2 years ago and it came out perfectly normal, but people don’t read anymore, so we’re forced to repeat tests 10,000 times if needed - more inconvenience for us, more time off from our lives and more money for them) and an abdominal ultrasound - which, to my uneducated brain is a lesser-accuracy test to an abdominal CT with contrast that the same cardiologist in the same practice ordered only 5 months before. The results for the ultrasound were almost identical to the CT done 5 months prior, and they showed a worsening in my celiac and mesenteric stenoses and an increased post-stenosis dilation than the year before.

When I went in to meet my new vascular surgeon and go over the results, she acknowledged my disease but she brushed it off with the (in my humble opinion) ignorant statement of “well, yes, you have disease, you have HoFH, so this is expected, but I look at you and you look perfectly healthy. So there is no immediate action.” 

I just about came unglued, as I always do when I hear this statement because HoFH as well as many heart conditions are invisible, but history shows us, not any less deadly than many other extremely acute afflictions. And I told her with all the honesty, tact and well-managed frustration that I could muster: “This is where you lose me, doc! This is where I have to tell you: I do believe my disease is not unimportant or un-worrisome, just because I manage to look good. This is not a professional assessment, with all due respect.” 

And again: I know what I saw in the test findings. I know that things like “stenosis” and “dilation” are bad, in the context of atherosclerosis, arterial disease, stenoses, HoFH. And yes, I know this because I Googled it! And not only that - I know this because I saw what it did to many people in my own family who also “looked good”. They “looked good” until they had a stroke that left them physically changed, impaired or dead. 

But where do I find the correct interpretation of results? Who can please connect the dots between my constantly worsening symptoms and the findings in my new tests, when the doctor simply says “yep, tests  - bad; you - look good. Go home and live your life”?! Where can I find objectivity and education when the doctors blow me off?! 

Naturally, I turn online because that is a convenient resource that at least pretends to know it all! But where can we, the patients, find the authority who can parse through the information for us, and educate us not only about a disease in general but about our particular case of the disease, so we can feel like we have a handle on it and can live healthy and successful lives? 

And one more thing: I have had doctors, doctors with a reputation that preceded them, that have pulled up Google in their office with me present to see “what else they need to do next” for me. 

I am guessing with the explosion of AI nowadays, things will only get dire. I very often use Google primarily (which has always been “powered by AI” but now it needs to be branded this way) and quite often I am mindful of the findings. Because oftentimes, I have no choice. 

So, what gives, I ask you?! We insult them if we go online and come in with false information that our limited knowledge and desperation cannot parse through, but they insult us by dismissing our afflictions or deferring us to make decisions when they should be the ones with the knowledge?! 

What gives?!