Wake up Call? I Hope so!

Not sure if having a cardiology appointment the day before Christmas Eve is a good or a bad idea. If the news they share with you is good, do you really want to have a carte blanche on eating as much ham as you want when you already have heart disease? And if the news is bad, do you really want to ruin your Holidays having a confirmation about something you already know is bad enough?! Either way you look at it: I don’t necessarily recommend it.

I had a recent echocardiogram done to check the status of my aortic valve’s condition, as this is supposed to be done every 2 years and I have not done this since 2011. The doctor appointment on December 23 followed that test, to talk about the results. I just figured there is worsening in the narrowing of my aortic valve, but that maybe the progress is probably slow, because I am medicated and I eat moderately healthy. I just figured “oh, this is just another routine echocardiogram where I have some damage, but it’s manageable”.

Well, there was progress on the worsening of the aortic valve’s condition. But the progress was much more advanced than I thought. Nothing makes more sense to me than talking in numbers. The doc said a normal adult aortic valve has an area of 3 cm squared. A section through my aortic valve is 1.1 cm squared, down from 1.3 cm squared from 2011. He did say that I am a “little person” so I can get away with a smaller opening, but if it goes lower than 0.9 cm squared, he “will have to do something” – meaning a valve replacement surgery. The velocity of my blood through the valve has gone up from 2.6 m/s to 3.5 m/s – which means it’s more of a struggle for my heart to pump blood through one of the main valves. Also, my left ventricle and atrium are enlarged, which shows the strain on my heart trying to pump through a narrowed passage.It's like looking down the barrel of a gun.

If you want a visual of what my valve looks like, I found this site that pretty much shows it: http://www.heart-valve-surgery.com/heart-surgery-blog/2010/07/02/aortic-valve-size-normal/ - and just like the second picture shows it: mine is bicuspid, too. This picture pretty much rings home and wakes me up with a jolt.

So, “happy holidays” to me, I guess. I have known about my cholesterol for 33 years now. But for the first time in my life, this news really, really woke me up! As we talked specifics about valve replacement surgery, how, when, open heart vs catheter surgery, etc, I kept telling myself “this is serious now. This is the time. This is the time when things get real”.

As much as I have loved foods, all my life, for the first time ever, I really started feeling a repulsion against all things cholesterol – even ham and bacon. Especially ham and bacon. I came home and started browsing the internet and my Dr. Ornish books for new recipes. I am working on new rules, 33 years later, and I am actually excited about kicking this in the a$$! Finally. I guess nothing wakes you up more than facing 40 and hearing that your heart is giving up. I am so blessed that I have done everything I ever wanted to do till this day. So grateful that I have not yet had a heart attack or a stroke. With every beat of the heart, and every blood drop, I cannot tell you how much gratefulness flows through my old, aged, and clogged up veins for everything that I have been allowed to do so far in my life!

So, I have stayed away from pretty much all protein that is not 100% fat free so far, in the past  couple of days – quite a feat if you knew what I had in my fridge – ham, eggnog, homemade mayo in my chicken and potato salad, and so forth. No, I don’t make all these all the time – only this time of the year. But no more! 

If I don't go on a drastic diet and a drastic (for me) exercise regimen now, I am looking at open heart surgery in 3 more years, if the progress stays the same. But it could go faster, given my advancing age. I am definitely not ready for that. 

 

I am not sure what my new “diet” is, but I can tell you I have cleaned up my fridge and freezer and simply threw away everything that was not fat free, low fat, or too much fatty meat. Done. Not looking back! Not this time. Just hope and pray it’s not too late!

Grateful in the Month of Thankfulness

And here we are again, my most (food) tempting and challenging time of the year.

This year’s been challenging all around, as far as keeping an eye on what I eat. But the holidays are the worst, as you can imagine. I wish I can say eating healthy is a way of life, after 33 years of knowing about my disease. But I am an FH patient who happens to love bacon and ham and eggs and French fries.

As you also know, no, I don’t eat all that every day, but even once a week or a month makes me feel bad about myself. The latest (September) numbers are below, and I was thrilled that my triglycerides are once again normal – which always tells me as far as I can control this, I am controlling this. The rest of the numbers don’t look too bad for an FH patient, I think. And without having had a drastic procedure, like an apheresis or anything like that, I think I am handling the numbers the best I can. 

Plus, you know what the doctor said last time: the numbers are not important anymore (till next time when they become important again!). They said the presence of heart disease and atherosclerosis is what matters. Not sure how they gauge the severity of that – but there you have it.

My quality of life has been pretty poor lately, although the cholesterol numbers are OK (for me). I have either a gallbladder issue or some food sensitivity that wreaks havoc in my body – my metabolism doesn’t seem to be quite happy lately: from skin rashes, to skin peelings, to bloating, stomach pain, fatigue, no energy, you name it, I’m going through it. Some people say it’s the stress. I think it’s yeast, gluten, fat, all of these, some of these, or something else … but I am not the happiest patient, for sure!

 Plus, living in a state where doctors print internet articles to have you read them at home, rather than knowing what is wrong with you, based on your tests and symptoms, doesn’t really move things in the right direction.

With all these symptoms and apprehensions, I am marching right along into another holiday season, and later next month into my 40^th year of life. 33 years or so ago, no one believed this day would come. But here I am. A third part luck, a third part modern medicine and another third part moderation in everything that entered my mouth and in lifestyle, in general, got me here. It’s more than I ever asked for. More than anyone planned for. And for that, I am grateful!

This, That and the Other at the End of Summer

It’s been a quiet but somewhat full summer, with lots of garden work, walks in the mountains around us, city walks for special events and festivals in open air, to take in the season and the fresh foods.

I have blogged about it on my general blog, just to give you an idea about the life I live when not concerned at all with my special disease – which is, really, most days.

I also blogged recently about the most amazing endeavor at pushing myself, physically, which is not something I do often. I am usually a wimp when it comes to endurance, and submitting myself to going out of breath. But seeing this beautiful natural landscape was plenty of reason for me to throw caution to the wind and just pretend I am a “regular” 39 year old, trying to take in life, and nature.

Altitude usually makes me dizzy and clutches onto my chest. Lack of air up there causes similar symptoms, but this one hike made it all worth it, and what’s even more important: I have lived to tell the tale!

I am writing this as I am contemplating going in for my 3 month blood tests tomorrow and in another week to my 3 month follow up, and realizing: I am not too happy with my current doctor, as it is, after all … He never once, in over a year examined me. Ever. Yet, he insists on pulling out my gall bladder. My pain on the right side of my ribs is still there although I know what to avoid to keep it numb and nagging instead of raging. But I still demand one blood test or one ultrasound to prove to me my gall bladder is really shot! Which – he would not provide …

As usual, I am taking one day at a time, and getting focused on what does feel good – the mountain air and the chicken seasoned to perfection that we just roasted in the oven that we’re about to eat with raw carrots and low fat ranch.

That’s the update on the summer for now, but stay tuned for more, after the blood test and the exam in the next couple of weeks.

Till then, I am still watching my tomatoes ripe. It’s been a horrible year for a good harvest!