Living with FH: A Personal Journey

Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
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)
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!   To view original post visit: 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.

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