I chose this title for this post because I find a lot of times in the media that people don't believe that the damage done by cholesterol on our bodies is real. Some people believe that this is all a plot by the drug companies to sell drugs, and that elevated cholesterol does no real damage to your body. My own father says "there is no such thing as normal cholesterol. Every one of us has his/ her 'normal'. And mine is 340! " - this is after having mild strokes before he was 60, and having complete stenosis in his peripheral vessels from living with FH all of his life!
Today was my heart angiogram, where they wanted to find out "what else is wrong with my heart" so they can fix it in the upcoming open heart surgery. The results of this test were not really reassuring - and all the damage they found is probably all caused by the cholesterol deposits in my blood vessels in my heart and the calcification in my valves.
We already knew I am going to have heart surgery for my aortic valve. They also found out that my mitral valve is leaking, so it will either need reconstruction or replacement. Then, I have a significant (more than 90%) narrowing of my left anterior descending artery (LAD artery) which will require a bypass, as well as moving the surgery from a month away to more like 2 weeks away (according to the cardiologist). Then, I also have an enlarged aorta, which might need a graft.
I met with both the cardiologist (who did the angiogram) as well as with the surgeon today. The surgeon would like to get a CT scan of my chest and carotids next, to understand exactly the severity of each of these afflictions and to come up with a surgery plan. There will be surgery, we know that for sure, but we're not sure when and how fast we need to move yet (the surgeon did not give me the 2 week away deadline). What exactly will need to be repaired/ redone/ implanted or left alone will remain to be seen yet. More tests on Monday and then appointment with the surgeon to come with a plan and a surgery date.
I am bummed, really. I probably had a "cleaner" life than the average person, with a strict diet, lots of meds and constant visits to the doctors with lots of tests done to see what's going on. And yet, I am on the verge of a massive surgery. I want to kick this in the gut, and I will use my whole strength to, but this looks much worse than I ever thought. I pray and I hope for the best, and I trust my doctors fully.
I am never a person who gets lost into the "why"-s and "what if"-s ... because I don't choose to waste my energy this way. I just know more now than I did yesterday and I take one day at a time and try to make decisions that are lasting and will give me comfort and a working life.
I'll keep everyone posted on what's around the corner as I know more.
Much health!
"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)
Friday, January 29, 2016
Thursday, January 28, 2016
Cath Day. Again.
I remember the first time I scheduled an angiogram (15 years ago, I was
25). I was so scared of the procedure, I called in an hour before the
appointment and I told them I am not coming in. I rescheduled it 5 years
after that and eventually got one done. Now, with OHS looming ahead, I
am not scared at all for tomorrow's procedure, considering.
Tomorrow, I have my heart angiogram/ catherization planned. 6.30 AM bright and early at the hospital. The cardiologist said it will be just investigative, because of my upcoming surgery: he wants to understand what all needs to be done but he will leave it to the surgeon to actually fix it. He also said he might introduce me to the surgeon tomorrow, if the surgeon happens to be around. I am looking forward to that, for sure.
The nurse called today with instructions for tomorrow. I appreciated the reminder, as the doctor was confused last time I saw him about which day and which month we were doing this in. So, it's good to know we're on the same page for a more or less important procedure.
I am a little nervous about the possible findings, I hope we just find out that the valve is the only thing that needs mending, but not nervous about the procedure and the recovery time this weekend. I hope I am right on this one.
Hope everyone is well and has a good start of the weekend!
More, tomorrow, I hope!
Tomorrow, I have my heart angiogram/ catherization planned. 6.30 AM bright and early at the hospital. The cardiologist said it will be just investigative, because of my upcoming surgery: he wants to understand what all needs to be done but he will leave it to the surgeon to actually fix it. He also said he might introduce me to the surgeon tomorrow, if the surgeon happens to be around. I am looking forward to that, for sure.
The nurse called today with instructions for tomorrow. I appreciated the reminder, as the doctor was confused last time I saw him about which day and which month we were doing this in. So, it's good to know we're on the same page for a more or less important procedure.
I am a little nervous about the possible findings, I hope we just find out that the valve is the only thing that needs mending, but not nervous about the procedure and the recovery time this weekend. I hope I am right on this one.
Hope everyone is well and has a good start of the weekend!
More, tomorrow, I hope!
