The Long List of Questions

I've been spending tons of time researching this valve replacement surgery online. I am ever so grateful for the wealth of information we have out there, today, but I am also very confused and very torn. 

To recap: my cardiologist strongly recommends my aortic valve be replaced by a mechanical valve, and most specifically by an On-X valve. I won't attach links here, as I trust you all can find them online, by just googling the terms you find in this blog. My various doctor friends strongly recommend this valve as well. The research online also mentions that "for my age group", the On-X valve is the best solution right now. 

I have one friend who has had the bio valve for five years now, and he's mostly a fan of that, since there is no medication management after it, virtually. Another friend of my husband's has had the On-X one, and he manages that quite well. Lots of input!

I personally am leaning heavier towards the prospect of the On-X valve, too, from what I have read, except for the blood thinners. But my husband has a friend who has been on coumadin for this valve (he was a very early recipient of the On-X, before it was even approved by the FDA) for 18 years, and he explained to me life on coumadin. It does not sound much worse than a diabetic patient monitoring their insulin. In case of a bleeding episode, however, is much worse than that, of course. But I try not to live my life for what might be, you know ... Sure, I might fall and bump my head and bleed from my brain, but then again, I might not. 

Anywhoo, I digress. The management of it is not so daunting to me, as it is the interaction of blood thinners with either my current medications or with my existent risk factors, for clotting, stroke and heart attack. 

I spent lots of hours and days researching, signing up for chat groups, etc, to hear first hand stories of patients like me. And I find everything very helpful and fascinating - and I am endlessly grateful for people who take the time to share their story. It's greatly helpful and inspiring for all of us who will follow into the same footsteps one day. 

Each journey will be unique, no doubt, as we are all so different, but some things we will all share - the fears and the questions we are faced with will bear some similarities. 

I have also spent most of the past month jotting down my questions for my surgeon and my cardiologist. Some of them are questions, some of them are mostly just asking for confirmations that what I have read is not quack. 

In my list "for the docs", I started outlining my current health: part of my jitters is the fact that my heart, my circulation has already been so damaged by my FH. I am already at an increased risk for heart attack and strokes, because of my various stenoses, and this surgery as well as the life after it, scares me double with all that to consider in the picture. 

So, the first part of my list is "this is who I am today. Do you (doctors) perceive this state to be a risk factor during and after surgery, and how do you plan on monitoring this?". 

Then, I gave them my list of current  meds and cholesterol numbers - to show that even on high levels of statins + zetia + OTC my FH is not peachy. 

And then, they will get a list of all my questions - screen shot below. Note that this is a very personal list - this will just reflect my questions, my fears, my unique case of what can/ cannot affect my own health - they are very specific to me. 

However, I trust that if you read them, and one day you'll be found in the same situation as me now, they'll trigger questions you might not think about at the time. They came from my research - everything you'll see noted is something that someone else either experienced or some health sites mentioned as a possibility - I just need to run some of these by my doctors and find out what they think about all the ones that I am nervous about. After all, I am leaving them in charge of not only my heart, but my well-being and life "after".

In my list for them, I have also included a comparative list for all the three kinds of valves: tissue valve, traditional mechanical (like St. Jude's) and On-X valve. I used this list online as a guide for my questions there. It's pretty clear and easy to understand. I do get it, that it's on the site of the people who make the On-X valve, but it's a good guide for questions and I want some confirmations from the surgeon's experience to see if these guidelines check out. 

This is my list of questions. In bold are the most important ones to me. The one highlighted in gray is of utmost importance to me. 

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". 

More Tests

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! 

And Now We Wait ...

I am sure that  the title could repeat itself 100 times in the days to come. After a diagnosis comes, there are long days of waiting, for insurance approvals, medical opinions to factor in, planning on the patient's part - and waiting and planning are, really, a luxury! Some people don't have that choice. Especially, with heart disease, most people get rushed in and under the knife to stay alive. So, this is really, just good. 

