“Heart Sisters”

Heart disease is not something to muck about with ... Sometimes, you live with it for a very long time, and sometimes you have no idea you have it until it’s too late ... The silent killer as they say ... 

I knew I would have heart disease one day because of my FH diagnosis at the age of 8, and because my doctors were savvy enough to know the potential damage that the cholesterol was causing my arteries would eventually end me in the operating room. If I was lucky. 

Because I knew the risk, I could watch my heart over time and see the progress of the disease before it was too late to do anything about it, and luckily, before it caused an event like a heart attack or cardiac stop ... 

I met many heart patients on my journey with FH and heart disease. I have met so many special women, especially, that have gone through so much more than me. I feel connected through some invisible thread with all of them. We are all different and all alike in some ways. And in many ways, we get each other at a deeper level. 

The one thing that you’ll learn when you’re an open-heart surgery patient is that no two journeys are alike with this disease and with surgery. We all have different thresholds of pain, we all have slightly different surgeries, and we all have different anatomys. Two heart-valve surgeries are never the same: mechanical valve vs bio valve; aortic valve vs mitral valve; one valve surgery, vs multiple valve surgeries; valve replacement vs valve repair; bypass surgery vs endarterectomy; stent implantation vs bypass surgery; aneurysm repair vs aorta transplant ... 

Surgeries can last 2-3 hours or 10-13 hours. You can come in and out of anesthesia or you can feel like you took the longest nap of your life and not remember a thing. Some people see “a bright light” while they are on the heart pump machine, others see nothing. Just peaceful sleeping ... Some feel like they left their bodies and are looking down on their surgeons from the ceiling, other patients think this is all imagination and too many horror movies watched... 

How we heal, how fast and how well, and what life-long side effects we are left with (because there will always be those) are all different from one person to another, too ... 

We are taught, as heart patients, to never look at others’ progress in recovery and wish we were them. To just focus on us, to be in tune with our own bodies, to listen to them, and to focus on getting our own bodies better ... 

And yet, despite so many differences and nuances because we are all different people, there are so many similarities between heart patients ... The scare, the dread of being opened up, the pain, whatever its level, the up and downs in the ICU, the nightmares, the confusion, the low pulse followed by tachycardia, the high blood pressure followed by deadly low numbers, the lung damage, the dreaded spirometer challenge (Gosh, I hated that thing!!), the experimenting with pain killers (one minute you want to OD on them they are so good for pain, the next you want nothing to do with them ‘cause they make you lethargic or make you throw up) - I have experienced all these and so have many of my heart patient friends ... 

I have been lucky to be close to my friend Kate, that I met through the website of a heart valve surgery support group during my surgery and the subsequent recovery, 9 years ago. We are of similar ages, and have known for a long time about our heart disease. We have been pen pals (do people even know what that means anymore?) ever since. We exchange notes and horror stories about doctors, frustrations with our recoveries, and complications from our continuous disease, but also successes and small victories (that are monumental to us). 

Kate is also my hero and my role model because she has had open-heart surgery now three times ... She just got out of her third one, to replace both her aortic and mitral valves. Although I have coronary artery disease and valve disease and she has multiple valve disease (this is the difference), our journeys have been very, very similar in a lot of striking ways (this is where we are alike). 

She just left the hospital today, after 12 days for this third surgery and she sent me a picture of her leaving the hospital. My heart jumped when I saw it. Because this was almost exactly the picture my husband took of me when I was leaving my hospital after my surgery 9 years ago. The resemblance simply made my heart skip a beat ... And all those similarities between Kate’s and my journey came rushing back ... 

2 August 2025 - 19 February 2016

All I could think about is: WOW! This is THE picture! This is the picture one takes after they survive the worst - hugging the heart pillow and smiling, high on the notion that we are still walking the earth with foreign materials in our chests forever and God knows what else ahead of us. Smiling because we’re alive. Because we cannot believe we’re breathing and on “the other side”. 

I am sure everyone will see something different in these pictures. But what I see is all the similarities that bring us closer together as time goes by. That heart pillow alone and how we're clutching to it - it is your survival security blanket; it helps you breathe without pain and the only thing that stabilizes your (still) very "crunchy" chest that feels like puzzle pieces not yet glued together.

