Amazing Numbers and More ...

If you remember a short while back (http://livingwithfh.blogspot.com/2016/06/update-on-all-things-cholesterol-heart.html), my cardiologist was really bummed that after 4 shots of Praluent, and after doubling the dose, my numbers were still not in the normal range. He made the decision, then,  to switch my statin from Lipitor to Crestor, saying that the latter is "just a better drug" and he hoped to see the numbers drop even more with a mix of Praluent+Crestor+Zetia. And, boy, he was not wrong.

Although my HDL is still too low, my total cholesterol and my LDL are the lowest I have ever seen in me, without a doubt. They are also  the lowest in my entire family (for years, they have been always the highest), and for the first time in my life, they are normal. The total is 155 and the LDL is 104 mg/dl. Whaaa??? I was floored when I saw this.

For a full picture of my numbers, please visit this page: http://livingwithfh.blogspot.com/2016/07/my-current-cholesterol-numbers.html.

For someone who was diagnosed at 8 with 790 total cholesterol, this is no small feat, for sure. Growing up with this disease, you hear all the time, that it will kill you before they figure out a treatment/ cure for it, and by that they mean before you will ever see numbers in a normal range. Well, that too is a thing of the past for me, as these numbers are pretty amazing.

And because any medical treatment is like a double edged sword, you knew there was going to be a "but". The Crestor usually gives me side effects. I am very tired on it, my whole body feels achy, like I have the flu, and my skin is extremely itchy and it peels off in patches, sometimes, mostly around my face and neck. I knew about these side effects from taking it before, but I gave it another shot, thinking that maybe they have improved the drug and maybe my reaction won't be so bad. It was. And that was not the only problem: two of my liver results went skyward. The Alanine Aminotrasferase (or ALT) and the Asparate Aminotrasferase (or AST) went up. ALT is 98, and the highest normal is 52 - so, mine is almost twice what's recommended. The AST is 48, and it's normal up to 39.

Lately, some doctors have told me that it's no longer necessary to do liver tests while on a statin, but I personally don't feel safe taking them without seeing how they impact the liver. My cardiologist doesn't recommend them, but will run them if I ask for them specifically. And this is the reason why. For many years, statins have been known to cause liver problems. I don't believe that overnight, those problems have gone away. I would definitely encourage you to ask for both a liver and a lipid panel when it's time to test again. Better safe than sorry, right?

As a result to my bad liver tests and because it's challenging to manage my side effects from Crestor, I have asked to be switched to Lipitor, and the doctor agreed. I hope that being on Praluent for a while longer will finally be enough to keep these numbers as low as they are. I will report back after one more month of Praluent + Lipitor + Zetia to see where we will be then. 

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Now an update on my OHS recovery.

Some of you remember my previous update, where I went to the ER, being close to fainting. My BP was low, my QTc's were high, according to the machine they hooked me up to, but everything else checked out normal and other than one liter of fluid through an IV, they didn't do anything else, nor were they able to tell me what caused the episode. I followed up with my cardiologist this week and he, too, was puzzled by the whole thing. He read the EKG they did then, and he said the QTc's were in the "upper range", but not high, and either way, they don't cause a fainting feeling, as they would point to arrhythmia, which would be more like palpitations, not fainting. He did say that the blood pressure that low does cause dizziness and fainting, but he's not sure why it was so low, other than maybe I was indeed dehydrated. Once they gave me fluids, I stopped being dizzy, so maybe that was it. It has been incredibly hot here lately, and despite the fact that I am a good drinker, I might not keep up with as hot as it's been. So, anyway, that episode will go to remain undiagnosed and in the past, and we're moving forward. 

Since then, I had to go out of town for 4 days, at a work conference last week. The event was at a resort about 45 minutes from my house, so I felt comfortable being somewhat close to where I live, just in case I had to go to the ER again, or in case I needed help, with all my co-workers there and my husband just 45 minutes away.

The days of this conference were l-o-n-g and boring - just meetings, non stop, for 10 hours, and then, after an hour break, a dinner event for another 2-3 hours. All in all, I had four days of 12-15 hours each. My BP and pulse were fine in the morning, but they both went up in the afternoon. My stamina has much, much improved in the past 2 months, due, too, to building it up while trying to work full time, but my heart is still struggling to keep up, I think. My BP was around 160/55 (diastolic still low) and the pulse around 90 (mine is usually in the 60's and 70's), at rest, once I settled down for the day, as an average. Normally, my BP runs around 130/60 at rest.

