Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
Tomorrow marks my 8 month aortic valversary. I have no idea where the time went! As some of you already know, I have been back to work for about 5 months of those 8, and I have built up my hours to where I work about 9-10 hour days now, including the one hour commute I have every day. If you had told me this when I woke up in the ICU, I would have thought you were crazy talking. But, taking every day one at a time, with its very own challenges, and putting one foot in front of the other, I have somehow made it to 8 months. Only by His Grace, I tell you! We, humans, are small miracles. Today was my 3 month appointment with my cardiologist and I had a followup echo, too. He did followups every 2 weeks after the surgery, then spaced them out to a month, then to three, so now, he’ll do every 3 months for a bit, and then go to 6 months where I was before the surgery, so I guess that’ll be back to normal. My On-X mechanical aortic valve is still in mild regurgitation, but I’ll take that over ‘severe’. My surgeon said at some point that it will always leak, but as long as it stays mild or even moderate to not worry about it. Since it’s a mechanical valve, the area of the valve (1.6 cm2) should not ever decrease. It was 0.4 cm2 when they called for surgery, so, again: I’ll take this! My cardiologist is much more cautious and he wants to see the regurgitation go away for good. But I’ll take what I can get. My left inferior ventricle is hypokinetic, which means it does not squeeze as hard as it should â€“ the left ventricle was the place of my heart attack, way back when I was still in the hospital, after surgery. So, that part of my heart has been slowly healing, but it’s still â€œlazyâ€, for lack of a better word. I am convinced that NOTHING about our hearts is lazy. They are industrious little machines!! My ejection fraction (which was knocked down to 55% right after the heart attack) is now between 60-65%. My blood pressure is still weird: he got a 140 over 60, and he said the gap between the two is still too large, and he’s concerned about it, although he’s not sure what makes it so, outside of the regurgitation in the valve. He, again, asked me if I am dizzy and I am not, so he will let the BP be for now. He told me to drink plenty of water and call him or go to the ER if I get dizzy when my BP is weird. I have had some weirdness breathing lately. Not sure why, but I feel like my lungs â€œforgetâ€ to breathe and I need to push them to breathe for me. Has anyone experienced this before? And not right after surgery, but after 6-7 months after the surgery? He is puzzled, but he ordered an X-ray and a pulmonary function test to figure out what it is. It happens at rest, too, but it’s more evident when I want to sprint walk, or run up a set of stairs, for instance. I feel like I am not getting enough air in my lungs and I have to make an extra effort to inflate them and release the air. It’s nothing like the chest angina that I had before the surgery, though, so I am really happy about that. Outside of all this, my left arm, which was left numb after surgery (probably from the nerves they damaged trying to pull an artery out of my chest to do the quadruple by-pass), has been feeling even worse. I am not sure if it’s worse, or just different. Only 3 fingers and my left wrist were numb, but now, my whole palm, all 5 fingers, and the wrist are numb. Also, the â€œfrozenâ€ feeling from before has been replaced with a â€œwet hand feelingâ€ now. I feel all the time, like I have cold water on my entire hand, when it’s actually bone dry. I have managed to walk up to 3 miles in a day, and do fine. But I have to stroll, not sprint. Sometimes, altitude (I do live in the Rockies) is a problem and makes me more tired, and more out of breath, even by just sitting there. Heat and altitude together have been a problem for me, this summer, but I heard from many other patients that that is something that happens to many. I want to ask someone, anyone (doctors, patients) â€¦ at which point I stop thinking about this monkey â€¦ in my chest and just be. And just live. And just not worry about â€œoh, my God, is the stuff they rewired attached properly, or will it come apart any minute?! What would I do if that happens?â€ I want to know when I can feel 100% safe again to truly go off the grid for a whole weekend, or to jump on a plane to a foreign country and not worry that I might not get the right care (or any care at all) should I need it when I land there â€¦ I guess only time will tell, and it’s going to be different for all of us. As another heart patient on this support forum I follow was saying the other day, there are no guarantees, and we have to make a judgment call and just live life to the fullest â€“ whatever that means to all of us. I tell you: even with good news from the doctor, I still worry. I still monitor myself closely. I still go through the motions of did I take my Coumadin? Did I eat too much salad today? Did my Indian food have too much turmeric in it? Did my cold meds or my allergy meds mess with my BP? And will I have another heart attack? Or did the bypasses take care of all the blocked arteries for a while? And what’s that â€œwhileâ€? Another month? Week? Year? 10 years? It would be nice to know, but boy, so ungrateful and self important, too, to want to know. My mom says â€œno one can add days to our lives. Only God.â€ To say the biggest understatement of the year: I am grateful beyond belief for the days He has given me so far. I will try, hard as it may be for this control freak, to leave the day count up to Him, and just worry about my next step. One foot in front of the other. Many GOOD days ahead, you all! Much health and hope!
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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.