The Roller Coaster Seems to Slow Down Some

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
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.
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.

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Blog Post by A.W.

About this Blog

In this blog I will follow my everyday journey of living with familial hypercholesterolemia (or FH). I am sharing my own experience with this inherited disorder, and how I manage it daily – from what literature I read on the topic and what my doctors say to how I live my life (what I eat, what medicine I take, how I exercise, etc). This is solely a personal account that might or might not offer some insight on what to expect when diagnosed with this condition. This blog does not offer advice, in any way, to anyone suffering from this disease.

2 Responses to “The Roller Coaster Seems to Slow Down Some”

  1. Larry C Keller

    Very disappointing results from the Praluent. I’m not a physician but am wondering since Praluent (and Repatha) works as a PCSK9 protein inhibitor maybe your cholesterol problem doesn’t relate to the PCSK9 gene itself.
    Before I was on any drug my total C was 390 and Triglycerides (TG) 225. After 80 mg Lipitor, Zetia and Welchol the total C came down to 160, TG 144 and LDL 91. But I still was building plaque and had a 3-vessel coronary bypass, and have had two carotid endarterectomies.
    After 2 shots of Repatha my total C dropped 43% to 90, TG dropped 23% to 111 and LDL dropped 74% to 24.
    I am hoping that at these low levels the progression of plaque buildup will stop or perhaps even reverse.
    Best of luck,
    Larry Keller

    • Alina Wilson

      Hi, Larry,
      I am sorry for the late reply – I just now got your comment. I will make note to ask about the PCSK9 gene not being a factor here on my next visit. Truth is, there IS a LOT (for me) movement of the numbers in the right direction. So, I am hoping that it is just a matter of time till we bring it down in normal ranges. My body seems to respond to the medication pretty well, so far. The numbers you saw are the lowest I have ever experienced. I, too, was on a combo of Lipitor + Zetia + Welchol for about a year, and the numbers would essentially not budge from when I was on just Lipitor and Zetia alone.
      And then, there is the plaque , of course: it’s what we all hope for. Being new after my heart surgery, during which they concluded that ALL the damage they found was because of cholesterol, I am truly hoping not only that my numbers will come down, but that, also, my heart and arteries will look better in time, too.
      Much health to you and keep down those good numbers.


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