One day, we had to have a team activity which involved being outside for about 5 hours, in 100F heat. Although I didn't run, or anything, I walked around most of those hours and I climbed this 55 ft hill (a thermal crater) which was on the resort property. That day, my blood pressure was the highest, and my heart felt the heaviest - I heard it the whole time in my ears and it felt like it was going to pop out of my chest. That night, a blood vessel popped in my left eye, too. That was the most struggle I experienced that week. Other than that, most of the time I was fine, just very tired, but I could push myself to go through the day, and all the meetings and all that. Everyone around me who was perfectly healthy was exhausted after this week, so I thought I did pretty good, considering.

This past weekend, following the conference, I just took the weekend off - didn't do much, except read a lot, cooked a little bit on Sunday and ran a couple of errands that day, too (light shopping). On Monday, I felt like I was a little bit better, but not fully 100% energetic, again.

I am almost six months out from surgery, and I'll have to say: I do most of the things (about 90%) that I used to do before surgery. I do some of them slower than before, but I do carry them to completion. I still can't lift much and I can't jog or run up the stairs very fast, but I was not jogging or running up stairs before. Driving still exhausts me and makes my upper body very sore. My breath, I feel, is still somewhat shallow, and like I cannot fill my lungs up fully. My oxygen levels are great, though - even at ER the oxygen was 100.
Other than the occasional high numbers, my heart seems to be doing OK. My cardiologist says he can hear no murmur, which is great and which means my valve is working correctly. He doesn't see the need to do an echo till November again. My left arm and leg are still sore, and now that I type more every day, my arm seems to be even more stiff than before. It's annoying, but not painful, per se.

I do wonder why my numbers are so off, but I keep being told that my heart is still recovering and the working and the day to day is really working it hard and will result in higher (or lower) numbers, for now. There is no arrhythmia (despite the off QTc's), no a-fib, or flutter, thank goodness. I hope, no other reason for concern. I feel so incredibly lucky for all this, and thank God every day for this outcome, so far.

My chest and ribs still hurt, even this far out. I do some of the strength exercises they taught me in rehab, sometimes, and they seem to relax a little, but it's a pain I can definitely live with, without taking anything for it.

My INR levels have been either in range or slightly higher lately. I do like them higher rather than lower though, so I am going to take that.

I do have rare days (maybe once every two weeks) where I feel like I completely forgot that I ever had surgery. I just go about my day and push forward, sometimes walk carelessly and even my ribs stop bugging me for a quick second; and I just stop and think, "wait a minute, I had open heart surgery this year" - and it kind of surprises me. This is NOT the norm, but there are glimpses like that that do happen.

Most days, I am very tired, but I have learned to just come home and nap if that happens and let the house chores, or the answering of emails, or whatever wait till a better time.
I wish everyone much health and good days ahead.

I have no words to describe the happiness of seeing my numbers be in the normal range. If this miracle drug (Praluent) is really as mild in side effects as it's been so far and it has this kind of impact on the numbers, and hopefully, on the buildup and plaques, then it's for sure a new era for all of us. We can start making plans for the old age that are more fun than just figuring out who will handle our estate when we drop dead from stroke or a heart attack. I am just cautiously happy right now, as there are still a lot of unknowns about these drugs. But, as always, hoping for the best, and definitely hoping that there will never  be another talk about open heart surgery again, in the future.

I wish all of you: the best in your health journeys, wherever you are.

My Current Cholesterol Levels

Last Updated: July 2024
 
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 July 2024
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: July 2024

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 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
• Praluent injection - 150 mg/ 2 weeks 
• Evkeeza - monthly infusion (for lowering cholesterol)
• 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 - 20 mg/day (diuretic, for lowering blood pressure and fluid)
• Aspirin - 81 mg/ day (for heart health)
• Other medicine:
• 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)
• Iron - 65 mg/ day (for anemia)
• 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

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, I have been limited in what I can do, exercise-wise: 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 2-3 times a week. In the summer or very cold weather, I walk less than this. I also do yoga for core strength 1-2 times 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!