My Current Cholesterol Levels

Last Updated: March 2025
 
I thought this link would be helpful for folks who stop by for the first time, wondering right upfront what are my current lipid numbers. As you all know, these numbers change over time, so I will keep this entry updated with the results of the latest tests. 

My original cholesterol numbers are two-fold: the 1983 numbers below are the first numbers ever recorded. I was not quite 8 at the time. The numbers in 1998 are those that I started with when I moved to the US. I was 23 at the time. They were both taken when I was not yet medicated for high cholesterol, so these are my "normal" numbers. 

1983 (age 8): My levels at original diagnosis in Romania

1998 (age 23): My levels at original diagnosis in the US
Click the picture to see a larger view

My current numbers are in the table below. Please note that the Apolipoprotein B and the Lipoprotein (a) are not measured every time. Although jumps can happen, their values are somewhat constant during your lifetime, unless you have a severe illness (like cancer or an autoimmune disease) in addition to FH. 

Also, notice that the new guidelines (as of 2021, according to my cardiologist's office) have changed depending on your risk factor. For FH patients or people with a history of heart attack or stroke, or with additional risk factors for cardiovascular disease the normal ranges for HDL and LDL cholesterol are lower (green column) than for people without an underlying cause of cardiovascular disease. 

My levels as of March 2025
Click the picture to see a larger view

If you want to see my drug and food regimen, please visit this page:

http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html

Thanks so much for stopping by and reading about my life with HoFH and heart disease. 

My Current Drug Regimen, Diet and Exercise

Last update: March 2025

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 does 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: Homozygous FH, heart disease, atherosclerosis, CVD (cardio-vascular disease). This list changes over time. The date at the top indicates the latest update, when a change occurred. 

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. Sometimes, 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 your best combination that makes the most impact on the 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, anemia 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:

• 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/ day (for heart arrhythmia and tachycardia) 
• Amlodipine - 2.5 mg/ twice a day (for lowering blood pressure)
• Lasix - 40 mg/day as needed (diuretic, for heart failure - for lowering blood pressure and decreasing fluid retention)
• 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
• Niacin and Niaspan
• Colestipol
• Cholestyramine
• Welchol
• Psyllium husk (Metamucil) - 1 teaspoon/day
• Bempedoic acid (Nexletol) - 180 mg/day
• Zetia - 5 mg/ day
• Praluent - 150 ml/ 2 weeks (discontinued because of insurance restrictions) 

Medicines for heart disease that I have taken in the past:

• 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. 

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. 

Much health! 

First ER Visit Ever

I am not quite sure what happened this past Friday, but whatever it was landed me in the ER, for the first time in my life. Not many answers there, though, just a lot of “it's not that”, but what it “was” is still a mystery.

On Friday, I went to work and it was planned to be just another boring day: I had a customer call, I chatted with some co-workers about how my recovery is going, and I had a team meeting. Right before the meeting, as I stood up from my desk to head to the meeting room, I fell back in my chair, with a very, very heavy head, and the very distinct feeling that I will faint. My vision was blurry and all colors in front of me turned gray. I felt like my eyes were rolling back in my head. I felt a huge head rush come up my spine, and instantly, I got a headache, in the back of my head. Then, the rush was slowly draining down through my spine, into my legs and feet, and it was dragging all my energy down with it.

My breath was shallow and scarce. My chest was in huge cramps, and the left side of my ribs too. For a minute I thought my bra was too tight, and I pulled at it, but the cramps were deeper than that. My tongue was very heavy in my mouth, I had to speak very, very slowly, and my voice got very quiet – which usually happens lately, when my chest is in pain.

At its worst, the whole thing lasted about 5 minutes. But after that, I was extremely dizzy, and my speech was still not right. I felt like I just took 15 percocet pills and I was sooo druggy, dizzy, disoriented, and lethargic.

I went to my meeting and sat in it for an hour through extreme dizziness. I did text my husband that I am not well, thinking that if I will faint, at least he'll know to call my work and ask about me. I told a co-worker that I am not feeling well and I told him how to contact my husband, if need be.

