A Weekend of Searching and Learning

The opening part of this blog was suggested (or reminded) to me by someone who has read this blog, a recent commenter to it. So, thank you so much for that! 

It's funny how almost every doctor I have ever seen starts or ends the appointment by saying "well, other than this (meaning FH), you're a young, healthy, person". And I just pause and frown. I mean, sure, I can have much, much more severe and grave diseases, completely debilitating ones (and FH can really get us there, too, over time), but no, I am NOT a young and healthy person! A person with up to 80% stenosis in random veins in her body , including the heart, in her 30's, is not a healthy person! A person taking a handful of pills, half of them prescription (and not birth control, either) is not a healthy person. 

Now, with my aortic valve replacement surgery coming up soon, I sorta hate that my cardiologist (whose business cards lists: Cardiology, Lipidology none the less) sometimes says the same thing, when I talk to him about my choice in what valve to use and my fear of mixing coumadin (more in a bit) with not only my current cocktail of drugs, but also with my FH condition! I wish he would take into consideration my overall body and not just focus on the most current problem, which is now my very acute stenosis in my aortic valve. 

I did push him to. I never give up easily with docs! After all, if I am here today, to tell these stories, is because I have searched and pushed and questioned and forced them to exhaust everything they know and they have access to to keep me living a semi-normal life. This is me, and I am pushy, I guess, you can say, especially when it comes to my life. 

But I digress! So, be prepared that doctors might sometimes think that you are and you look fine and dandy when you're on some meds that sorta kinda work and are still able to live a normal life or close to it. It's deceiving, I guess, because unlike other dis-figurative diseases, we look "normal" on the outside. They forget sometimes. I am also the type of person who would like to see the ugly truth and not just the silver lining. Not necessarily being negative, but just trying to be prepared for the ugly, should it come.

In the second part of this entry I wanted to give an update of what I have been doing lately, because FH and my aortic valve have been consuming me pretty fully. My cardiologist has said that the replacement valve that is perfect for me, at this time in my life, is a mechanical valve (not a natural, tissue one). I'll explain a bit about both.

The tissue one will need to be replaced again in 10-15 years, but it comes with no changes in my life style: I will be on the same meds I am on now for FH, and no others, and outside of taking antibiotics before my dentist's appointments (which I do now, anyway, because of my  broken valve), nothing else will change. 

With a mechanical valve, there is a promise that, if all goes well in the heart, you will never have to have it replaced again. That mechanical valve will outlast me, they say. Which is pretty neat, because this open heart surgery is not something I'd like to repeat, if I can help it.  

But ... because there is no such thing as a perfect solution yet, the mechanical valve must be supported by coumadin, to ensure that I don't get blood clots. The mechanical valve makes the heart/ blood prone to clotting, so an anticoagulant like coumadin must be taken daily. And coumadin is a pretty fussy drug! I know this from friends who have been on it, so you can say I know "first hand", maybe first and a half hand. What you eat can modify your INR (for a definition of why this is important, please read here), and you're banned from taking aspirin and anything that contains is, as well as most of the over the counter meds for pains and colds, etc. It also causes your bleeding to be more severe, longer and sometimes fatal, depending of where it is - intracranial or digestive bleedings can be lethal. The only good thing about it, really, outside its anti-clogging properties, is that it has been around since the 50's. Its side effects and behavior in all sorts of patients is very well known! I did not have that luxury when I started lipitor more than 16 years ago.

What is the scariest for me, still,  because I am an FH patient, is that it can also dislodge my cholesterol build up and it can block my peripheral vessels, or any vessels anywhere inside my body - brain included. Strokes are threat #1 coming from side effects of not managing coumadin closely. And strokes are not only very much a side effect of having FH, but also huge in my own family history: my dad, my grandfather (his dad) and my grandfather's brothers all have had strokes. My dad's father and uncles died from some form of them, or complications from them. We have not discussed any of this information on my last appointment, and this is largely because I didn't quite know about all the implications of coumadin, and he didn't mention them in the context of my disease.

The good part is, of course, that he ordered more tests. And all of the tests he wants are all FH-related! He will get to see in depth the status of my arteries and he will understand why I am on all the medication I am on now, and why (aspirin included). We will hopefully consider together all the risks, strokes and circulation accidents included, and then decide on the valve and also on the drug therapy going forward. At least, this is my plan, and I am praying that all emergencies will stay at bay, and I will follow through with it. For him giving me this time and ordering the tests, I am blessed! 

So, in this context, I have spent this weekend researching this coumadin thing and what it'll do to me. I am ever so fortunate to have many doctor friends. I have three old friends from high school who are doctors in three different countries (Canada, Denmark and France). Two of them are generalists, and one is a metabolic endocrinologist but her best friend is a cardiologist. They all also agreed that the best valve for me, considering my FH and considering my (middle) age is a mechanical valve. They have been extremely encouraging about coumadin and explained to me that life can be normal if managed well, and my FH can be managed alongside it, with a careful cocktail monitored by my doctors. 

Especially, they have been wonderful in explaining the tricky balance that coumadin needs to be driven by - the measurements, what affects it, what I can do about my diet - and it all boils down to: it's not more complex than a diabetic person measuring their blood sugar and either watching what they eat or supplementing with insulin. It's still scary to hear about all the bleeding accidents and about the cholesterol being dislodged and its impact on the blood vessels, but I will discuss further with my cardiologist, and maybe even my surgeon, to see what kind of new drug combo is meant for my new unique situation. 

My cholesterol levels are still not in normal ranges and I am sure they will never be. So, going forward, we'll need to address two diseases, the FH as well as the keeping of the mechanical valve happy. 

You might ask - why not just go with the bio valve?! And I am still about 30% inclined to choose that one over the mechanical one. However, like I said - re-operation seems like a huge deal! And I am worried that 10-15 years from now, my body will be older, weaker, and most likely my heart will be in worse shape from atherosclerosis alone. Do I really want to submit it to another trauma of open heart surgery to fix the valve again?!  The funny thing also, is that if they do re-open by heart, most times they replace it with a mechanical valve anyway, when you are older, but not old enough (80-90) to have a very short life expectancy.

As always, there is no ideal answer here and no freedom from drugs, tests and hospitals. As always, it's the deck of cards I was dealt. My life and diet choices have been better than most people's, but all this has never been a result of that. My only choices are: continuing to live healthy just to keep my body "otherwise healthy", and choosing doctors carefully while ever learning and adjusting to "my new normal".