Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
Why, hello, everyone! You must have thought that I fell into a black hole lately, for not updating the blog for some time now. The reason of my temporary absence is that I have moved recently. Big, cross-country move. We moved from Utah to North Carolina at the end of October. And we have been busy with everything that such a move entails: selling a house, buying a house, figuring out how to work remote, looking for a job (for my husband), registering cars in a new state, registering us as new inhabitants of the new state – you catch the drift. Busy, busy, busy, for the past several months. Because I have the body that I have, I had to worry about many additional things in the moving process that had nothing to do with the bureaucracy of the move or its stress: while traveling across the US and not being able to cook for myself, will I be able to find enough food to live on for days with just fast food places as options? Will my INR get all messed up because my routine and my weather will change drastically? Not to mention my stress level. Will I be able to keep my Praluent cold enough in the camper’s fridge, to be able to take it every two weeks, as scheduled? Will I find a new doctor/ cardiologist/ lipidologist, and how soon after I move?! And ultimately: will my heart be able to live through all the stress, the worry and the amount of work necessary for a move like this?! Some of these questions have already been answered. And if this trip has taught me anything, it has taught me that I can fake being a ‘normal’ human being pretty well. Outside of the two weeks I took off from work, for the actual move, work has not missed a beat. The availability of the internet is pretty amazing in this day and age. The Praluent did fine in the camper, and for a while it was not even in the fridge: it was in its original Styrofoam box with its original icee for 3-4 days and it stayed cold. There was one dose due while we were on the road, and I took it in the camper. Now, if I were to travel abroad, I am not too sure how I would keep it cold for a while, but cross-country in a camper (in a car, too) would not be a problem. I have read recently that the requirement that it must stay refrigerated has dropped, so you might want to inquire into that option, too. My INR was 2.1, which is within my range, at one point when I did check it on the way. Once we arrived at the destination, it was fine, too, till I had to be on antibiotics for yet another UTI, and then it went to 2.9. This value is high for me, but way within normal range for many mechanical valve patients, so not too-too scary. And that’s the other thing I worry about while I travel: the UTIs which seem to always be connected to that! I have mentioned this before, I think, here: I have had up to 5-6 UTIs this year. The last one I just got over was accompanied by fever and chills and it was definitely the worst one yet. I have no idea why I have them so often, but they always seem to come sometime after or during a trip. And they make me crazy! I am thinking that either the infection will go to my heart (especially when I get fever and chills), or that the antibiotic will either kill my liver with everything else that I am taking alongside it or will make my blood so thin I would bleed to no end! These are real fears and real thoughts that keep me up at night. But somehow, the sun has risen every morning, in the East, like you would expect, and I am still here. Life is a miracle, I tell you that much! Once I moved, one of my previous caretakers (a lipid specialist and nutritionist) that I used to visit last time I lived in North Carolina recommended a new cardiologist close to my new home town. So, I have been able to actually see a cardiologist since I moved, even before I acquired a primary care doctor. The cardiologist did a cholesterol and a liver test, and the new numbers are included below. As you can see, my LDL is stubbornly hanging at 145 – and she said that in her opinion “the LDL can never be too low” and she wants it way, way, way under that number, and even lower than what the recommended range is. Of course I feel like therapy-wise they are throwing the kitchen sink at me, so what else could I possibly take?! She is scheduling me to see an endocrinologist who is also a lipid specialist. So, we will see what else he recommends. In addition to the regular cholesterol levels, she also tested my apolipoprotein B (https://en.wikipedia.org/wiki/Apolipoprotein_B) which is another indicator for LDL cholesterol. In the materials I have found online, it mentions that the normal ranges are within 40 and 125 mg/dl. My cardiologist’s nurse emailed me that what they consider a normal range is between 54 and 133. Mine is 135. From what I have read, apolipoprotein B is supposed to go down to normal levels with statins. I never got it tested before now, so I am not sure what my sans statin value is, but apparently, even with a high dose of statins, mine is still high. I suppose that’s understandable. This new cardiologist being new to me, she is, like many doctors before her, pretty freaked out about trying to manage all this and my heart disease on top of it. So, she is deciding to have me see the endocrinologist lipid specialist for the cholesterol management, while she will manage my heart disease. I was spoiled before, with a lipid specialist and a lipid research geek for my cardiologist (all in one person), but we will have to see how this approach will work going forward. All these years of testing my levels I have to say they are always new and always deja-vu for me, at the same time … I almost never expect my cholesterol levels to be anything but high and not to wow everyone. But one thing that is a surprise from time to time is my liver levels. They are about 90% of the time normal, but every once in a while they jump! Usually, they jump when someone is switching out my statin, but this time, there was no change in my cholesterol/ heart medication, and my ALT jumped to 102 (normal up to 54 U/L) and my AST is 54 (normal up to 41 U/L). When my liver enzymes jump, I get very scared, because everything I take has a potential of damaging the liver, and I know that the damage is irreversible. This time, there was no change in my medication at all, and I really don’t know what caused them to be high (especially the ALT). But this is why I continue to always check my liver, every 3-4 months, because you just never know when it decides to tell me that it cannot carry all these drugs’ weight any longer. I just think it is so important to understand how these drugs we are on affect our entire body, not just the disease we are trying to manage with them. My cardiologist’s guess is that it’s because the antibiotics that I took for my UTI for two weeks before I did the liver test. So, for now, she is repeating the test in a week to see if the enzymes go down. If not, we will start looking elsewhere for causes. I will keep you posted!
To view original post visit: https://livingwithfh.blogspot.com/2017/12/a-big-move-new-start-managing-same.html
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.