I have been dizzy before, since my surgery, but this was different. I have not felt druggy and slow, like this was going to be, ever, and never for this long. After an hour in the meeting and another half hour after it, after not being able to walk on my own feet, and having to hold on to walls and desks to find my desk again, I felt like this might be bad, after all, so I texted my husband to come and get me to my ER. I was thinking, if I need to get in touch with my cardiologist and my surgeon, I'd rather be at their hospital.

So, off we went. The dizziness continued through the ride to the hospital (another half hour). By the time I made it there, it had been two hours where my chest and left side ribs were cramping, the back of my head (also left side) was in massive migraine-like pain, my voice was quiet and slow, and I was dizzy. Very, very, unstably dizzy.

We went in and they put me in a room and hooked me up to machines and an IV in less than 15 minutes, I think. They did blood work, and then an EKG, a CT scan of my brain and (stenotic) carotid arteries, as well as an X-ray to rule out any fluid buildup around my heart. Everything came back normal: the heart enzymes were clear suggesting there was no heart attack, the CT scan showed no brain hemorrhage, and there was no fluid in the chest.

But my heart numbers were bad. My blood pressure was yo-yo-ing between 89/40 and 140/50. If I stood up, I could not find my feet, I had to hold on to something to be stable, and my blood pressure was lowest. I didn't know what it meant then and the ER doctor didn't look concerned, but this number on the heart machine (the QTc number) was 520 almost the entire time I was there, and the machine was beeping the whole time, flashing “QTc too high”. I found out after ER that the normal QTc (or QT Interval) in women should not be higher than 450, and 470 is borderline high. Well, mine was 520. For a definition of what this number shows, visit this site: https://en.wikipedia.org/wiki/QT_interval

The ER doctor said the number I see on the machine is not accurate, and the number on the EKG is more accurate. Well, that number for the QTc was 485, so still high. As I said, he did not seem concerned. He said I didn't have a stroke, nor a heart attack and whatever it was, to follow up with my cardiologist for further investigation.

When the QT interval is too high, I found, the symptoms are exactly what I felt, and it means your heart is severely arrhythmic. I also have arrhythmia, but I thought this was controlled by my beta-blocker, which I have taken for more than 20 years now. I guess this time my arrhythmia was more pronounced than others?!

The ER staff was great and I was grateful that they did eliminate the more severe diagnoses, but I was a little bummed they still did not give me a reason for my symptoms.

After waiting for the results of all the tests for about 6-7 hours, and having confirmed that it's all clear of a “major” accident, they decided to give me a liter of fluids, to see if that will make my blood pressure rise. I was also very hungry, by that time, but with the kitchen closed (at 9 PM) they just gave me a bag of chips (salt rises blood pressure too) to eat. My blood pressure started creeping slowly up, after the fluids were all in. When I finally took a walk around the ward, I felt much better. Still a little groggy, but I could walk without holding on to the walls.

They sent me home, and this has not happened since (48 hours now after the first symptom on Friday). I did work (lightly) in the garden for 10-15 minutes yesterday and I started getting dizzy, again, but my usual dizzy, nothing like the syncope-like feeling I had on Friday.

The next step is to follow up with my cardiologist who will have all the tests they did and see what could have caused this. So far, I am just trying to take it as easy as I can (I still have to go to work), and trying to stay overly hydrated, since the one liter of water seemed to do the trick of lifting up my blood pressure. I normally do drink a lot of water, so I am not sure if dehydration was the cause for this.

Every new day is not like another one past, still. Anything can happen, I guess, and this tells me that even after 5 months I am still not “in the clear”. It also tells me that my heart is still very fragile, and that I may never feel like I will ever be truly “ in the clear”. I know they didn't say for sure that my heart caused all this, but I have a good feeling that it was my heart. My blood pressure and the QT interval numbers, along with the chest pressure I had all tell me it's my heart. And by now, I know.

I don't know what caused my heart to go into such a shock, so suddenly, with no change in routine, diet, medication, or any other external factors. I'll update more when I see my cardiologist and hopefully he'll have some answers for me.