Kate, too, like me, knew she had bad valves quite early in her life, in her late teens. And she stuck with it, too, and she watched it and she did something about it before it did something more awful to her  ... 

I also see in this picture both of us surviving despite the many shitty prognoses; surviving despite the inability to tell yourself one more time “it’s gonna hurt; it’s gonna be hell, but I gotta do it to live to see another sunset and get another kiss from my cat (or dog), to live to jump on another plane one day to see my earthly paradise (we all have one), far, far away, to make love one more time; gotta do it!” ... 

We’re both still weak in these pictures, we’re in the passenger seats, we relinquished the reins, we are being cared for (how lucky is that alone?), and we are weak-looking, but there is fire behind those eyes and there is resilience and there is grit. 

I am sure she’ll have stories to tell after her third visit in there, going through the deep, deep darkness of literally being put to death and then brought back again. This is how I feel when I look back on my surgery: they literally stop your heart that has no blood going through it for a while, and then they magically make it beat again. The next thing you know, you walk out of the hospital and you go home with a new lease on life ... Sounds simple, and trust me: both for Kate and I, this journey from when you go in till you get out felt like at least 10 years ... But that smile says it all ... 

When it comes to life’s challenges, open-heart surgeries are quite up there in kick-butt-ness, in my book. Every surgery has a risk, sure. Every paper cut can give you a lethal blood infection. But there are few things in life for which you have to die (like open-heart surgery) to get better... And we did it willingly. Thank goodness we knew ahead of time that we needed it ... And thank goodness that for heart disease there are ways to manage it. 

I can’t think of anything more humbling than being sick and coming back to life. I can’t think of a more character-building experience than going through what Kate has gone through, not once but three times ... She is not 50 yet ... 

The title of this blog belongs to Kate, hence the quotes - this is what she said when she saw these pictures: “Heart sisters foreva”. I could not agree more, and I could not feel more honored and proud to have her say that ... We may be different people, we may live 2000 miles apart, but we have this invisible bond that connects us across miles and time zones, and although every muscle hurts different for her and I, our hearts still beat to keep us alive, despite the different kinds of ordeals that they have endured, despite the different number of times they went silent. Our hearts are ultimately stitched up and broken just the same. And that will connect our lives and our stories forever ... 

Speedy recovery, my favorite warrior and welcome home! And I’ll leave you with the advice my own surgeon gave me 9 years ago, the day after my surgery: “It’s up and at ‘em from here out!” I have no doubt about it! 

The End of an Era: "Good Bye, Praluent. Hello, Repatha."

I have had a long, sinuous, adventuresome path with PCSK9 inhibitor drugs. 

A complete unknown when my FH was diagnosed 42 years ago, a dream or a vague promise for most of my adult life, they have become the drugs that probably extended my life, right along with my very invasive open-heart surgery 9 years ago. 

I remember around 2009 or so, the pharmacist that worked with my cardiologist at the time in Greensboro, NC, shared with me that there was this clinical trial on the horizon (not available yet) where they would test this new class of drugs, called PCSK9 inhibitors, and he thought that I would be a perfect candidate for signing up for it. But as a rule, I don’t want to participate in clinical trials. As a rule, I accept taking a treatment only when it’s been officially approved and only if there is no major impact on the quality of my life. 

Well, PCSK9 inhibitors were not approved, so I said no, however promising their clinical trials were at the time. Then, around 2011 or so, the same pharmacist went through some hoops to find my new information as I had moved to Utah and contacted me to share that they have a clinical trial in Salt Lake City that would allow me to participate. A couple of years or so later, he said they were seeing really good results with these new drugs for FH patients, and to please consider participating. He said he could contact the clinic in Utah on my behalf to give me a referral, but I politely declined again. 

At the time, my LDL levels were still dangerously high, going up and down between 250 and 300 mg/dl, although I was taking cholesterol-lowering drugs that were on the market at the time; but they were not enough. I still said no, I would not consider this but I was absolutely stunned that he remembered me and he went out of his way to find me and share this news with me. 

