Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
I made it!! I cannot believe I made it in one piece, but I did – I lived through my first week back at work, after being away for 3 months to recover for open heart surgery. My cardiologist wrote me a note, to not work more than 4 hours a day for the first 1-2 months. Well, I am not one person to watch the clock, really. So, this first week, I did anywhere between 4 hours a day to as much as 7 hours a day. It turns out, HR doesn’t know how to manage a part time schedule for a full time employee, so … I’ll try to stay closer to a full time day of work if I can. However, I am incredibly lucky to be able to work from home some, too, and this way I can cut my commute a little during this time of adjustment. First week was much as any other week in the recent past: good days and bad. Some days, I could pull through with not much thought about it, and some days, I felt like I got hit by that truck again. One of the days, I lost my peripheral vision for some time (hours), but it came back. That same day my blood pressure was yo-yo-ing all over the place: from 95/40 to 155/50 in the same hour, and all at rest. The pulse was high, too … No idea why, other than being tired. It’s been hard to maneuver my “luggage” for work – I have a dolly that carries my bags but putting it in the car and taking it out is working my every muscle, and my chest, most of all, and it’s making everything pop and painful. Driving has been a challenge, too, just the sheer tenseness of it, and the tiredness that comes with the adrenaline pumping with every cowboy passing me at 100 mph. Mentally, I think this is been a good change of pace. I can feel I am useful to some people, again, and not totally reliant on everyone around me. I am taking it easily, though – walking slower, using my handicap sticker to park closer to the building, and taking naps every day once I get home. I do try to leave the house and my office after rush hours are passed, to avoid the stress from driving 30+ minutes on an open highway. This week I have also met with a vascular surgeon for the first time ever. I have always known I have carotid stenosis, of various degrees. But I have never had this evaluated by a vascular surgeon. Given the dire state my aorta was in once they opened my up for heart surgery, I wanted to make sure that a similar operation is not needed for my carotids, given the history of multiple strokes in my family. He did an ultrasound right then and there, and he also did a doppler for the circulation in my legs. He qualified my carotid stenosis as a 50% overall, which does not require intervention (surgery or stents) at this time. Those will be options we’ll discuss if the percentage goes anywhere around 75. However, he was hopeful that now with Praluent, I will be able to stop the progression of the plaque and I won’t need surgery/ stents for a very long time. For now, just keeping an eye on it (with repeat ultrasounds) every year will suffice. My leg blood flow is also good, he said. I take all the good news I can get right now. I’ll have to say, moving about, although with big pauses, slowly and still relying on others for carrying weights, makes me feel almost normal again. I am excited to plan our summer with my husband and get out of house a little. Despite all the “crunchiness” still in my chest, my heart numbers all over the map, my INR still up and down, my numbness in half of my body almost, I am lucky and grateful I am here and somewhat mobile. Looking forward to slipping little by little into a new life, closer to what I had before. I am aware that exactly what I had before is no longer possible. That life is long lost in my rear-view mirror. But the road looks wide open ahead. I’ll tread gently. Hope everyone is healthy and having a good spring so far.
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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.