Good health to all, and as little surprises as possible. 

 

 In the ER - notice the blood pressure is 103/41 and my QTc is 499. Not sure why I was smiling, as I was pretty scared ... 

Life at Five Months after Open Heart Surgery

Tomorrow it's five month to the date since my OHS. To recap, they replaced the aortic valve with an On-X valve, they replaced my ascending aorta with a Dacron graft, they cleaned out my aortic arch from all the cholesterol calcification (they needed to put me in circulatory arrest for these two) and they did 4 by-passes, so they harvested a vein from my left leg, and an artery from the left side of my chest. What can I say? They hacked me up pretty good.

Life has been s-l-o-w-l-y creeping back to 'normal' in the past 5 months – whatever that 'normal' means nowadays. I have started working on May 17, and initially I was working 4-6 hours a day, with working from home one to two days a week. Now, I work pretty much full time (no overtime anymore, just 8 hour days), every day of the week from the office, which is about 30-45 minutes away.

I have really good days, when I move freely and I can accomplish a lot, physically (commuting just fine, cooking dinner, watering my yard by hand some days, house chores, light shopping) and I have days when everything screams in pain: my chest, my back, my whole upper body, generally, my hips. My left arm and leg are still numb, same amount as 5 months ago. Some days they aggravate me, and they feel swollen, and some days the pain is bearable, and they just feel like annoying needles poking me.

My blood pressure has inched itself up to close to normal values and I only take it about 2-3 times a week, now, not twice a day, daily. Last time I took it, it was 126 over 50, so slowly getting the diastolic closer to 60 (used to be in the 30's and low 40's for months).

I am still not able to carry much weight. I still use a dolly for my work bags and I push my laundry baskets with my feet till they make it to the laundry room. I still “cheat” on the seat belt, and I leave it very loose across my body, because if it's tight, it bothers my chest a lot. I still need help with my heavy pots, when I am cooking, and help pilling my cat, because my left hand is half frozen, still. I still need help with grocery shopping, too. I go in for a couple of things and I manage fine, but when I have to push a cart full of stuff, I need my husband every time. Unloading and loading them from/ into my car is hard, too, so I can't do it alone, either. I tried a couple of times, and I start panting like a dog!

My chest is very sensitive, still. My incision (full sternotomy) has keloids from space to space, and it's still very sensitive and bright red. Sun hurts it even more, so I cover it pretty carefully when I am outside. I have days when my drainage tube scars are very touchy, as well, and sometimes itchy. I had a mammogram a couple of days ago, and when they did the left side (which is still frozen, numb), I thought I was going to pass out from pain. The nurse almost didn't want to do it at all, because “the scar looked fresh” and you're supposed to wait for at least 6 months to do this test, after heart surgery. I had put off mine for so long, that I went ahead and did it. But if you can wait more than 5 months for yours, do it, because I think it will hurt, otherwise.

I went on my first real overnight trip (two nights), in a hotel over July 4^th. We went to Sun Valley, ID for two nights. The drive up there was about 5 and a half hours, and the time in the car bothered my ribs. Once there, I took my sleeping setup (thick blankets to place pillows on top of, to sleep almost sitting up), but I discovered after two nights that I can get rid of the blankets and I could sleep with just two pillows and I was fine. That was a huge milestone, as now I can sleep almost flat again. I still cannot sleep on my side, though, which is my favorite position. But it will happen, with time. I know it will.

The trip was great, overall, but I did get very tired the one full day we were there, from walking around in the heat, in a hilly town. I had to rest for about an hour- an hour and a half between my two couple of hour walks that day. But I made it.

I find out that heat is my biggest enemy. The minute the temps make it over 90F, I cannot be out there and JUST BE, for more than half an hour, before my heart starts pounding and I feel like I am about to pass out, veins swelling up on my hands and feet. If I 'do work' in that temperature, I last even less than half an hour.

