Boy, it’s been an interesting year, to say the least. But then again: aren't they all?!
At the end of 2022, I lost my dad to several massive strokes (I spoke about this in my first blog this year - https://livingwithfh.blogspot.com/2023/01/new-year-new-thoughts.html) . Always the overachiever, he could not get just one stroke when his time came. Instead, he stroked in every area of his brain - small brain, large brain, and the brainstem, for safe measure ... All because of atherosclerosis due to untreated FH.
This past year’s been largely spent in the shadow of this very, very dark and sad event that I started the year with. Dad was my beacon, the guiding force in my life ever since I can remember. Without him, I have felt like someone just turned the lights off all around me and I have been feeling around, trying to figure out how to live in complete darkness.
It’s been a year of emotional un-health for all of us left behind, but mostly for my mom, for me and my sister. Our center, our patriarch is gone and the balance is off for all of us. The common belief in my family is that I am the strongest one. So, I have tried hard to be here for my sister and my mom. But even the stronger ones need strength - and I have surely felt this this year and have struggled to find it ... Trying to stay mentally afloat has been hard. Working and focusing on my physical health have been good distractors.
My physical health has not been the best, but I’ll have to say it has not been the worst in my life, either. I am grateful for this. At the end of the day, truly, I am just simply grateful for another day. A friend of mine living with lupus has said to me something like this year “doesn’t every day feel like a victory?” - and she is so right.
I am happy that I made it into the last days of 2023 - here I am adding another year to my life bouquet. Remember, I was told I was not going to make it past 18, or 25 at the most. Here I am stepping into my 49th year next year - God willing! This is definitely the best accomplishment of this year and of my life, really. The fact that I have stayed away from the ER and the ICU this year are the cherries on top!
As I am looking back and drawing the line to close out this past year (something my dad always did), I think of all the good things, but also of the let-downs and disappointments about my health this year. Worth mentioning:
- We still have not figured out if my GI issues are caused by abdominal stenosis or not. We are still investigating this with both specialists (vascular surgeons as well as a GI doctor). More tests to come. I can only hope that it is not my stenosis because a whole year is a long lease if my gut is not getting proper blood-flow.
- We have not figured out my dizzy spells. After years of my cardiologist refusing to do a scan of my brain blood vessels, I have finally gotten a vascular PA (that is right, not a surgeon, but a vascular PA working for a vascular surgeon) to admit that a head CT is past due for my advanced atherosclerosis, family history of strokes, and for my symptoms of dizziness that no other tests could elucidate. So, the test is coming up but it has not been done yet. I hope we find out something ...
- We have made almost no progress in improving my shortness of breath, despite achieving some good heart numbers this year ... (more about this below). I still get very winded when I do very light chores around the house. Climbing a hill or walking is much worse.
- My cholesterol values started climbing, despite continuing the same combination of drugs that has been beneficial in the recent past. No idea why the numbers are up, but I wonder if stress has something to do with it ... The LDL cholesterol is 144 mg/dl (up from 101 mg/dl last December) and my total cholesterol is 210 mg/dl (up from 164 mg/dl last December).
- Despite this trend, I am still waiting for my clinic to approve my Evkeeza treatment. Apparently, the insurance approved it but the bureaucracy of the clinic itself of trying to figure out how to manage a new drug as an infusion is crazy complicated. So, we are still waiting. We're also waiting for my liver to get better.
- To that point: my liver enzymes are also climbing. They have gotten as far as more than three times the upper limit (the AST and ALT values). They tell me they need to be much, much higher than these numbers for liver failure, but they are still concerned and trying to figure out what’s happening.
We have been trying for months to stabilize them and they remain high as long as I am on a statin drug. I am planning to come back with a more detailed post about this, but I am currently “playing with drugs”, as I call it - trying to turn meds on and off and see what will keep the liver levels down and get the most benefit for lowering the cholesterol too. So, until I have the full picture and until we pin down what’s causing this and what drugs I will be on going forward, I will keep the confusion to myself for now.
