If you remember a short while back (https://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: https://livingwithfh.blogspot.com/2016/07/my-current-cholesterol-numbers.htmlFor 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 Alkaline 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.
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.
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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.