I have had a couple of episodes of feeling fainty/ dizzy, and feeling like my head is too heavy, where I have to sit down and rest a bit, but those are very rare now, maybe once a week or so, and they are very short lived. They usually come when I am extremely tired, after doing too much, or when I am in the heat.

This past weekend, we had a house visitor, and she had never been in our area, so I had a lot of things planned for her. Just to give you an idea, I took her to dinner on Thursday night (about an hour away from our house). Then, we drove to a resort about an hour away from our house again, and had lunch and shopped for about 3 hours, in 85F weather. The walk between the stores was all outdoors and on very steep hilly streets. Then, I drove us another 30 minutes to another resort where we met my husband for dinner. Then, Saturday, we went to a lavender farm, where we walked around for about an hour in 95F heat (or more; it was very, very warm out there!!), and then we had a cookout at our house (heat again). My ribs were hurting big time by the end of the day yesterday, from all the car rides, and driving and I was very much drained – just kept yawning early last night. This morning, I slept in, and I did get dizzy in the shower, and very tired. Today, I am taking the day off, nap, sit on the couch, and just catch up on life.

Five months ago, or even 2 or 3 months ago, all this would not have been possible! I am amazed every day at what my body can do. I still get no warning about being tired. When I have the stamina (and that has improved amazingly over the past 5 months!), I just go-go-go, and usually the following day, the tiredness hits and I have to just stop the show!

My biggest disappointment is my INR values. I am still struggling with keeping it within its range (which is 1.5 to 2 for me). Two Fridays ago, I went in for an INR check and it was 1.6 – which is good, but … it was too low for my comfort. So, I ate just foods with very low vitamin K (like tomatoes, cucumbers, pickles) for a couple of days, just to make sure I won't get it too low. About 4 days after that, I took it again and it was 2.8! I ate a serving of peas, just to make sure I bring it down a little, and in another 2 days, it shot up to 3.1! I did not change the dose, of course, and I left several days go by, with diet in between to help it down … But no way, it shot up to the skies.

In the past, when I had my 3 servings of greens a week (always the same quantity, about a cup), it was on the lower end of the spectrum and at that time, too low (after surgery my range was 2-3 and then, the INR was hanging in the 1.5 to 2 range). It's bizarre, and I have not figured out yet what I am doing wrong … Still looking for ideas and ways to manage it, and to keep it somewhat consistent. Watching what I eat every meal, like a hawk, does not seem to cut it.

I am going to the clinic every 2 weeks now, and I measure it at home, too, myself, on the “off” week, when I don't go in. I wish I could rest assured for about a month that it can live in the right range, but it has not happened yet. I am happy that it's not typically too low. Lately it's been either within my new range, or very much higher. The danger of bleeding is bigger for me than the one of clotting the valve, and for now, I am learning to live with that fear. I'll have to say, it seems to be easier to handle the fear of bleeding than the fear of clots.

I sometimes lie awake at night thinking of my “fake parts” inside of my heart – the artificial valve and the artificial aorta. I am visualizing them, and imagining them at work, and praying and casting a small blessing on them, asking them kindly to keep working for me. It's kind of eerie what they can do nowadays. I am so grateful that I had something that could be fixed. There are so many hundreds of thousands of afflictions out there that are hopeless for so many people. For innocent babies and unborn children, even. I got lucky! I am also learning to trust them more and more and seeing them as part of me, and not a strange 'body' anymore.

The one thing that open heart surgery has taught me so far, a very powerful thing, is just how much our hearts work. Right after surgery, when my poor heart was beaten up senseless, and so tired and so weak, for month, everything, even breathing, walking up a flight of stairs very slowly, showering took a Herculean effort. Sitting up was an effort, for days and weeks. Putting my shoes on took forever, and it rendered me breathless. This is how I knew my heart was not ready to do all these things yet, it was still recovering. I never take any move of my body for granted anymore, because I know of the amazing hard work that goes into it from my heart. I am so thankful and so humbled! 