We repeated the echo-cardiogram on Christmas Eve, and the readings are right: my aortic velocity is 4.86 m/s (it's normal lower than 2.5 m/s - see this article for values), and the aortic opening is 0.5 cm square. So, all measurements point to one thing only: severe aortic stenosis which requires the aortic valve to be replaced. I guess I could cheat fate for only 40 years before I succumb to heart surgery. I will try my darnest not to "succumb", however, but to come out of it stronger and better. 

Right now, I made an appointment just with my cardiologist, to understand better of how soon we need to do something about this, and possibly to understand what kind of valve it's fitting for me to get. He will also recommend the heart surgeon on that appointment. 

I am a conundrum of questions and doubts, as there are no clear "winning" options for a stress free and doctor free and worry free valve: if we go with a tissue (animal or human) valve, it will require re-operation withinin 10-15 years, if we go with a mechanical (artificial) valve, it will require coumadin daily, which has a ton of side effects and many other health concerns because of heavy bleeding. Not something to take lightly. I am reading and researching all I can, but will know more on the 5th, when the next appointment is. I hope.

It's been a blessing to have some time off during the holidays, just to spend it with my husband and to really wrap our heads around this, but it's also given me much time to worry about things too - which is, of course, premature. 

I hope you all walk into the new year healthy, happy and if not, at least with a heart full of hope that miracles are possible! 

Happy 2016 to all! 

Back in the Roller Coaster

I have been meaning to post an update on my numbers but I keep waiting for more results to come, so I can make a complete post. But, this FH life is sometimes just a string of waiting moments; waiting for the results to come, and for the other shoe to drop, to know what the next step is to take. 

In the beginning of this month, I went in for my routine lipid and liver levels blood tests. The liver was fine, and the lipid levels were actually lower than in July - below - which is always a plus. The only thing I did differently is adding back the zetia to my drug cocktail. My new cardiologist seems to believe this definitely will help with the numbers. 

 

As you know, any improvement is a great thing in this world, so I was grateful for this. The happiness was short lived, however, as my annual echocardiogram was due also - where they are monitoring the regress of my stenotic aortic valve. The results from this test just came out this week and it's not looking good. There is a sudden drop in the area of the valve (from 1.1 cm2 to 0.5 cm2) and a sudden increase of the velocity of the blood through it (from 3.5 m/s to 4.86 m/s) - which my doctor considers to be "a huge jump". My angina symptoms are not worsened, however, and that's the only saving grace at this point. 

Usually, any aortic area less than 0.9 cm2 is considered dangerous and it begs for open heart surgery to replace the leaking/ broken valve. An idea which  I have been "playing with" for the past couple of days. It's living me speechless and numb at this point. 

I called for a repeat of the test, which the doctor was onboard with, so this is to be done tomorrow. And then, we wait and try to make a decision. 

Surely, not what I had in mind for food-for-thought material for Christmas and open hear surgery was definitely not on the menu for the new year. I'll try to stay positive, but it's hard, as the numbers and the statistics you read are pretty telling and grim. And, alas, there is no more "alternative" way around this - no more diets, meds, or lifestyle changes that can fix a broken valve. 

I hope everyone's load is light this Holiday season and into the new year! Be grateful for today. 

Crock Pot Goodness

I have been thinking about making something in the crock pot, as the season for it has come. I have never done anything without meat in it, so it took a while for me to wrap my head around what exactly would go well in there. The thing about it is - not all veggies are alike, and some of them are more tender than others. Some cook faster than others, so it was hard to come up with a recipe for a while now. 

So today, bed ridden with a cold and hacking up a lung, I just threw everything my weary imagination came up with into the thing and made some soup. Here's the recipe, if you want to try it - it came out pretty delicious:

Kale (mine was blanched and frozen)
Two cans of Northern beans, not drained
Baby carrots
Baby fingerling potatoes
Cherry tomatoes
Sweet potato and garden burgers, minced in the food processor, cooked with chopped onions - to add towards the last hour of cooking. 
Garlic powder, salt and pepper. 

