I hope the new year is going to be truly happy and healthy for everyone who reads here and for your loved ones.
I just realized that I have not updated this blog for quite some time and that even for me (not a daily, nor even a weekly poster), 3 months is a very long time to be silent. I would make a commitment to not let that happen again but I can’t. I have learned enough from life in my almost 48 years to know that stuff happens. Life gets in the way and we get side-tracked, or simply busy with so many things that leave us knocked out at the end of every day where we can’t muster the strength to crawl into bed, much less the strength to string two sentences together and ensure they are presentable to the world.
I will open the entries for this year simply by laying out the thoughts that run through my head at this time, as I open a new page in my life.
Surely, the fact that I lost my dad (http://wander-world.blogspot.com/2022/12/dad-obit.html) in November, during the week of Thanksgiving, weighs heaviest on my mind. He died of complications from FH. He died almost exactly 4 months after his 70th birthday. He was diagnosed in his childhood, after the family already knew the history on his dad’s side. Back then, all they knew is that they all had high cholesterol, that there was no way they could manage it or cure it, and that one day, sooner or later, they would all die from strokes, heart attacks, or complications from diabetes - like the rest of their relatives who had FH. They had no treatment but even back when my grandfather was young, they were aware of FH and how it’s transmitted. I find doctors who still don’t know this today puzzling!
Although dad lived much of his life during the many years where medicine made such huge advances in the management of FH (with cholestyramine, statins, Ezetimibe widely available in Romania during most of his adult life), he refused to get treated for it. He did not take one medication for cholesterol, not ever. Not even one time. He used to insist that it’s the medication that will cause the blockages (“it takes the cholesterol away from the blood so you can’t measure it, and it moves it to the blood vessels”, he used to say, “giving you the illusion that the levels are lower”) and not the disease itself, despite many doctors telling him quite the contrary, besides me trying to convince him with the science I had learned here, in the US. Not that this would have been too incredibly helpful, but he also refused any kind of low-fat diet. His favorite foods were eggs and adding fat back in every meal! Potatoes were about the only vegetable he touched. And grapes were the only fruit, but only in the shape of wine which he made himself.
Although they believe that most likely he had heterozygous FH (his LDL was in the mid to upper 300’s), he saw complications from FH quite early in his life. In his 30s, he already had high blood pressure and he started seeing early signs of diabetes. As years went by, he started having multiple mini-strokes. Even in his early 40’s he started having strokes and although his functions were for the most part maintained, his sense of balance, his ability to make good decisions, his temper got progressively worse. We could tell something inside his head was not right.
His blood pressure got worse, and we saw some numbers in him that were unheard of. For years (10-20?) he walked the streets and drove his car with a blood pressure of 220/170 or higher. He used to joke about it, that he is superhuman and his blood vessels and his heart can handle this kind of pressure just fine.
He begrudgingly accepted to see a doctor or two, maybe every 4-5 years but he never stayed on top of the treatment they prescribed for him. He would take medication only when he could not see straight from headaches or when he was so dizzy he could not drive or sometimes not even leave the bed. He never did get on a treatment that would truly control his blood pressure or his glucose.
He didn’t take things seriously even after his dad and several of his uncles died of strokes. I used to half-joke and tell him “Dad, with this pressure, some blood vessel would one day pop in your head and then what?!” He laughed it off, saying “you don’t get it that I feel fine with a high blood pressure. Just like high cholesterol IS my normal, so is high blood pressure. Leave me be.”
And he died of not one but multiple strokes (or multiple blood vessels popped in his head).The most severe was in his brainstem which severed the connection between his brain and pretty much the rest of his body. His esophagus and stomach gave out first, then his lungs, and then he went into cardiac arrest. They revived him, but it was very hard to keep him stable because they could not control his blood pressure. When I spoke with his nurse - by that time, he was already on a ventilator -, she said she had never seen a pressure of 250/180 in her entire career. She told me he would never breathe on his own again and that she doubted that he would make it through a second resuscitation. Several hours after our conversation, he did not.
I start this year not only missing him, painfully longing for our chats, and for his humor, but with the regret (for him) that he didn’t listen in time; that he didn’t trust the science to allow himself to hang out with us a little longer. 70 is so young to me! I also start this year with a renewed energy to not only continue to take good care of myself but to also educate others, through ways available to me, to get a head-start on this disease. My thinking cap is on on what more I can do on this front.
