Beginning of the Year

Happy New Year, everyone! I think we all put more meaning into this wish this year than any other new year before.

It’s been a while, but not many things have happened.

On the FH front, I am still on the same therapy as I have been since early last year – since the Bempedoic Acid was approved.

Because my joints have been more painful than ever, and because my muscles are tender lately, we (the cardiologist and I) stopped the Bempedoic Acid in the fall (as described here: http://livingwithfh.blogspot.com/2020/10/trying-to-achieve-best-results-with.html) for about a month to see if the pain would stop. It didn’t, really. So, he added it back to my usual cocktail (Lipitor + Zetia + Praluent, at this time). Because we stopped that for a month, the levels for the LDL and Total Cholesterol went up at the last test, as you can see below. Interestingly enough, my HDL is now almost normal, something of a rarity for me – usually that is abnormally low.

Another interesting finding this time is that my Lipotrotein (a) value, which is supposed to be a constant, almost doubled. I will come back with another post about that one.

The cardiologist, along with my PCP, do recommend that I should stop the Lipitor for a month to see if this will stop the joint pain. They are both convinced that it will, at which point I will need to decide whether I want to be on it or not. I would rather not experiment with this, as long as I can take the pain, which for right now, is sufferable. As long as my liver and kidney levels, as well as the levels of CK are normal (and they are, as we continue to monitor them every 3-4 months), I am determined to keep the cholesterol therapy as aggressive as possible to keep my arteries healthy. CK indicates whether there is any muscle damage which would show up in an elevated CK in your blood. So far, this level has been normal for me. So, I am muddling right on through, joint and muscle discomfort or not.

The cardiologist agreed to watch the numbers for these three areas and let me handle the pain. I do not take anything additional for pain. I do find that exercise actually helps with it. It does hurt very much to move, but after a sprint-y lengthy walk or an hour of yoga, when I am at rest, my joints do feel more mobile and less painful. If I go even a day without exercising, my joints are stiff and painful.

I did buy a standing desk for work and I stand as much as possible during meetings, which I have many, sometimes up to 6 a day. This helps as well, as it gives my body more range of motion than when it was just sitting for 8-10 hours every day. I noticed that trying to keep my inflammation down also helps. I do have an mostly plant-based diet which helps keep the inflammation down as well, and to that I have added more avocado, more fiber, and turmeric into my every day meals. This seems to help keep the inflammation down as well. So, here’s hoping …  

On the heart front, I am still fighting with drugs and playing around with them and different strengths to see what the best combination is for keeping my blood pressure down. I am still not at a point where I can say with confidence that we have gotten my blood pressure under control.

The one drug that really helped for me, Amlodipine, causes extreme sensitivity in my gums, as well as makes them bleed. As any heart patient knows, but especially those with a mechanical valve like me, we need the best possible oral hygiene to avoid infections of the heart. So, living with bleeding gums was non-negotiable for me. Losartan is another drug he put me on for blood pressure, but it’s not really working all by itself. So, now he has me on a combination of Losartan and a very small (child) dose of Amlodipine. The gums are fine, the numbers look better but not in the normal range yet. Or at least not on my left arm.

FH throws another kink in the blood pressure values: because of the different levels of stenosis I have in my arteries, my blood pressure in my left arm is much higher than in my right. For an example, see the table below – these are levels in the current month. Apparently, the different numbers on the two arms  is normal for everyone, and the big difference you see between the arms is “normal” for people with atherosclerosis.

Shrugging. Just another measurement that you have to get used to not being “by the book” when cholesterol wreaked havoc in your body, I guess …

I am not really happy with the current drug arrangement for the blood pressure for two reasons: the numbers are still on the high side, the symptoms are still there (chest pressure, calf and neck cramps with exercise) and I would rather not add two (instead of one) medications to my overall cocktail of 12 drugs or so a day (http://livingwithfh.blogspot.com/2016/07/my-current-drug-regimen-and-diet.html). So far, he wants to continue this regimen for another month (till the end of February, I think) and then we’ll meet to reassess.

I feel like we're always guessing and always trying to figure out what regimen is the best to keep. There is no certainty in anything and I truly try to make the decisions that seem to be the less harmful to me and allow me to have the best quality of life. They might not be the best, but they seem the best from where I am sitting. 

Aside from all these technicalities, and all the side effects and pain I have mentioned above, life is generally good. Outside of the “normal” restrictions we have in place as a family for Covid19, I have no restrictions that prevent me from doing everything I want to do. I work, I walk, I do yoga, I do all my  house chores, we take short weekend road trips and hike, and otherwise, I lead a normal life. Or whatever you call normal for me.

Sure, making sure all the drugs are taken on time, that the Praluent shot is done on schedule, the blood pressure measured every day or so, the INR is measured and reported to the clinic once a week - but these are all part of my routine for life. So, I think more than the bugging joint pain, more than the let-down of the blood pressure being weird or having to take two extra drugs to get the numbers to look a little better, the one thing I feel most of is gratitude. For still being alive and for still being mobile. For everything.

I started out this journey at 8 and they told me I won’t see 25. With a bit of luck and the grace of God, I will be 46 this year. I am so grateful, it renders me speechless.

I sincerely wish everyone much health in the new year. May you know as little loss as possible, if any,  and only peace, health, and love.