Fast-forward a couple of more years, and at the end of 2015 (the year when Praluent was finally approved), I was told that I needed pretty much emergency surgery to replace my severely stenotic aortic valve and to ultimately have several bypasses of blocked arteries. 

My surgery was performed in February 2016 and both the surgeon and the cardiologist sat me down very sternly and explained in great detail what intensive damage my very high cholesterol had done for the first 40 years of my life. They both encouraged me that if there is one thing I can do for myself, for a healthier life, and to ease the impact of cholesterol on my arteries, was to keep the cholesterol levels, particularly, the LDL, as low as possible through any therapy I can tolerate. 

My cardiologist at the time had been involved in the PCSK9 clinical trials in Utah, so he was very familiar with the drugs and with FH. He asked me to please consider these drugs as now they were approved and my LDL cholesterol was nowhere near normal. 

After seeing the results of my surgery and living through the really hard and lengthy recovery from it, as well as developing even more heart disease, I decided to start taking a PCSK9 inhibitor drug at least for 6 months or so to see if it truly would impact my levels so dramatically that it would be worth it in the long run. 

My cardiologist prescribed Praluent which I started taking in April 2016, about 2 months after my surgery. 

After the first month, my LDL dropped from 260 to 184. After 3 months, in July 2016, my LDL was 104. I was shocked! There were virtually no side effects. On the day of the injection and a couple of days after I had a runny nose like I was about to get a cold or like my allergies would act up. And then there was nothing else. I asked the cardiologist what made him choose Praluent over Repatha as both were available at the time. He quite simply said: “It was a coin toss! Either one would work. I just went with Praluent.” 

I have been happy with Praluent. Outside of the inconvenience of taking a painful injection every two weeks, worrying about keeping track of the schedule (easy to do with any calendar app), and ensuring I’d pack my injection pen when it would be due while I was traveling, it did wonders for my cholesterol levels - so all the challenges were small prices to pay to ensure my arteries would stay clean. 

My LDL target is 70 mg/dl. Praluent did not manage to lower my levels to lower than the low 100’s but it was better than walking about with 250-300 levels. So, I knew this would be a life-long drug for me. My artery disease, especially in my carotids, has stabilized. My carotid ultrasound used to be worse from year to year up until 2016. For the past 9 years, they have been mostly stable with no visible sign of worsening. 

In 2017, I was called upon to write an amicus brief to defend Regeneron’s lawsuit in court against the Repatha maker, Amgen, who was looking to push Praluent out of the market. I gave the perspective of the patient on Praluent and spoke about how important it was for people to still have access to Praluent, in addition to Repatha for various reasons. 

For me, I don’t like the fact that there is a chance of Repatha increasing your blood sugar levels. I don’t have diabetes, not even closely, but I do have a rich history of diabetes in my own family - virtually everyone with FH has eventually developed diabetes in my family. 

I have now been on Praluent for 9 years and I have managed it pretty well. In a way, I got very comfortable with it and it’s one of those instances of “you’re not afraid of what you know.” Even if there was not much thought, not more than “a coin toss”, in my doctor choosing it for me, it’s become my drug. What I am used to. What I know how it will affect me, for good or bad. That is a level of comfort that I struggle with letting go of. 

But in comes the year 2025 when my insurance company sent me a letter to notify me that starting with this year they will no longer pay for Praluent and I absolutely must switch to Repatha. I was very, very disappointed. I spoke to my cardiologist (I moved back to North Carolina so now I have a new cardiologist) and asked him if he could speak with the insurance company to persuade them to still continue covering my Praluent because I was afraid that my diabetes family history might catch up with me and I don’t want to risk adding another condition to my laundry list of issues. 

The doctor preemptively agreed to talk with them. He actually asked his nurse to call and see what she could find out. The nurse was not very empathetic about it. She called me and in no ambiguous terms said that “a family history of diabetes is not reason enough to not take Repatha and that only proving that elevated blood sugar while taking Repatha would be considered a reason to revise the insurance’s demand for switching to this drug.” It was not clear if this was her opinion, or something she was passing on from the insurance company. She encouraged me to try it and watch my sugar closely and we’ll react based on that, if necessary. 