It cooked for about 4 hours and the soup was bursting with flavor. I think in the crock pot the flavor lasts longer than in the regular pot, because there is less evaporation, and the ingredients preserve their shape and texture longer, as they cook. It was delicious! Just what the doctor ordered for this sick chest of mine. 

You want to make sure the onions are really soft and cooked through before putting them in the pot. Cooking onions or garlic in the crock pot makes the whole thing taste very metal-like, for some reason. I learned that the hard way, trust me! 

An Accidental Weekend, Some Cravings and a Leftover Aside

I sometimes worry I won't be able to find anything to eat when I go out, especially with company. You always have to "explain" yourself (because they ask, not because you volunteer) and you can hear the eye rolls as you go over the way you eat. But you know what?! Even in Godforsaken Utah, things are much, much easier anymore. And plus, you need to stay a little bit creative, too ...

I had a "team activity" at work on Friday, where they took us out to get cooking lessons. The way it works: we cook the food, after some instructions from a chef, and then, we eat it. On the menu?! A full menu called "Mediterranean madness": chicken kebabs, tabbouleh salad, tzatziki sauce, pita bread and baklava. I cooked the tabbouleh and the rest of my team cooked various other dishes, and then we all shared what we cooked.  I had a pita bread stuffed with tabbouleh and that was more than plenty.

What goes into tabbouleh: bulgur (a grain), tomatoes, cucumbers, parsley, green onions, lemon juice, a bit of olive oil. The pita bread was made from wheat flour, and no dairy, eggs or soy products. I definitely recommend the wheat flour over the regular white for the pita, because the nuttiness of the wheat gives extra flavor to your dish.

Tabbouleh salad stuffed pita bread.

On Saturday, my husband and I went to one of the local chain sandwich places, one of those joints that makes a big deal out of using all organic and local ingredients. I was still a little nervous that something might be contaminated by some food that might make me sick, break out, and feel guilty about what I am eating (because of the fats). I ordered a minestrone soup, which was loaded with mushrooms, oddly enough, and it was delicious. In Italian tradition, though, it did have a bit too much olive oil floating on the top, though.

Then, I ordered the hummus plate, which was plenty delicious! I did not eat all of the pita, as it, too, had some extra fat I could taste. What can you do?! You win some, you lose some, right?!     
                                            

Hummus plate and minestrone soup at Blue Lemon

 
For Sunday, I was craving two things (I guess, continuing with my Mediterranean theme from Friday): pasta and baba ghanoush. So, I roasted an eggplant in the oven, and after draining it, I threw it in the food processor with some white onions, salt, pepper and just a teaspoon and a half of vegan mayo (Earth Balance brand, which I can only find at Whole Foods around here), and made this delicious spread. My husband had made some vegan bread, and the combo between the smoky eggplant and the fresh bread was amazingly tasty. Just what the craving asked for!

Baba ghanoush and fresh home made bread

 
For the pasta, I made a creamy tomato sauce, using rice milk, fresh cherry heirloom tomatoes and lots of garlic, fresh parsley, onion and dill, simmered on low for about an hour. I mixed the sauce with the cooked rotinis, fresh sweet peppers and frozen sweet peas and threw everything in the oven for about an hour. That was our dinner. 

                                  
                                    Baked pasta, veggies and creamy tomato sauce 
 
One little "leftover" note I forgot to blog about: we had lots of leftovers from our Thanksgiving dinner. And I usually love to re-invent the leftovers into some other dish, so we won't eat the same ol', same ol' dish all over again. My favorite re-invention this year was also the easiest one to make and so delicious: with the leftover mashed potatoes, I dumped some canned mushrooms into a Pyrex dish with the potatoes, mixed in some vegan cheddar cheese and lots of crushed garlic, and put it in the oven for the mixture to "get happy" for about 45 minutes. I just ate it with home made bread, just for extra comfort starchiness. 

 

Mashed potatoes and mushrooms casserole