Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
Sometimes I wonder: “What is purpose of seeking to feel better? Have I not learned that I will never ever feel like I am running on 100% capacity, firing on all cylinders?! My HoFH will continue to do damage, my heart has had a major overhaul AND a heart attack. There is never hope for really feeling truly healthy and truly at full potential, as if I were a healthy person. So what is the point of all the tests and all the interventions that doctors still want to pursue?!”
And then there is this other little voice inside my head that says “Why not?! Medicine is so much more advanced than even 10 years ago. If there are ways, and procedures, and meds, why not seek the best life possible? Why not trust a doctor or two that do believe in the silver lining?!” The trouble with that is all the risks involved, and all the doubt, that despite all the advancement, I still have an unbelievably broken body, which is irremediably damaged for good, and forever, which will never ever run at 100% capacity, even with the best care.
Let me bring this in focus: I met with the second cardiologist since I moved to NC. He struck me as somewhat of a bully, a rushed maniac with a weird passion for treating hearts and somewhat of a bull in the China shop. Definitely not a boring guy! He initially was “guessing” based on what he has heard about my history (mostly from my previous cardiologist’s notes) that the biggest problem with my heart is my AI (aortic insufficiency), caused by my (still) leaking aortic valve. Although, just like my previous cardiologist, he could not hear my AI (the leaking), he said the reason my blood pressure sometimes has “no bottom” (or a very low one) is because of the AI. He also guessed that my heart probably has fluid in it because of this and this is why my legs swell up sometimes. He also chalked the shortness of breath, the dizziness and other symptoms of fatigue and slowness to the AI as well.
He recommended a heart echo and then a nuclear stress test. After both were done, he called me and the conversation went into a completely different direction that before. He said “according to your echo, your heart is good.” That’s it! He didn’t say why, and he did not mention one word about my AI (which he believed to be severe before the echo, just based on the notes he read and on my symptoms). He said nothing about how badly my valve might be leaking, if at all, and whether there is a concern even about the leakage at all.
He, however, spoke a lot about the results of my nuclear stress test: he said when at rest, my heart gets an adequate amount of blood (and oxygen), and the vascularization is appropriate in my entire heart muscle. However, when my pulse raises to even as little as 120 (my goal was to hit 150 beats per minute, but I started getting short of breath and dizzy around 120, so they stopped the test), there is a corner in my heart (lower left ventricle to be exact) that does not receive blood at all. He said it’s either a scar from an old heart attack (my MI was localized in the same area he saw on the test), or there is a blockage there that needs to be opened up.
So, his number one concern now is to get to the bottom of this mystery: he now believes that my shortness of breath, my dizziness, and all my other symptoms of fatigue come because of this area of my heart is struggling to work without proper oxygen.
He wants to do a cath next to understand which is the cause: if the cause of the lack of blood in that area of my heart is an old scar from the MI, I am not sure what he can do for that, really. But if the cause if a blockage, he wants to put a stent in to open it up. After which, he wants me (like he said the first time he saw me) “back in rehab”, because the heart has to start working better after the blood flow is opened up. The first time he mentioned rehab to me it sounded bogus, but this makes sense. Not sure what the course of action will be if we’re not talking about stenosis but rather some other traumatic damage from my heart attack. He seems to be pretty certain that it’s a stenotic spot where maybe a bypass was not done before, or where it was done and it didn’t take. (have I mentioned that this doctor guesses a lot?! He does.)
I am, of course, not crazy about a stent, because that can also be a liability (stents can clog, too, with scar tissue). A little voice inside tells me also: “what is the point of all this? Can a stent really make you feel like a normal person? Can any procedure ever make you feel like a normal person? Of course not! So why add more side effects and worries, when you can just cope, like you have done for two years now, since surgery, and for 20+ years now since the first sign of cardiac problems?!” But not doing anything to help beaten heart (no pun intended) sounds just as crazy.
The doctor wants me to come up to the 150 bpm pulse and keep going with no symptoms for at least 15 minutes. But I have had angina before my surgery for years. Now, I have had early fatigue and shortness of breath after just a little bit of walking. Is the goal (for my age and weight, height, etc) of 150 bmp really realistic?! With everything that went on in my heart and with the constant abuse of high cholesterol (which will continue), is it really possible to hit the targets of a normal person?!
The one thing that motivates me to really look for answers and for a possible solution for getting my whole heart irrigated properly is that my symptoms kick in even without extensive exercise. They kick in after speaking for a longer period of time, or when I am nervous about a seminar I am presenting, or speaking in front of a crowd. So, simple things like these make me symptomatic. And to me symptoms means more damage to the heart, inherently. The heart cannot be healthy when it’s struggling for air like this, when I do the simplest things. And I don’t want it to quit on me when, say, I need to run across an airport dragging luggage during a short layover.
He wanted to do the cath within a week from my test (it’s passed already), but personal conflicts for both me and the doctor have postponed this till a month from now. He wants me to increase my Atenolol to ensure my pulse rate stays low. In the meantime, he told me “not to go crazy: no jogging, no hiking steep hills, no pushing heavy carts. Just keep the pulse under 100, he said, or lower, as low as I can.
I am planning to have at least one more office visit with the doc before I go in for the cath, just to ask him all the questions I still have about all the tests he has done and about his overall opinion about my heart: some things that I knew I had from before (like the AI) – how severe are they? Should we worry about them? And also: is my heart ready for a stent?! What is the maintenance we need to consider when that will be implanted? What are the steps to take if I don’t need a stent? If my heart is damaged otherwise from the MI, is there any remedy for that? If yes, what is it?! Lots of questions, still, as you can see …
I feel sometimes like trying to see this doctor is worse than trying to get approval for Praluent. You cannot get an appointment sooner than 6 months ahead. Now, because I am somewhat of an acute patient, I had to beg his office assistant (his nurse told me she cannot schedule anyone sooner than what the public calendar shows, and I have to work with his personal assistant) to schedule the appointment at least 2 months after my previous one. When we do meet, he is incredibly rushed and off to the next patient, so I have to really come prepared every time, with written questions to ensure I don’t miss anything from what I want to know.
But we do what we have to do to get our answers, don’t we?! A busy schedule, a rushed physician, or an inflexible insurance company should not stop us. Here’s to resilience!
I am very worried about what’s in my heart, and I am doubly worried that he has little time to really know what’s going on. Maybe he’s used to this rushed schedule and to him is second nature to run off from one acute case to another … We can only hope …
I wish everyone smooth rides and easy questions. Much health and a beautiful spring, everyone!
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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.