I also spoke with my insurance company to ask them if I could please stay on Praluent, given my long-time record of it working fine for me, with virtually no side effects, and considering I have a history of diabetes in my family. They said those denying to pay for Praluent are actually not them, but my employer. They also said from what they had seen this year, my employer refused to pay for several other medications and from what they have seen from patients pushing back, they have not been too successful to make the employer eventually pay for a “non-approved” drug ... They said I was free to put in a complaint with the employer but they told me to be prepared to be told “no”. 

So, I conceded and accepted my fate ... Starting in August of this year, I will start taking Repatha and this last week was my last injection of Praluent. It’s like saying goodbye to an old and trusted friend. I have no idea what this new (to me) drug will do to me, but I know enough about how sensitive I am to changing drugs and how every drug is different, although it’s in “the same class” to be a little nervous about this switch. 

Of course, the recent lawsuit that found Amgen guilty of essentially bribing pharmacies to only prefer their product over Regeneron’s Praluent (https://www.fiercepharma.com/pharma/amgen-hook-pay-more-400m-after-regeneron-triumphs-cholesterol-drug-antitrust-suit) gives me additional pause. 

But what can one do? This is one of those cases, I feel, that what is good for the patient, or what the doctor recommends that might be good for the patient, does not always jive with what the money-making industries of pharmaceuticals and insurance companies are willing to make available for the patient. It’s one of the most frustrating parts about dealing with a disease that cannot be managed without medications. It’s adding the burden of unaffordability or muddling through preventable side effects to the burden of the disease itself. It never feels fair or compassionate, in any way. The “do no harm” is definitely overlooked in situations such as this. 

The (small) silver lining I have seen, from what I have read so far about Repatha, is that the drop in LDL levels seems to be higher than the drop with Praluent. But will it mean the same outcome to me? Only time (and trial) will tell. I will report back. 

Yearly Carotid Ultrasound and New Numbers

Part of the FH and heart-disease journey is to familiarize yourself with a life peppered by doctors’ appointments. And yes, that is not a typo: there will be many doctors, many specialists, and many tests during a “normal” year of your life. 

Most of the time, I see these appointments as routine. I still chuckle when a coworker takes a whole day off for a stress test and is incredibly fearful when their doctor orders an EKG or a heart echo. There is no comparison in medical journeys, and I am going to be the first one to admit that.

But I only speak for me, now; and to me, these are “the easy” tests. In fact, I have met more doctors that agree that stress tests are a waste of time and money and they are seldom accurate or reliable. So, if they allow me the privilege to choose my test (which most of my doctors do, for whatever reason), I usually skip the stress test, and go for something more invasive even but hopefully more accurate. If, that is, my insurance also affords me this luxury. 

You will find sometimes that the insurance demands a lesser (even non-conclusive) test to be performed if it’s cheaper rather than approve a more costly but a more accurate test. No, the business of medical care, especially in this country, but we are not alone, is not a fair game. 

So, this month, it was time for my yearly carotid ultrasound. Ultrasounds are not invasive, by the way, and still believed to be the first in line for basic imaging.

The results of this test used to be a little worse every year back when my LDL cholesterol was hanging out around 250+ mg/dl. But since I started taking Praluent (in 2016) which brought my LDL down to 150 mg/dl (twice the target, but still much lower), the carotid ultrasound results have been pretty stable, or stationary, showing a buildup of plaque hovering around 50%. They have been so stable in fact, that some doctors argue that I don’t have to do this test every year anymore, that my plaque seems stable and with this amount, there are no interventions recommended. So, they say, we should move the test to every 2 or 3 years. 

So far, I have not been convinced that we should do that. I have seen cardiovascular disease go downhill in less than a year with FH, so I don’t trust my body that it will ever - regardless of how well the drugs perform - stabilize in such a way where I won’t have to watch what the disease is doing to me ... So, I insist we do the tests. 

Also, the impetus of my insistence on this particular test has been my symptoms. No amount of medical science and no amount of doctor “smarts” can convince me of something my own body flags as “not right”. 

