I am in somewhat disbelief that I am even writing this entry, but it bears saying that after a lifetime of managing my FH and my heart disease, I pretty much feel, at this time, like I am starting over. And this is not the first time I have felt this way. And I want folks to know that sometimes, this is our "normal".
But let me elaborate: the reason that I feel this way this time is because I am looking, yet again, for a new cardiologist. I have changed cardiologists about six times so far in my life. The first two, I had to change because I moved - one time across the world and the second time across the country. The third time, I had to switch them because mine retired. Then, the fourth time, I needed another one, because yet again, I moved across the country, in the opposite direction. The fifth and now sixth times have been more or less unlucky: I managed for these last two times to find cardiologists that do not understand and do not know how to manage my heart condition in the context of FH.
The fifth cardiologist I had could not read an echo. I kid you not! She did an echo after asking me "what kind of tests are you used to getting to monitor your condition?" I had to tell her that all cardiologists before her did a heart echo every year. So, she did that. Then, it took almost a month for her to call me with the results. She, in fact, did not call: I called her to follow up and she confessed that she was waiting for "a more senior cardiologist to help her read my echo because she wanted to make sure she is giving me the right information." The funny part was that the echo was almost normal!
The sixth cardiologist I have now, I have seen for about four years. We have had a love-hate relationship. Some days I think he gets it (he has been the first cardiologist to never have any issues getting my medicine pre-approved with the insurance which is amazing, for those of you who are on such medicines like PCSK9 inhibitors or Nexletol) But most days I think he is so far out of touch that it's not correctable. Lately, he has sent me to a vascular specialist because he was tired of me pressing him for information about the state of my arteries. He said "let me manage your heart, go to a vascular specialist for the rest of the arteries." So I did.
Now, after having symptoms of dizziness, and more severe than what is "normal" for me shortness of breath with minimal effort or none, coupled with a persistent dry cough for the past year or more, he finally (again, after me insisting for months) did a blood test that is supposed to detect whether you have heart failure (the test is called NT pro-BNP - https://en.wikipedia.org/wiki/N-terminal_prohormone_of_brain_natriuretic_peptide). The normal value, according to his lab is less than 190 pg/ml. Mine was 285 pg/ml and he called it "mildly elevated and of no concern." After looking up the values and the diagnosis myself, I asked him how come it's not of concern since it's almost 100 units higher than normal. He said he'd repeat the test because he believes it to be a fluke. What basis for that?! None was given.
So, he repeated it. The second time, the value came back as 434 pg/ml and this time he acknowledged it was high. He did order a stress test and an echo to evaluate the heart (finally!).
In the meantime, though, he wants me to add a "new" medication (his word) to my 10+ drug list - a medication from the class of SGLT2 inhibitors (https://en.wikipedia.org/wiki/SGLT2_inhibitor). I asked him what this is for and he said "it's for diabetes but it has cardiovascular benefits." If you read about these drugs, they are clearly prescribed for type 2 diabetes. I was incredibly disheartened to hear this because there is absolutely nothing wrong with my sugar metabolism. My glucose has never been high and I have never been suspected of diabetes. Why would I take something that would make my sugar lower than normal, I don't know, but it doesn't sound right ... I know he is the doctor, but when you doubt something, you owe it to yourself at least to check with another opinion, if not respectfully step away.
Overall, my cardiologist seems to prescribe and treat heart disease the way he treats older patients: with lots of drugs (this is not the first drug I have refused to take from him), while he has no knowledge of what is new or in research for FH (and he admitted to this before, as I documented it here). So, he might know what he is doing, but not for an FH patient.
You would think that after so many years, I would know right away what kind of doctor I need to have to manage my condition. But even with lots of years of experience and with incredible luck before to find the perfect doctors for me, I still struggle to find the right person every once in a while.
For the newer people who are just now diagnosed: I want to tell you that this is a long journey and you'll be constantly fighting for your health: weather it will be to find the right specialist, or the doctor who really gets the disease, or to find a drug that works for you, you'll never have a time where you can just coast and let others manage your health for you. You'll need to stay vigilant and advocate for yourself.
Like one of the FH Advocates, Patricia Young, so astutely says (https://thefhfoundation.org/patricias-story): no matter how well your doctors might think know the disease or a condition you might get as a result of its complications, you'll always be smarter and know more, because you'll learn to have "a Ph.D. in you". You'll know your body and your disease like no one else, and oftentimes know more than any doctors. And it's OK to speak up.
And now, after treading water with my current cardiologist for four years, I am trying to move on and find a new one. It's hard to know where to go from here. Some require referrals and not sure if my PCP will offer referrals for doctors outside her medical system, but I am asking nonetheless. But whatever I'll need to do, I am ready to do it, because time cannot wait when you have heart disease or FH that keeps adding on to its complications.
So, yes - it's disheartening and discouraging but what is even more discouraging is doing nothing.
Onward, to hopefully better doctors!
Much health, everyone.
