Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
A few weeks ago something really bizarre happened. On a Wednesday afternoon, my husband and I went for our usual bi-weekly or so walk in our neighborhood. We have what I call a “kick-a$$” (for me) hill right outside our driveway, about a mile long, round trip. This makes for good cardio. I have a landmark on the side of the road (a bright red fire hydrant) that is almost at the top of this hill about where my symptoms kick in: I start really losing my breath, choking up, my left arm gets numb, and the cramps in my legs start pulling at my muscles really tightly. These symptoms happen about 90% of the time when I do this routine walk, especially when I go at that hill fast. I normally do go fast because my cardiologist is of the belief that we really need to push our heart into cardio mode to grow new, healthy arteries. As my old ones are bad, I figured this is a good enough reason, but I almost always pay for it with these symptoms. They do ease up after I am done with the hill and walk back down, or wander around the neighborhood on more flat grounds.
I (sort of) digress, though. So, on this Wednesday, my symptoms start kicking in at around my landmark and they get worse as I walk. We make it to the top of the hill where there is a flat part of our walk, and where usually the symptoms kind of plateau or calm down. But on this one day, they were actually getting worse, even after was done climbing. On top of the usual cramps and numbness in my left arm and shoulder blade, I was now getting this incredibly sharp pain in my chest: like a huge eagle or owl was sitting on my chest digging their huge talons into my heart, or somewhere where my heart should be, somewhere behind my sternum.
We came back home and the chest claw was not letting up. My breathing was labored and I felt like I had SO MUCH acid reflux in my chest – I remembered very clearly that when I had my heart attack after my surgery, I thought I had acid reflux, with my chest full of fluid and that I was not able to burp it. That same feeling was coming back that day. I felt like I swallowed a basketball-sized water balloon and it was pushing into my lungs and chest walls or something.
Back home, after I rested for a bit, I took my blood pressure and it was 150/58 with a pulse of 58. I thought: well, something really did happen or my heart really did work out, since my pressure is clearly up! I kept feeling weak all evening, with the watery chest persisting and the claw coming and going. Because of all these new symptoms I did not even think to take a Nitroglycerin. I was just in awe: what could cause all this and what was happening?!
Next day, my weakness and full chest continued. My blood pressure kept climbing up all throughout the next day: 149/62 in the morning, 189/81 at lunch (what?!), 141/50 in the evening. All of these while at rest. I did not walk anymore. I was just around the house all day, doing light chores, but all these numbers and what I felt were scaring me. On Thursday morning, I jumped on the scale in my bathroom, as I usually do about 2-3 times a month. It read 120 lbs! This was 6 lbs more than the previous time that could not have been longer than a week and a half or two before! The feeling of bloating and puffiness in my core body was still there and I could not help but wonder if this was all fluid build-up. I had not changed my diet in any way. I was not lazier than normal, so what could possibly make me gain 6 lbs in that short of a time?!
I have a pretty good relationship with my cardiologist and thought to text him a few times, but I also had an appointment scheduled with him the following week, so I thought I’d wait. I figured he’d send me to the ER if I texted him at that point and as much as that I figured out myself, but I did not want to deal with the ER. Not yet. I was hoping that I won’t get light headed or dizzy and as long as I didn’t feel that, I was going to wait this one out. So, I did.
On Friday, we had a weekend trip planned to Virginia to visit relatives and the symptoms continued during our drive up there. I took my bp monitor with me and kept records of it, because I wanted to show my cardiologist what was happening. The high blood pressure continued throughout the weekend. On Friday night my legs were so swollen, you could not see the bones in my ankles anymore. My feet could not fit the clogs I was wearing except for the tips of my toes. On Saturday, we went to browse a Barnes & Noble store and I was walking around skimming through books and my chest claw came on again and I felt like I was going to fall down – it knocked the breath right outta me. I had to sit down. I was not dizzy, but very weak.
I continued to just take it easy and enjoyed our day up there – my husband got to reconnect with relatives he had not seen in 35+ years, so I was so wanting us to just enjoy our time and make new memories.
We came down on Sunday afternoon and I drove the whole way (about three and a half hours), just to take my mind off of this mess. I was absolutely exhausted when we made it back. I took a shower and napped. My blood pressure was still hanging out at 169/65 after my nap. My ears were bright red. I was afraid to jump on the scale again. My sleep was poor, as well: I just felt like suffocating when I laid down and I could hear my heart beating so strongly and my valve clicking louder than normal. I have a stethoscope, and I listed to my heart for new murmurs or swooshy sounds, but I could not hear anything new.
Next Monday, I woke up and I did check my weight again: it had dropped to 116! Just like that: from Thursday to Monday (in 4 days!) I had lost 4 lbs! I wish this would happen every week, believe me, but I knew this could not be just fat loss. Along with this mysterious weight loss, my bp was 115/50 that morning. The claw in my chest was gone and so was the full, watery feeling. All seemed to be back to normal. Just. Like. That.
On Wednesday I went in for a scheduled heart echo and for an appointment with my cardiologist. I explained all these to him and he has no idea what happened! He doesn’t want to go on guessing. He examined me, and heard no new sounds, either, and no sign of fluid. He did say that it does sound like I had fluid backed up but it was obvious to him it was not still a problem, as my leg swelling went down and my blood pressure too. He did check my C-reactive protein levels which could indicate an inflammation, I guess, and that came back normal. He just advised that next time I should take an extra-half of Atenolol (which I take daily) and see if the heart palpitations and the bp would go down. If that doesn’t happen, to call him or go to the ER. Of course.
The echo he ordered was just my yearly routine echo. It came back with almost no changes from the previous year, although it still shows disease, of course: there is annular calcification of my mitral valve, but the valve is fully mobile. My left atrium is moderately enlarged. My ventricle is normal and it squeezes strongly, the doctor said. My ejection fraction is still sitting at 55% which has been unchanged since my surgery, three years ago. I remember when it was 70%, even the year before my heart surgery, but I don’t think I will ever see that number again! He also said that by looking at the pictures, he thinks my aortic insufficiency has improved and it is not as bad as before. I was kind of wondering about that, because the gap between my blood pressure readings has gotten smaller. It’s still not what you would expect (the diastolic is still lower than what you want), but it has definitely closed up a bit. A good report, all things considered.
He also ordered an ABI test (or ankle-brachial index test – https://www.webmd.com/heart-disease/ankle-brachial-test#1) to determine if there is vascular disease in my legs, since they always get cramped when I walk on inclines or very fast. This test “indicated no significant arterial occlusive disease at rest and after exercise bilaterally.” They did make me walk on a treadmill, for the exercise, with an incline of 10 and a speed of 1.5 for 5 minutes. When I walk on the treadmill and when I do get symptoms, I usually walk with no incline and I reach a speed of about 3 mph. I usually get cramps about 10-15 minutes into the exercise, so during their test I did not get symptomatic at all. Not sure how to interpret this, but the cardiologist assured me that if there were any disease it would have been evident even in the case of a light, short walk with a steep incline like in the test they performed.
I wish I understood more about what happened that odd week. Since then, my blood pressure has stayed within normal ranges, or what normal is for me. I am back to my usual routine and I did go on my usual walk several times now, and the hill has not caused a problem yet. I am glad that it all appears to be cleared up now and I am back to my normal, but a nagging thought in the back of my head still tugs at me: was it a heart attack? What was that?! I guess, for now, I am grateful I am still here and back to my normal routine and looking forward to more normal days. Sometimes, this is plenty enough!
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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.