For years, I have had numbness and tingling in both my arms, all the way down to my fingernails. It is worse with exercise and it is worse in my left arm. With exercise, my shoulder, and left arm, as well as the left side of my neck become numb, almost like a huge claw squeezes every bit of blood drop out of them! 

I bring these symptoms up with every cardiology (and vascular specialist) appointment and they take notes, but offer little in return. Others venture a guess of “well, that could be neurological”. And I did have neurological studies done to both my arms (I would not recommend them to my worst enemy) and although there were some findings (ulnar nerve neuropathy in my left arm and carpal tunnel in my right), the symptoms from these afflictions are different than what I feel when I exercise. The level and the place of the numbness is different, and the feeling of the “huge claw” only comes on with effort. 

Over the years, although my carotids have been more or less stable, some of my other arteries have started to see signs of more advanced atherosclerosis. Usually, they give me a percentage of the stenosis or plaque. This year, they spelled it in no ambiguous terms: “subclavian stenosis”. Not once, but several times in the test findings they emailed me. Some branches of the carotid artery (like the right external carotid) also appear stenotic, but the subclavian is pretty much stenotic, with no doubt. No other approximations or guesses of what the percentage might be. 

In full disclosure, these are the findings from the carotid ultrasound:

1. Left subclavian artery flow appears stenotic.
2. Right CCA demonstrates significant plaque.
3. Right ECA appears stenotic.
4. Right ICA stenosis less than 50%.
5. Right subclavian artery appears stenotic.
6. The Left ICA stenosis less than 50%.
7. Flow in the right subclavian artery appears stenotic.
8. Flow in the left subclavian artery appears stenotic.

**PSV is 125-180 cm/s & ICA/CCA ratio >2.0 is also consistent with 50-69% stenosis.

**Comments right side: PST noted throughout the CCA.

My doctor is yet to reply to all this. I will wait for another week or so and then reach out for more details from him, although I am not too hopeful he’ll recommend any course of action. I have been told time and again that without close to a 100% stenosis or an aneurism, there is not much they would want to do, regardless of the symptoms (which they are more than happy to just medicate, much to my dismay!), because there are too many risks involved in performing a bypass on the arteries or even more in adding stents. 

But this is why I insist on repeating the test every year: what if, from one year to the next, we go from "stable" to an aneurysm, or even a tear? What if, like this year, we go from “50% to stenotic”. 

In lieu of a doctor’s feedback, I, of course, turn to the internet. And this is what the Cleveland Clinic says about the symptoms for subclavian stenosis:

• Muscle cramps when you use the affected arm.
• Arm pain or tiredness when you use the affected arm.
• Tingling or numbness (paresthesia) in the affected arm.
• Dizziness
• Fainting
• Vertigo 

I have experienced all of them for years, except for the last 2. My dizziness occurs daily now. And most if not all of these are not related to ulnar or carpal tunnel neuropathy.

As I understand (and as I have lived) it, stenoses (many of them everywhere where there is an artery) are a byproduct of FH. Just the normal collateral damage that years of high cholesterol has done to your blood vessels. 

The little bit of a good news this month has been the continuing dropping LDL numbers (thanks to the new Evkeeza infusion which seems to be going well). 

I have to literally pinch myself every time I get the new values after my infusion treatment that shows my LDL in the two-digit range. As you can see, I come from a (“natural”) LDL of 520! I still cannot believe the LDL of 65 mg/dl is mine! I wonder every month if they got my blood mixed up with someone else’s. 

I cannot thank medical research enough for the advancements they have made during my lifetime. This disease that was nothing but a death sentence to me, when diagnosed at 8, has become something I can manage now. This is why it is so paramount that we encourage medical research going forward. It gives not only hope, but literal life to people!

The hope is that I am not adding more damage to my arteries by adding more cholesterol to what has already accumulated there for the past 45+ years. But there is plenty of damage done already and with an aging body and inevitable hormonal changes, I must still continue to stay vigilant and repeat these yearly routine tests, just to understand what is still going on and to have a chance to plan, if faced with an ultimatum. And as I have known several times in my life - ultimatums do happen ...