Monday, January 25, 2016
Pre-Angiogram Appointment
There is a continuous series of appointments that would precede my upcoming open heart surgery, and this is pretty much what I have been busy with lately. Today, I had an appointment with my cardiologist to follow up on some of these tests and order yet more, before my upcoming angiogram this Friday.
About a week ago, I had an ultrasound of my carotids done. Because of my FH, I have developed plaque buildup in several arteries and veins of my body and one of the more significant areas is my carotid. They've done this ultrasound about every two years for many years now.
Right now, it seems that I am at about 70% blockage on my common right carotid, and almost a complete blockage on my right external carotid. I am told that we have one common carotid going from our chest towards our brain, on either side of our head (those are the 2 common carotids). Then, they each split into the external carotid (goes to your face) and the internal carotid (goes to your brain).
Although my blockages are not affecting my internal carotids at this time, my cardiologist is still concerned about the size of the blockages and he doesn't want to "walk into open heart surgery before a vascular surgeon looks at this" (in his words). So, he will meet with the vascular surgeon and he will call me with what he recommends. He said he "needs to get this resolved before we proceed with surgery". Any blockage, especially around a vital organ like the brain can be dangerous with the surgery and the coumadin treatment coming up, he said. Especially if we do go with the ON-X valve and I'll require coumadin for a lifetime.
After this, he and I went over all my questions I was mentioning about (http://livingwithfh.blogspot.com/2016/01/the-long-list-of-questions.html) a while back. He answered most of them, and some of them I am leaving for the surgeon.
He, then, listened to my heart again (routine) and I told him about my cough that would not go away. He sent me to get a chest X-ray today, so I did that, as well as he sent me to get blood drawn in preparation for the Friday angiogram.
And that was that.
He did throw a kink in the road, when he mentioned another surgeon's name rather than the one he's been recommending for a month now. We 'argued' a bit back and forth, I told him lots of people said the first surgeon he picked is the best one, and I have gotten comfortable with the thought of the first one. And he gave in and said "Ok, we'll keep the first one, they're both equal in skills". Not 100% sure what changed his mind, but of course now I am paranoid that I picked the wrong one. We'll see after we actually meet with the first one, which should be either this Friday, while I am in the hospital for my test, or shortly after this week. I suppose I can change my mind and go to the other one if the first meet-and-greet with the first surgeon is a total flop.
That's about all for today. The test and appointment chain continue.
He was also a bit confused about the day of my angiogram, because he originally scheduled it for February. I called his scheduling nurse and she moved it up for me (she said she could and he's free) to January, but somehow, he didn't get that memo. He called the hospital himself and straightened his schedule up, and we're good for Friday.
Anyway, the reason I bring this up is that literally anything can happen. Schedules can change. Referrals can change, tests can be ordered last minute. I think the important lesson here is that you must be flexible. All in all, these people are paid to make your life better and keep you comfortable. It's kinda easy to forget this when they make simple mistakes like these. But I try to be flexible and a little less harsh on them. It's not easy for my over-perfectionist self, but I try. It can't be good for my heart to stress over every detail, I guess... Like I said: it's not easy to let go ...
About a week ago, I had an ultrasound of my carotids done. Because of my FH, I have developed plaque buildup in several arteries and veins of my body and one of the more significant areas is my carotid. They've done this ultrasound about every two years for many years now.
Right now, it seems that I am at about 70% blockage on my common right carotid, and almost a complete blockage on my right external carotid. I am told that we have one common carotid going from our chest towards our brain, on either side of our head (those are the 2 common carotids). Then, they each split into the external carotid (goes to your face) and the internal carotid (goes to your brain).
Although my blockages are not affecting my internal carotids at this time, my cardiologist is still concerned about the size of the blockages and he doesn't want to "walk into open heart surgery before a vascular surgeon looks at this" (in his words). So, he will meet with the vascular surgeon and he will call me with what he recommends. He said he "needs to get this resolved before we proceed with surgery". Any blockage, especially around a vital organ like the brain can be dangerous with the surgery and the coumadin treatment coming up, he said. Especially if we do go with the ON-X valve and I'll require coumadin for a lifetime.
After this, he and I went over all my questions I was mentioning about (http://livingwithfh.blogspot.com/2016/01/the-long-list-of-questions.html) a while back. He answered most of them, and some of them I am leaving for the surgeon.
He, then, listened to my heart again (routine) and I told him about my cough that would not go away. He sent me to get a chest X-ray today, so I did that, as well as he sent me to get blood drawn in preparation for the Friday angiogram.
