Blog Post from My Journey with Familial Hypercholesterolemia and Heart DiseaseI am not quite sure what happened this past Friday, but whatever it was landed me in the ER, for the first time in my life. Not many answers there, though, just a lot of â€œit’s not thatâ€, but what it â€œwasâ€ is still a mystery. On Friday, I went to work and it was planned to be just another boring day: I had a customer call, I chatted with some co-workers about how my recovery is going, and I had a team meeting. Right before the meeting, as I stood up from my desk to head to the meeting room, I fell back in my chair, with a very, very heavy head, and the very distinct feeling that I will faint. My vision was blurry and all colors in front of me turned gray. I felt like my eyes were rolling back in my head. I felt a huge head rush come up my spine, and instantly, I got a headache, in the back of my head. Then, the rush was slowly draining down through my spine, into my legs and feet, and it was dragging all my energy down with it. My breath was shallow and scarce. My chest was in huge cramps, and the left side of my ribs too. For a minute I thought my bra was too tight, and I pulled at it, but the cramps were deeper than that. My tongue was very heavy in my mouth, I had to speak very, very slowly, and my voice got very quiet â€“ which usually happens lately, when my chest is in pain. At its worst, the whole thing lasted about 5 minutes. But after that, I was extremely dizzy, and my speech was still not right. I felt like I just took 15 percocet pills and I was sooo druggy, dizzy, disoriented, and lethargic. I went to my meeting and sat in it for an hour through extreme dizziness. I did text my husband that I am not well, thinking that if I will faint, at least he’ll know to call my work and ask about me. I told a co-worker that I am not feeling well and I told him how to contact my husband, if need be. I have been dizzy before, since my surgery, but this was different. I have not felt druggy and slow, like this was going to be, ever, and never for this long. After an hour in the meeting and another half hour after it, after not being able to walk on my own feet, and having to hold on to walls and desks to find my desk again, I felt like this might be bad, after all, so I texted my husband to come and get me to my ER. I was thinking, if I need to get in touch with my cardiologist and my surgeon, I’d rather be at their hospital. So, off we went. The dizziness continued through the ride to the hospital (another half hour). By the time I made it there, it had been two hours where my chest and left side ribs were cramping, the back of my head (also left side) was in massive migraine-like pain, my voice was quiet and slow, and I was dizzy. Very, very, unstably dizzy. We went in and they put me in a room and hooked me up to machines and an IV in less than 15 minutes, I think. They did blood work, and then an EKG, a CT scan of my brain and (stenotic) carotid arteries, as well as an X-ray to rule out any fluid buildup around my heart. Everything came back normal: the heart enzymes were clear suggesting there was no heart attack, the CT scan showed no brain hemorrhage, and there was no fluid in the chest. But my heart numbers were bad. My blood pressure was yo-yo-ing between 89/40 and 140/50. If I stood up, I could not find my feet, I had to hold on to something to be stable, and my blood pressure was lowest. I didn’t know what it meant then and the ER doctor didn’t look concerned, but this number on the heart machine (the QTc number) was 520 almost the entire time I was there, and the machine was beeping the whole time, flashing â€œQTc too highâ€. I found out after ER that the normal QTc (or QT Interval) in women should not be higher than 450, and 470 is borderline high. Well, mine was 520. For a definition of what this number shows, visit this site: https://en.wikipedia.org/wiki/QT_interval The ER doctor said the number I see on the machine is not accurate, and the number on the EKG is more accurate. Well, that number for the QTc was 485, so still high. As I said, he did not seem concerned. He said I didn’t have a stroke, nor a heart attack and whatever it was, to follow up with my cardiologist for further investigation. When the QT interval is too high, I found, the symptoms are exactly what I felt, and it means your heart is severely arrhythmic. I also have arrhythmia, but I thought this was controlled by my beta-blocker, which I have taken for more than 20 years now. I guess this time my arrhythmia was more pronounced than others?! The ER staff was great and I was grateful that they did eliminate the more severe diagnoses, but I was a little bummed they still did not give me a reason for my symptoms. After waiting for the results of all the tests for about 6-7 hours, and having confirmed that it’s all clear of a â€œmajorâ€ accident, they decided to give me a liter of fluids, to see if that will make my blood pressure rise. I was also very hungry, by that time, but with the kitchen closed (at 9 PM) they just gave me a bag of chips (salt rises blood pressure too) to eat. My blood pressure started creeping slowly up, after the fluids were all in. When I finally took a walk around the ward, I felt much better. Still a little groggy, but I could walk without holding on to the walls. They sent me home, and this has not happened since (48 hours now after the first symptom on Friday). I did work (lightly) in the garden for 10-15 minutes yesterday and I started getting dizzy, again, but my usual dizzy, nothing like the syncope-like feeling I had on Friday. The next step is to follow up with my cardiologist who will have all the tests they did and see what could have caused this. So far, I am just trying to take it as easy as I can (I still have to go to work), and trying to stay overly hydrated, since the one liter of water seemed to do the trick of lifting up my blood pressure. I normally do drink a lot of water, so I am not sure if dehydration was the cause for this. Every new day is not like another one past, still. Anything can happen, I guess, and this tells me that even after 5 months I am still not â€œin the clearâ€. It also tells me that my heart is still very fragile, and that I may never feel like I will ever be truly â€œ in the clearâ€. I know they didn’t say for sure that my heart caused all this, but I have a good feeling that it was my heart. My blood pressure and the QT interval numbers, along with the chest pressure I had all tell me it’s my heart. And by now, I know. I don’t know what caused my heart to go into such a shock, so suddenly, with no change in routine, diet, medication, or any other external factors. I’ll update more when I see my cardiologist and hopefully he’ll have some answers for me. Good health to all, and as little surprises as possible.
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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.