In this scope, regardless of doctors’ orders, I will continue to fight to know more and not less; to stay on top of every change and progression, such as it will be. 

It’s a Numbers’ and a Guessing Game

As I am watching the splash-down of Crew 9 coming back from the orbit back to earth on CNN (Suni Williams and Butch Wilmore), I am thinking: my cholesterol levels did a bit of a go-up-in-the-stratosphere-and-come-back-to-earth trip in the past few months, as well. 

To recap: I added Evkeeza (https://evkeeza.com/s/) to my drug therapy in June 2024. At that time, my LDL cholesterol was 238 mg/dl. After several months of treatment, the LDL went down to 67 mg/dl (and no, I am not making this up). Evkeeza’s site boasts around a 50% reduction in LDL cholesterol. Mine was 71%. My target LDL is 70 mg/dl or lower. I was at target for the very first time in my life. 

At that time, I was taking:

• 80 mg/ day  of Lipitor (a statin)

• 10 mg/ day of Zetia

• 150 ml/ twice a month of Praluent (an injection)

• Evkeeza (a monthly infusion) (the amount is based on your weight at the time of the infusion)

Because we saw these amazing results, my cardiologist believed that we could take away some of my other medications that might not be as effective and see if we could keep the low number on fewer drugs. He suggested that I would take just the following:

• 40 mg/day of Lipitor (eliminate 50% of the Lipitor I was taking)

• 150 ml/ twice a month of Praluent

• Evkeeza infusion (monthly)

• He eliminated Zeetia completely. 

And this is when my LDL cholesterol promptly took off back in space, as it were, climbing all the way to 142 mg/ dl (more than doubled) in two months. (https://livingwithfh.blogspot.com/2025/01/here-we-go-higher-again.html) 

So, we assessed. I increased the Lipitor back to 80 mg, but that only got the levels down to 121 mg/dl after a month. We then added back the Zetia and after one more month we got back down closer to my target (which is 70 mg/dl) to 74. 

So, the conclusion of this little experiment was that the magic sauce is in the combination of all the drugs together that makes a stronger difference. So, we are back on the same therapy we started with in June 2024. 

This is what FH is: a numbers’ and a guessing game. A trial-and-error adventure. And you must. Never. Ever. Give. Up! 

The biggest compliment I have ever received was from my heart surgeon earlier this year. He was pleased with my heart condition (after 9 years since surgery) and with the way I am managing my cholesterol. He said: “The main contributor to your health is only one person: yourself. You followed through. You looked for answers. You never stopped. Congratulations.” 

I felt so humbled! 

I think the world of this man, and of a handful of people in my medical team. I think the world of so many people who coached me through my journey (including The Family Heart Foundation - https://familyheart.org/, and friends who worked for drug manufacturers, my parents who had limited resources but taught me a healthy way of living, despite their own poor choices), so for a medical professional that I respect to share this was incredible! 

And this is what I want to tell you all who are managing this disease or who know of someone who does, from the bottom of my heart: never give up. Always look for answers. When you don’t like your doctor, change them. When the insurance says “no”, appeal their decision. You might have to do it multiple times, but don’t give up. When one medicine doesn’t work, look for alternatives. I have been at this for 42 years now and I have seen so much progress in medications that are allowing us to live longer and healthier lives. It’s possible and you can do it!  

My most recent journey of roughly 9 months (almost the same amount of time that Crew 9 spent on the ISS in orbit) is finally over and it is pictured below. And I hope it stays down on earth for a while. 

A former astronaut said on the TV tonight that the most he missed in orbit was the color green and everything about it - the trees, and the grass, etc ... I like to see myself back in the green too.

The Heart Month

US president Johnson announced that February was Heart Health Awareness month in 1964 “to give heed to the nationwide problem of the heart and blood-vessel diseases, and to support the programs required to bring about its solution.” To this day, we still fight against the number one killer of all people - heart and vascular disease. 

February is a peculiar month for me. In addition to celebrating Heart Month along with everyone else, I multiple-times celebrate it as a heart-disease survivor and a member of a heart-diseased family. 

