This entry will be updated every time there is a change.
IMPORTANT I do not endorse any of the medicine listed below. This is simply my personal list of what has been prescribed to me for my condition. Every patient is different. Talk with your doctor to find out what works best for you. This is not a diagnosis entry, nor a generic list of treatment options. Also, I do not endorse any of the brands of food I am mentioning below.
As many of you know, for people with FH, exercise and diet do little to nothing to help with the numbers. But a lot of people ask me these things, so I thought this link would be helpful for folks who stop by for the first time, wondering what kind of regimen of food + drugs + activity I am on, for my conditions.
For thoses who have not read my blog previously and are not familiar with my condition, I was diagnosed with Homozygous Familial Hypercholesterolemia in 1983 when I was 8 years old; the progression of this disease is gradual, and over time I developed atherosclerosis and heart disease in my late teens, followed by severe CVD (cardio-vascular disease) starting in my 20s.
At the age of 40 I had a complex open-heart surgery that included a quadruple endarterectomy and bypass (one of the four vessels was the LAD, the widowmaker which was 99% blocked), an aortic arch aneurysm repair, ascending aorta replacement graft, and an aortic valve replacement with an On-X mechanical valve.
Sometime in my 40's I had a small chronic infarct in the bilateral cerebellum (basically a stroke in my small brain). This was visible on a brain MRI when I was 50.
This list changes over time. The date at the top indicates the latest update, when a change occurred or an update was needed on this article.
NOTE: You will notice that I am currently on multiple drugs for lowering cholesterol. This is common for people with Homozygous FH or people who have a hard time lowering their LDL cholesterol with just one medicine. As it was explained to me, oftentimes, a combination of multiple drugs that have different mechanisms is more helpful than just taking one drug. There is no magic to finding out what combination works for each patient. It's a trial-and-error process, with lots of testing in-between, until you find what is the best combination for you, that makes the most impact on your numbers.
The regimen I follow is not just to treat FH or heart disease, but to also treat other diseases I have been diagnosed with (like GERD, inflammatory disease, or Vitamin D deficiency, for instance).
Although the amount of drugs I take is impressive to some, I am on only a fraction of the medicine and regimen prescribed to me by the doctors I have seen. As a personal choice, I try to choose the minimal amount of drugs that make the most impact on the numbers for me, with the least amount of side effects and affects to my quality of life.
Current diet:
Current diet:
- Mostly vegan, plant based, with occasional soy and wild fish
- I eat a diet low in or free of fat, with almost no animal fat (except what comes from fish)
- I get my 'good fats' from nuts, seeds, cold-water, wild fish, and some oils (canola, olive)
- I eat fried food only 1-2 times a month, and only when I eat out and there are no other options. I never fry at home. I mostly bake in the oven with no oil (that's how I make my fries), or sauté in a pan with a teaspoon of Earth Balance spread or a couple of drops of olive or canola oil
- I use Earth Balance soy free spread and some soy-free, plant-based cream cheeses and cheese alternatives
- I use rice milk to make mashed potatoes, for baking, or with cereal
- I use vegan mayo sporadically for sandwiches (rare), to make my salad dressings, or as a binder in cooking (a 16 oz jar of mayo would last me for 4-6 months)
- My diet is high (about 2/3) in veggies, multi grains, and beans
- About 1/3 of my diet is made of carbs in the form of multi grains, potatoes, rice, corn
- I eat about 4-5 servings of fish a week
- I use sugar in the raw for my coffee (about a half a teaspoon per one cup of coffee), and no other sweeteners, desserts, candy, or sweet drinks
- The only sugary dessert I eat frequently (sometimes daily) are dark chocolate covered nuts or naturally dried fruits
- I eat a low amount of very green, leafy greens sporadically (2-3 times a week). Greens make managing my INR tricky because I cannot always eat the same amount of greens every day. Watching my INR values is paramount as I take Warfarin (an anticoagulant) for the health of my artificial aortic valve. Find a definition for INR, here: https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=international_normalized_ratio
- I drink about 2-3 servings of real alcohol (wine or beer) a week
- I usually drink non-alcoholic wine or beer 3-4 times a week
- I drink 1-2 cups of decaf coffee every day, only in the morning
- I drink a gallon or more of water a day
Current drug regimen (includes drugs for FH, heart health and other conditions):
- For lowering cholesterol:
- Lipitor - 80 mg/ day
- Zetia - 10 mg/ day
- Repatha injection - 140 ml/ 2 weeks
- Evkeeza - monthly infusion
- For blood pressure and heart health:
- Atenolol - 50 mg/ twice a day (for heart arrhythmia and tachycardia)
- Amlodipine - 2.5 mg/ twice a day (for lowering blood pressure)
- Lasix (Furosemide) - 40 mg/ twice a day (diuretic, for heart failure - for lowering blood pressure and decreasing fluid retention)
- Isosorbide - 30 mg/ day (a vasodilator, for improving symptoms of angina)
- Aspirin - 81 mg/ day (for heart health)
- Other medicines and supplements:
- Coumadin (or Warfarin) (a blood thinner, mandatory for patients with a mechanical valve) - the strength varies, according to INR values (INR range is 1.5-2.5)
- CoQ10 - 200 mg/ day (for muscle health, usually prescribed with a Statin drug)
- Vitamin D - 5000 IU/ day (I have dangerously low vitamin D levels)
- Prilosec OTC (for GERD)
- Allegra OTC (for inflammation)
Medicines for FH that I have taken in the past:
- Other Statin medications: Crestor, Zoocor, Vytorin, Prevastatin - maximum allowed doses for each (discontinued because of either poor efficacy or severe side effects)
- Niacin and Niaspan (discontinued because of poor efficacy in lowering LDL numbers and for severe side effects)
- Colestipol (poor if any efficacy)
- Cholestyramine (poor if any efficacy)
- Welchol (poor if any efficacy)
- Psyllium husk (Metamucil) - 1 teaspoon/day (supplement)
- Bempedoic acid (Nexletol) - 180 mg/day (discontinued because of elevated liver transaminases levels)
- Praluent - 150 ml/ 2 weeks (discontinued because of insurance restrictions)
Medicines for heart disease that I have taken in the past. They were all discontinued because of severe side effects:
- Metoprolol (for arrhythmia and tachycardia)
- Ramipril (to lower blood pressure)
- Losartan - 50 mg/day (to lower blood pressure)
- Spironolactone - 25 mg/day (to lower blood pressure)
Exercise and other activities:
Because I have had heart disease for many years, and because of diastolic insufficiency (heart failure) I have been limited in what I can do; I have run out of breath and caused myself angina with every fast walk, over the years.
Because I have had heart disease for many years, and because of diastolic insufficiency (heart failure) I have been limited in what I can do; I have run out of breath and caused myself angina with every fast walk, over the years.
I have never been overweight. I am 5 ft (1.5 m) tall and the heaviest I have ever been was 123 lbs. I am currently around 120 lbs (54 kg). I have always kept active, but I have been limited in doing extensive exercises for a long period of time. On average, I go on 1-2 mile walks or I hikes 1-2 times a week. In the summer or very cold weather, I walk less than this. I also do yoga for core strength once a week and I use an indoor exercise bike occasionally.
Thanks so much for stopping by and reading about my life with Homozygous FH and heart disease. I hope some of the information I share is helpful to at least one person.
Thanks so much for stopping by and reading about my life with Homozygous FH and heart disease. I hope some of the information I share is helpful to at least one person.
Much health!
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