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.