Every February 11 I celebrate the anniversary of my open-heart surgery which took place in 2016 (https://livingwithfh.blogspot.com/2016/02/open-heart-surgery-day-1-to-8.html). This year, I even got to travel back to Utah where my surgery was done and meet again with my surgeon. It was such a gift! 

After 9 years, and with many ups and downs, my heart has continued to change (you have probably heard the adage “once a heart patient, always a heart patient”). But despite the changes, I continue to live a full life (which is adjusted for me), and I am counting my blessings. 

February 20th is the anniversary of this very blog. I started this writing adventure on this day in 2011 out of a complete desert of news and information about Familial Hypercholesterolemia. There was nothing out there to give me a map on how to navigate this condition and how to live with it successfully - because I was determined I was going to live with it at any cost The only semblance of a map was what I had learned from my family and the prospects were not very happy - everyone in my family with FH had had hard lives, marred by lonely sick years, disabling symptoms, many complications, long, lingering suffering, and early deaths. I was determined there has to be another way. 

I wanted to document every step in my journey - all the tests, all the ups and downs of the treatments, all the successful and failed attempts at any medication so that others who I knew were out there could have a “real-life experience” reference to know what to expect through their own journeys. I figured that if I could reach at least one person like me, who was looking for their “tribe”, my job and the job of this blog is done. I have not put any advertising and any thought into making this blog more than what it has been from day one, but the handful of people that I know I have reached with my stories are such a gift to me! I thank you all for reading, and for your feedback over the years! I know (you have told me) you find a place of belonging here, and for that I am grateful. 

A year after I launched this blog, The Family Heart Foundation (then, The FH Foundation) (https://familyheart.org/) was founded and that truly threw our visibility as FH individuals into the stratosphere and amplified our voices infinitely. 

February 28th is also Rare Disease Awareness Day. I have known I have “a rare form of FH” since the age of 8 when I was first diagnosed. Officially diagnosed with HoFH at the age of 40 after my open-heart surgery, I am now officially a “rare disease individual”. 

Along with finding out that I am now in this cool crowd of “rare disease people”, finding out that I have a rare disease also helped my family: certifying that I had HoFH meant that both of my parents have FH. Until then, because we never knew about mom’s family history and because her levels were considered borderline (because they were always much lower than mine and lower than my father’s), no one ever suspected her of FH. She was 62 at the time we found out my HoFH diagnosis and she had advanced cardiovascular disease already.

This year, I also celebrate the fact that mom survived her first (that we know of) heart attack a month ago almost to today. She went into the ER with difficulty breathing. Being a lung cancer patient, everyone suspected it was her lungs, but it was in fact a blockage in her aorta that was not sending enough oxygen to her body. She needed a stent right away because the blockage was significant but given her many co-morbidities and her weakened health they advised against it. They kept her in the hospital for a week and treated her blockage with medication, then sent her back home with 6 new drugs among which a statin. She is 71. To me, she is still very young. 

FH is not a joke. It is a silent killer and left untreated and ignored it won’t ignore you, I can promise you that. There will be a time when it will speak. And it will be loud, and often not pretty. 

Below is a picture of me and mom about 6 days or so after my surgery. She came to babysit me while I convalesced but in an odd twist of fate I had to babysit her, as she got sick with the first symptoms that eventually lead to diagnosing her lung cancer. 

This year, as she had her own heart issues, I wished to God that I could have been there for her (she lives in Romania), but technology is all we had to keep us connected. 

I am grateful for the genes she gave me. Good and bad. Bad, to force me to learn how to be a fighter and not take one day for granted, and good to be stubborn and strong enough to fight that fight and overcome. 

She and I are both moving forward - scarred but more aware. Weak but still fighting. 

Everyone should celebrate heart month because, as my sister reminded me the other week, “we all die of heart disease.” It is the only organ that decides when they call it. 

Stay healthy, friends and heart warriors, and always know your numbers (cholesterol, blood pressure, pulse, and oxygen) and stay informed. I am living proof that advancements in medicine are working miracles and not only improving but also prolonging healthy lives nowadays and allowing us to build up new memories. Let’s hope this continues! 

Happy Heart Month to all!