The 'rhythm' of the past five months has been just 'one day at a time', and I continue to keep that stride. I never have two days alike, and every day teaches me new things about myself, and about this heart disease journey. As one of my favorite songs goes, "the only way out is through", so I'm happily carrying on through this amazingly lucky journey I have been cast on and eagerly waiting what is behind every corner, of every day. 

Much health to everyone, always!  

Update on All Things Cholesterol, Heart and INR

Another week's passed and more lessons have been learned. As I mentioned before, not two days are alike anymore. Every day is a new adventure, for sure. 

Last week was the first week when I worked from the office every day. That's commuting one way for 30-45 minutes every day. I was physically in the office for 7-8 hours each day, and somehow I made it to the weekend in one piece. It was a good week, and my energy level seemed to carry with me throughout. 

On Saturday, I did too much, even in my own estimation. We went for a drive around the mountains, above 8000 ft of altitude. Then, we hiked a very easy trail, which was about a mile long, around Silver Lake, UT. If you ever have the chance to stop by, the Big Cottonwood Canyon area is breathtaking.

As if the hike was not enough, we went shopping after that, but just at Costco. Then, we came home and because the temperatures "dipped" for the first day in many weeks down to low 90's, I worked in the yard for about three hours - just pruning my roses, weeding my garden and watering my boxes. I thought for sure I was going to be dead by Sunday, but nope ... I was a little tired, but functional. However, I took Sunday off, and just sat around the house, mostly doing easy chores. 

I was SO grateful for such a full day on Saturday, because I remember days right after my surgery when a shower will exhaust me to the point that I would not want to sit up or climb down the stairs for an entire day. Recovery is real, I tell you, but you still need to give it time.

Sunday night was weird, however. I had very hot sweats that started around my lower chest. Just internal sweats, if there is such a thing. And I was very dizzy when I would stand up. Then, today (Monday), I have had zero energy. I did go to work and to the clinic for an INR check, I cooked dinner and did some laundry, but I was kaput after that. I had to lay down and nap for half hour. I guess it caught up with me. 

My blood pressure was super low today - at 104 over 42. Just weird, I guess, but maybe my Saturday adventures are now making me pay back!

I got my own INR checking device last week. After a few struggles to get a good blood sample onto the testing strip (think about 4 failed tries), I finally did measure it on my own and it was within range. After some more greens between Saturday and today, the INR at the clinic was 1.6 - still in range but lower than what I got Friday.

 

My CoaguChek device and my INR value 3 days ago - in range (which is 1.5 to 2.0)

I will take the device with me next time (in 2 weeks), to measure it against theirs, to see if there is a difference between the measurements. I didn't know that my insurance would cover any of the cost of the machine, and strips and lancets, so I bought it on my own. But it's good to check if you're considering buying one. 

Now about the cholesterol "struggles". They switched my statin last time I went in: from the Lipitor I have taken for almost 18 years to Crestor. This was done in an attempt to bring my numbers down to normal ranges - which we still have not seen after 4 shots of Praluent. Crestor has been tried on me before, and the side effects did not allow me to keep taking it. The cardiologist asked me to please give it another chance, because the drug has improved over the past few years, and "it's simply a better drug than Lipitor", in his words. 

For the first week of taking Crestor, my muscles hurt, and some of my joints hurt (my knuckles, my knee, and my hip muscles). It was a dull, annoying pain. The skin on my neck started peeling, as well, which were exactly the side effects I remember from trying it 10 years ago or so. 

Because the pain was manageable, I thought to stick it out for another week, and the pain did go away after the first week. However, the skin on my neck is still peeling - it looks like a burn, really, and no amount of makeup will cover it. Some days it's more pronounced than others, but it's definitely there to stay for now. Last time I took Crestor, the skin peeled on both my neck and my face, but now, it's only my neck, so far. I'll try to stick with the drug as much as possible, at least till the next test, unless the muscle pain will come back and feel worse. 

Till then, just taking one day at a time, and going back to measuring my blood pressure daily. I felt pretty good till last night, so I stopped taking it regularly, but I think this heat is limiting me and definitely affecting my heart. 

Good health to all of you!
 