Right now, they have stopped the one statin that works best for me (Atorvastatin) and they are asking me to take a lower strength of a less potent statin (Pravastatin) to see what the liver is doing next. When I take no statin at all, the enzymes are normal.
We have not checked the cholesterol levels during this trial-and-error period, but logic and experience tells me the levels are high, even higher than the ones listed above. The levels I wrote above were trending higher when I was on the full-strength of all four medications I normally took for cholesterol (Lipitor, Zetia, Praluent, and Nexletol). Of course, the longer I go with higher cholesterol levels the worse it is for my vascular and heart health. But I’d rather not add liver damage to my laundry list of problems, so I am willing to try this new experiment to revamp the drug cocktail I am on.
I wondered if stress has something to do with the liver functions too, till I saw the liver enzymes come to the middle of the normal range only by stopping the Atorvastatin for 10 days!
Despite all these setbacks I have had some brighter spots this year too:
- I finally made some progress on Evkeeza with my cardiologist. The jury is, of course, still out on this newer than new drug, but I am hopeful it will do something (good) to my numbers!
- Earlier this year I barely got the doctor to pursue setting me up with this (https://livingwithfh.blogspot.com/2023/08/access-to-newer-treatment-might-not-be.html), and now I am waiting for my liver numbers to stabilize before we introduce the new drug, but the clinic is finally ready to start.
- I have managed for another year to keep my carotid stenosis at a lower than 50% amount of plaque build-up. After having had it as high as 65% in the past, having the readings come in as 50% or lower than 50% in some areas is an accomplishment. (The theory here is that Praluent has helped with stabilizing and stopping the progress of the plaque - just a theory from doctors).
- I had a xanthoma successfully removed from under my eye (https://livingwithfh.blogspot.com/2023/12/xanthoma-removal-surgery.html) . This is the fourth fat deposit (most likely caused by high cholesterol) that I have had to remove in 48 years.
- I have finally (after two years of trying different treatments) pinned down the right drug and the right dosage for my blood pressure and I have improved my BNP number (which shows the severity of your heart failure).
What is even better than seeing lower numbers of the BNP (still not normal but lower), is that I feel better, especially when I walk. In normal weather, my angina and the cramps in my extremities are much less than they were before I started Amlodipine. My BNP has come down from 692 pg/mL (end of last year) to 323 pg/mL this past September (the normal values should be under 190 pg/mL). In weather that is too hot (above 80 F or too cold (low 40’s or lower), the angina and cramps are still pretty bad ... And the shortness of breath has not improved. The blood pressure numbers are more often “normal” with only weekly spikes (as opposed to daily). I take the little bit of good news where I can.
All is not perfect. But all is not bad ... One foot in front of the other and I hope I can live another year to tell that year’s tale going forward.
From all the good that’s in my life, I am most grateful that despite all the (un)health bumps, I enjoy a full life, with good people, good food, and lots of travel and freedom to move about. Yes, being tied to a pill box, a blood pressure taker, a bi-weekly injection pen, an INR meter is not a completely care-free life, but I am never taking the freedom to move my body and drive and jump on a plane for granted. They are precious gifts!
Going to New Orleans for Thanksgiving was one of the highlights of this year - here is me, in the French Quarter on Thanksgiving night:
Other adventures included visiting three very different national parks for the first time (Saguaro National Park in Arizona, Indiana Dunes in Indiana and Jean Lafitte in Louisiana), two Frank Lloyd Wright homes (Taliesin West in Arizona and the Westcott House in Ohio), going to Europe and celebrating mom’s 70th birthday, spending a week with my nephews in the summer and taking them to their first baseball game and their first musical (Wicked), among other fun things. So looking forward to more adventures!
I wish each and every one of you reading here much health and strength. They are so important to keep us going. Whatever makes you happy or makes you whole - hold on to that and you’ll stay afloat!
Happy New Year!
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