I also start this year with new health concerns, and a new diagnosis for myself. Last year, my shortness of breath got much worse, even when my exercise routine was getting a lot more frequent and better. I started walking more, also doing yoga again regularly. We started traveling more and hiking more - so I felt like I was a lot more active than the previous pandemic years. And yet, I ran out of steam more quickly and taking a basket of laundry from my dryer to my bedroom (about 20 feet!) would render me breathless. I kept pushing and pushing for some answers with my cardiologist. He is reluctant to do any tests and he is especially against doing (angiogram) caths frequently because he is afraid with my damaged arteries, something will become dislodged and would cause even more acute problems than they are worth. My proBNP (a blood test that shows whether you have heart failure) kept going up during the year. It is normal up to 190 mg/dl. Mine went from 285 to 591 in 8 months. And my blood pressure was harder to control last year than the year before, although I was taking medication for it.
After seeing another cardiologist for a second opinion and after pushing for answers from my regular one, they both agreed that I have heart failure with preserved ejection fraction (HFpEF) which is a more rare form of heart failure, where your heart muscle becomes stiff instead of being too loose. It is also harder to diagnose, they told me. The good news is that my heart muscle is still pumping well (my ejection fraction is “preserved” which is good - it’s at or above 50 - which is why this is harder to diagnose. Usually, in heart failure, the ejection fraction is very low). I have been on medication for it for a bit over a month now and I can definitely see improvements in my blood pressure and although I still have some shortness of breath, it is not as severe as it was before the medication. So, here’s hoping we found something that works, at least for now.
I cannot even tell you how reluctant I was to take yet another drug! It is my 8th prescription medication and my 14th drug, overall (including OTCs!). I even told my cardiologist: “I am not scared of another surgery! Whatever it’s causing these new symptoms must be more disease. Send me to surgery, unclog my arteries! Whatever, but don’t just put me on another drug. I am 47! How many more drugs will we add to my list before I am in my 70’s? If I make it to my 70’s?!” Oh, it was not a pretty appointment.
But the second cardiologist (he is actually a cardiologist I used to see regularly but I moved away from that city, so now he’s too far away from me) agreed that what I need is, unfortunately, more medication. And so it goes ...
I know that a lot of folks who just now get diagnosed with FH are also reluctant to take medications. But I can tell you: I have never seen this disease work well without them. And once the complications from it start showing up (like my heart disease, dad’s diabetes, and his strokes), there is nothing but a combination of multiple therapies that works to give us even a semblance of a quality of life. It is the sad story of FH, but it is also a hopeful story. As long as we do our part, we research, we find the right team, and the right therapies, we can live our lives and be there for important moments for our families.
My next thought is about my mom. She also has FH and she is also unmedicated for it. She has aortic stenosis and advanced coronary artery disease. Her blood pressure is managed well, thank goodness, but ... she is a heavy smoker and she has lung cancer and COPD. All in all, not a good “cocktail” of diagnoses for keeping her body supplied with life-giving oxygen. Like dad, she refuses cholesterol medication and diet, although at this point in her life, and with the advanced disease that she has, I would doubt the drugs would be able to reverse any of the damage. I am not very hopeful about what this new year would continue to bring to us, I would not lie.
I usually don’t make any New-Year resolutions and I don’t go on a gym binge the first week of the year. I never have. But I used to be excited about the possibilities a new year brings! I used to look forward to much better days than the ones we leave behind. But ... I have never started a year as defeated and as alone as I feel that I am starting this year.
I am not physically alone - I am so incredibly grateful for that. I have a wonderful husband who is my cheerleader and my support system. I have a sister who although lives in another country is my rockstar example of how you manage FH well - she is our runner and all-around health guru. She is always there for me and ensures her kids live healthy lives, too, so we can teach them how to manage this thing and live fully. I have access to good drugs and good doctors (for the most part). But I cannot help but feel somewhat defeated. Like that saying about the cobbler having no shoes, I feel like I know everything there is to know about FH and yet I cannot stop it from killing my family, quite bluntly put.
My heart is heavy and my thoughts are gray. I will try to push through, as I always do, but it will be a challenging year ahead.
I hope for much, much health for all of you! In Romania, we always wish everyone “health, because it’s better than anything else.” And I truly believe that is true. We can move mountains, only if we had health.
Happy new year! Happy new beginning! - I wish you all whole-heartedly.