The Roller Coaster Seems to Slow Down Some

Bear with me. There are a lot of updates.

It started with Sunday night, when I was cooking dinner. I cooked for about 2 hours with no incident, and then, I chopped a piece of flesh off my pointer finger, right above my nail, as I was cutting up some onions. This is, without doubt, the biggest fear anyone has when on Coumadin. You don't clot. Especially when it's more than a paper cut, an actual piece of finger missing, you just don't clot. We finally went to the Urgent Care when pressure and tons of gauze could not stop the bleeding in over an hour. They laid me down, and they raised my arm, and applied pressure with a couple of clotting gauze on my wound. It finally stopped bleeding after 30-45 minutes of being there. We came back home and the rest of the week, I am babying this finger to death. Two days after it, when I finally was allowed to open up the compression bandage, guess what: it was still bleeding! Another clotting gauze on top of the two the Urgent Care placed on me, and I am back to an all bandaged up finger and watching it. It'll be a hassle while it's healing, I am sure.

This episode came after last week my INR hiked all the way up to 2.4. My range is 1.5 to 2. For some odd reason, the INR jumped from the week before to 2.4. No changes in diet. As I mentioned before, trying to keep my blood INR in the recommended range has been close to impossible lately. I have been checking it at the clinic every week, since my surgery, 4 months ago. It's not a hassle, because I do want to stay safe, but I am worried that it's not stable yet. Just something we, mechanical valve people, have to deal with.

Last Friday, I also had my 4 month post-op echo done. I mentioned before that my echos up to now have not been good: my ejection fraction dropped after the post-surgery heart attack I had in the hospital (from 70% to 55%), and my left ventricle has been enlarged ever since, too. My blood pressure has been low, especially the diastolic and my new valve has been leaking, still. So, this echo was awaited with tons of apprehension.

I saw my cardiologist yesterday and he was the first one to read me the results from the echo. Although my ejection fraction went up, from 55% to 62% (good), and my left ventricle is now of normal size and thickness (also good), my aortic valve is “moderately leaking”, in his opinion. The severity of the leakage goes up like this: trace, mild, moderate, severe. After this whole experience of cutting my heart in half and replacing my valve, I would have liked the leakage to be at least a “mild” one, if not a “trace”. But the cardiologist thinks it's heavy enough to make it a moderate.

My blood pressure was high, for a change, at his office yesterday – which is actually a good thing, since it's been annoyingly low for the past several months. This is actually, the pattern I was in before the surgery: some days my BP would be high, and other would be low, or normal. I could never be medicated for it, since it never did just one thing.

Also, at the cardiologist's office, we went over my recent cholesterol numbers (below – last column). After 2 shots of 75 mg Praluent and 2 shots of 150 mg Praluent (this is two months of it), my total cholesterol and my LDL are still not within a normal range. In his opinion, this is not as good as he would like it to be. He has seen people drop in the normal range after one, maybe two shots. Not after 4, and after doubling the dose. He wants me to replace the Lipitor (which I have taken for 18 years now) with Crestor, and see if that will work better with the Praluent. I have no symptoms that I can tell from Praluent, so I will continue taking it. The values I see in my cholesterol now are the lowest I have ever had in my entire life. Even if they don't hit normal range, they are closer to normal than I have ever been, so I will take it. Remember, this is not a recommendation, this is just a personal choice I am making. 

I started the Praluent in mid-April. the values for that month are before the shots.

Today was my four month appointment with my surgeon. He went over my echo as well. He was at the opposite end of the spectrum from my cardiologist yesterday: he was on Cloud Nine for the fact that my ejection fraction has come back up and that my ventricle size and thickness are back to normal. He thinks everything looks absolutely “beautiful” from a heart standpoint. He agrees that in the pictures from the echos, you can see the valve leaking/ regurgitating. But he also knows this valve better than anyone out there.

