Today, we met with my cardiologist. Since my pending open heart surgery, my husband came with me as well. It was great comfort to me to see that he likes and trusts my cardiologist. Just feels good to have that extra confirmation that my confidence is not wrongly placed, too.
The doctor was amazing. He took over an hour and half of time (an eternity in today's medical world!) to answer all my questions, fears, insecurities, paranoia, and to share the pictures of my echocardiogram and dissect them with me, bit by bit.
In his early estimation, it looks like he would vote for a mechanical valve to replace my stenotic aortic valve, instead of a tissue one - just because I do not want to repeat the surgery. His vote would be for this very new (only approved since last year) type of valve called an "On-X aortic valve" (read about it here) which does not require that much coumadin (a blood thinner and anticoagulant) for the rest of my life, which is definitely a plus. The decision is not final, yet - that will come later, after speaking with the surgeon who will actually perform the surgery and after seeing the results of more tests.
Based on my long FH history and on my previous tests that showed any amount of atherosclerosis in my veins from 50 to 80%, including in my heart, the cardiologist wants to get some new results on my carotids and my heart. So, I am scheduled for a carotid ultrasound and an angiogram to check out the level of atherosclerotic damage I have so far. This will be important especially for the heart findings: if a bypass or a stent needs to be considered for my heart, this could be done at the same time as replacing the valve. This will complicate the surgery, but it would make more sense to do it all in one trauma than wait.
So, the next steps are really just more tests, more cardiologist appointments and more waiting, for a couple of months or so. I am fine with this, knowing that it's not an emergency procedure we're addressing here (yet) and I have the luxury of a couple of months to prep for it, both mentally, and work-wise, family-wise, etc.
It's January now, and we're shooting for a March surgery, potentially, if the surgeon we pick is available at that time.
In the meantime, I am trying to figure out if my mother will travel all the way from Romania to be here, with me, during my recovery time. I'd rather her not, since she has heart issues, too, and I am afraid of what all this emotion will do to her, but she insists. So, logistics, you can say.
Health to all, in the meantime!
"In the end, when we look at our life, the questions will be simple: Did I live fully? Did I love well?"
(Jack Kornfield)
"The proper function of a man is to live, not to exist." (Jack London)
Hi, I just found you blog, and let me say that it has been very informative reading your story. I am a 34 year old female who has had high cholesterol since childhood. I don't recall the numbers/levels, but it was and still to this day high. When I was 25 I went on Lipitor when my total cholesterol levels were 251. I stayed on Lipitor for a year and being the young naive gal I was, I decided to go off Lipitor and save it for when I was older. Well, guess what I'm older and wish I would have stayed on Lipitor. I had success of lowering my cholesterol to under 190 when taking it. I am at a healthy weight, don't smoke, no high blood pressure, I eat relatively healthy, and my most recent cholesterol tests came back high. I have a total cholesterol level of 267, LDL is 180 and HDL is 60. I have since been prescribed Atorvastatin 20mg daily. I'm due to have my levels checked in a couple months, so hopefully my levels decrease. I haven't been formally diagnosed with FH, but after lots of research I'm beginning to think that my high cholesterol was inherited. My Mother and Father are both 64 and living. I'm sure it's from my Moms side as she is on meds for high cholesterol, diabetes and high blood pressure. My Maternal Grandfather also had high cholesterol and diabetes. He suffered from strokes in his 60's and passed away from a massive heart attack at 75. Right now I'm just aprehensive as to what type of damage my arteries have taken these last 34 years...I know my case isn't as extreme as yours or others, but it really brings home how serious of an issue this can be.
ReplyDeleteI really wish you the best of luck with your ongoing treatments. You have a real positive attitude and that in turn is giving me hope, living with this disease. One day at a time, right?
Hi, Angela,
DeleteThank you so much for reading and for sharing your story! You are absolutely right: one day at a time. Knowledge is power, though, so good luck in finding out as much as you can on your current condition. It will help you configure your lifestyle to get the most out of life, to some extent and will help you to be ready for what's ahead.
Sure, the disease will do what it'll do, because it's hereditary, but understanding what's happening is winning half the battle, I think.
Good luck and much, much good health.
Hi! I am so thankful for your blog! I am a 27 yo female with FH. My sister, mother, maternal uncle and pretty sure maternal grandfather all have FH. It seems like no one in the world really gets what FH is, and so it is amazing to find a webpage like yours. I totally relate to struggling for peers to understand why you seemingly "diet" all the time, let alone the medical world thinking you don't really have a problem. My own doc won't prescribe me statins, as I am of child bearing age and seems unconcerned about my FH as I am otherwise "normal" in his eyes. Part of my problem, has to do with my own denial, like you had said earlier. You can't see this disease and so it is easy to ignore. Good luck with your heart surgery!!!! I look forward to reading more of your posts.
ReplyDeleteThank you so much for your comment!
DeleteAnd thank you so much for giving me an idea about my next post - the struggle when the doctors see me as 'healthy'. Very frustrating.
If you do want to have children, maybe you can plan them, the best you can - kind of just like birth control - just come off statins when you're ready?! Just an idea, of course.
I never wanted children and I started with every doctor this way - swearing up and down that I won't concieve and that I will terminate the pregnancy if I were to get pregnant. Fortunately, I didn't have to do that, but I was ready for it. In no way did I want children, and that was of course a very personal choice.
Good luck with the doctors and the treatment and do seek a second opinion.
Be well!