The valve comes with cleansing jets, he called them, that prevent clotting. The jets are what the picture captures. The velocity of the regurgitated blood and the gradient across the valve are normal, which tell him that the regurgitation is not harmful to the heart. Furthermore, neither my cardiologist, nor my surgeon can hear the “swoosh” sound that an usual bad, sick, leaking valve makes. He listened to it from several different positions and with my breath on, and off, and half off, and there is no “swoosh” sound, like I had very clearly before the surgery, when my valve was clearly diseased.

The surgeon gave me, basically, an almost clean bill of health from a heart perspective. He said the valve is great, I made a great choice for an On-X valve and the only thing to worry about is to keep my INR healthy, so it won't clot. I cannot tell you what a relief this was. I have been waiting more or less patiently for months to hear this, and today I got that validation.

I am still tire very easily, but I have seen improvement every day in this respect. I don't take daily naps anymore, and yet I manage to work more or less full time - when I have appointments it's more like 6 hour days, but the driving to the appointments is a job within itself, for me. My chest still hurts and is very fragile. The seat-belt across it, and even my quilt over it at night, still bother it. My ribs hurt almost daily and most days, when I overexert myself, I feel like I cannot breathe deeply. My left arm and my left leg are still stiff, with very little feeling in them. The left side of my chest is devoid of feeling and sensitive (tender) at the same time – hard to describe. Both the surgeon and the cardiologist agree that this is all normal and part of the “loooong recovery” they were talking about in the beginning.

I talked to them about my now and again episodes of losing my peripheral vision, or having stars blinking in front of my eyes, or once a week fainting-like feeling that I get. According to them, it's all normal and part of the healing process. When and if these become the norm and more often than once a week, they want me to come in for more tests. Till then, “we're going to ride the wave”, my surgeon said.

This situation of your doctors, the people closest to your health, the people you want to trust more than anyone, disagreeing will come up more than you think. And my doctors don't fully disagree, per se, but my cardiologist is very cautious, and the leakage and low blood pressure worry him, while my surgeon is more optimistic and sees the improvements in my heart, which cannot be denied. But they both pleaded their input on my heart very well – they both made good points. But you will see this in your care and you'll need to either go with your gut and listen to your body yourself, or find a third opinion to break the tie. I choose to trust them both and to be cautiously optimistic.

There will be times in your recovery where you will feel lost, at the end of your courage and energy. There will be tests that will come back wrong and numbers that won't add up. There will be setbacks and roadblocks that you'll have to navigate. But just remember to do your part, listen to the specialists and keep your eyes on that healthy/ happy day target. People will tell you that things will get better, and I am here to tell you – they will. I have seen it, and felt it. They will.

I am incredibly, incredibly grateful to be here today and be able to write this. I know things are not perfect, and I don't ever hope or think that they ever will be. I take one day at a time and I think what's in front of me is what I have to deal with every day. Not wishing for more, or missing what's not there. How unproductive would that be?!

I am grateful that my angina is virtually gone. That my valve is actually normal in size and it's not damaging the rest of my heart anymore. That my bypasses have worked, thus far. I cannot even begin to tell you how grateful I am to these doctors, and to my family for keeping me together these past four months. I am even grateful that my BP is back to bouncing around, like it used to before surgery. These are all signs to me that, with patience, love and persistence I might be on the right track to healing. Hopefully. I only know of today.

Something strange happens to you when you contemplate your mortality – which this disease and this surgery will force you to do. Something strange and something wonderful, at the same time. Your life gets more meaning. Your outlook on it changes for the better and for the deeper understanding of it. You start realizing you're a miracle and you're put on this planet to have a purpose, whatever that is – building a country, or taking care of your husband and making old age easier for your cat.

You save yourself the grief of sweating the small things and every breath, every day you see the sun, every breeze you feel in your hair gets more special, makes you more grateful yet. I am not going to make any drastic changes to my life, because I am pretty happy with what it is, for now. But I am living it more fully, more thoroughly, placing more meaning on what is important and letting go of what makes me angry and which I cannot change.

This surgery kind of gives you “permission” to live boldly and courageously, because you know time might run out. I am so blessed and thankful that it did not run out for me, that cold February day of 2016.

Like I said: not all of it is perfect, nor should we wish to be. This is life, not a movie with a happy ending. And as life should have it, it will look more calico than monochromatic. I, for one, am ready for more life.

Figuring Out How Much Is Too Much

I can't believe it's summer already! We hit mid 90's around here this weekend and that, for sure, is summer. Given that my surgery was in February and the most of my heavy recovery time has been through the spring (not that now I am fully out of the woods!), I feel like I have skipped a season this year.

So, it took my body a bit by surprise when my husband and I decided to go camping for one night this weekend. Am I ready? Will I be tired? Will the altitude bother me? How will I sleep in the camper, since my sleeping “scenario” is so involved at home? All these questions and more bugged me, but we did it anyway.

Altitude didn't seem to bother me, as I was around the camp and as we took a walk around the campgrounds. My blood pressure was still the usual crazy self, with a low diastolic, but my pulse was normal and the systolic in the 130's. Yes, I travel with a blood pressure monitor now, to stay in touch with what's going on “inside” and I do keep a journal with the values I find.

 

This was at the half point or so of our campground walkabout. It was a warm day, and before surgery, by this time, my face would have been completely burgundy red. It never got that way, even by the end of the "hike". As you can tell, the trail was a paved road, so not very strenuous, but you can see the incline. 

The backdrop, like everything around where I live, is stunning. 

  So, it all seemed like my “now, normal” self during the first day we were there. At night, though, just laying down, I could hear my heart beating strong and fast and somewhat arrhythmical, too – faster and slower, then fast again … My chest didn't bother me while walking, but when we hit a steep incline, I felt like I was not taking enough air in. Nothing hurt, but I just needed more/ deeper breaths. It felt very different than the angina I had for years before the surgery.

We didn't do much along the lines of physical activity, on this overnight trip, other than the 20 minute or so very slow walk around the campgrounds. We mostly rested, read, painted, made a fire, played a board game. We took it very slow.

Then, when we came back home, I was out in the 90+F heat for maybe 30 minutes, just helping my husband park our RV and trying to help with unloading. I got extremely tired doing that. I came inside and left the unloading to him, as I washed a couple of easy dishes. Then, I took a shower, and honestly after all that, I felt like after coming home from the surgery – extremely, incredibly, unbelievably tired. I felt like something knocked the wind out of me. Very weak, and like I was going to faint. It was not quite light headed-ness, but it was very marked weakness and a drained feeling. I had to – had to sit down and just do nothing for a couple of hours. I did some laptop work and I ate a salad, but not anything else. My blood pressure was a little high, at this point, too (141 over 53).

No idea why such tiredness after this one night escapade. Maybe just being displaced and not all the way comfortable in the camper took its toll? Or maybe the changes in altitude did have an effect on my heart? Or maybe the 30 minute heat did it? Or maybe all of them. No idea. Just taking one day at a time and finding out where the new boundaries are.

Camping was amazing! So good to be in nature again, and to breathe fresh air, to look at endless mountains with peaks still heavy with snow and to smell sap on the pine trees all around and the smoke of a real fire. It was good to at least try to be “normal” again, and do really normal things.

I am not sure what kind of strength I have at this point (almost 4 months), so I'll keep trying to do things in small bites, just to find that out. I still have range of motion and weight lifting limitations, and I still get tired very easily, so I do take things easily, compared to what I did before the surgery. But I try to push limits just a little bit some days, to see how far I can go into normalcy again. My body always reminds me, though, quite often, that pushing it is OK as long as I back it up by plenty of rest.

 

 This is a "bonus" picture of what I eat these days. And unlike before, when I didn't stick to my diet when I camped or traveled, I do stick to it now, because of my food allergies/ intolerance, which make(s) me feel miserable: I still try to stay very low fat and vegan, with the exception of some wild fish. Here is my camping dinner: corn, vegan baked beans "dog" with organic, low fat potato chips and tomato salad. 

The benefit for my cholesterol (although with FH, diet has little impact on it) is that it's a lot easier to stay low fat/ no fat on vegan foods than it is on animal products.