And that was that.
He did throw a kink in the road, when he mentioned another surgeon's name rather than the one he's been recommending for a month now. We 'argued' a bit back and forth, I told him lots of people said the first surgeon he picked is the best one, and I have gotten comfortable with the thought of the first one. And he gave in and said "Ok, we'll keep the first one, they're both equal in skills". Not 100% sure what changed his mind, but of course now I am paranoid that I picked the wrong one. We'll see after we actually meet with the first one, which should be either this Friday, while I am in the hospital for my test, or shortly after this week. I suppose I can change my mind and go to the other one if the first meet-and-greet with the first surgeon is a total flop.
That's about all for today. The test and appointment chain continue.
He was also a bit confused about the day of my angiogram, because he originally scheduled it for February. I called his scheduling nurse and she moved it up for me (she said she could and he's free) to January, but somehow, he didn't get that memo. He called the hospital himself and straightened his schedule up, and we're good for Friday.
Anyway, the reason I bring this up is that literally anything can happen. Schedules can change. Referrals can change, tests can be ordered last minute. I think the important lesson here is that you must be flexible. All in all, these people are paid to make your life better and keep you comfortable. It's kinda easy to forget this when they make simple mistakes like these. But I try to be flexible and a little less harsh on them. It's not easy for my over-perfectionist self, but I try. It can't be good for my heart to stress over every detail, I guess... Like I said: it's not easy to let go ...
Sunday, January 24, 2016
Who Knew?!
About a year or so ago (http://livingwithfh.blogspot.com/2015/01/what-to-eat.html), I started on this vegan (except some wild fish) diet, due to severe, painful and itchy welts all over my body and stomach discomfort. The symptoms don't disappear 100% if I am on such a diet, but they are definitely subdued.
Since then, I have seen a lot of doctors, allergists, GI docs, skin doctors, here and back in Romania to try to really diagnose this correctly. Nothing so far.
This winter, I finally went to a dermatologist here (the one I saw was in Romania and she had no time, because of my short stay, to run any tests) for some other concern, but I did run my welts and stomach issue troubles by him. The welts come and go and they are not something on my body at all times, but I have pictures of them on my phone, just for this kind of appointments. So, this guy looked at the pictures very intrigued. I told him what I have done so far (antihistamines - they don't work, vegan diet - works a little but the welts do come back), and he ordered every test known to man: all the blood tests you can think of, a breath test, to make sure H-pilori is not back, a complete stool test (for parasites), you name it.
Everything, and I mean everything came back "clean". He was puzzled.
He, then, as an afterthought, ordered a vitamin D level (blood test, again). I started laughing because my vitamin D has always been very low and I had stopped taking the supplements when my regular doctor told me to stop all medicine except what I need to take "for my life" (cholesterol and heart pills), because my welts and stomach problems could be from medicine.
So, he checked and my level is what he called "dangerously low": it is 11, and the normal LOW is 30 (up to 100 for a high). So, he put me on a massive dose of vitamin D. I told him I am not taking the 50 000 IU / week dose, as that dries my skin and mouth too much and gives me other symptoms I don't want, so he said: "OK, fine, take 7 000 IU/ day, and that'll absorb better anyway". So, now, I am taking that, as dubious as I was the first time he told me this will cure my welts and stomach issues. He encouraged me to "look this up and check him". And that, I did. Vitamin D has apparently been seen to alleviate and even cure symptoms related to chronic urticaria, which is the diagnosis he eventually gave me.
What I didn't realize is how important vitamin D is not only for our skin, immune system and bones, but also for our heart health and vascular health, too. There are tons of studies and articles from reputed health institutions that speak about this. I also found this article (http://www.medicalnewstoday.com/articles/161618.php) that explains the way statins affect your body's absorption of vitamin D from the sun. Basically, people on statins get no vitamin D from the sun, as the meds block the process of the cholesterol actually turning sun rays into vitamin D. These people, it is suggested, need to be on a vitamin D regimen.
I had no clue about this, and none of my doctors have ever mentioned the connection, although I have always had low vitamin D levels and I have been on statins for the past 17 years of my life.
Of course, it's just one article and as for the urticaria, it's just one doctor to prescribe me this treatment. We don't know, yet, if it will work, but I will report back either way. He also told me that I'll have to be on this regimen for 6 month to a year to actually turn my vitamin D levels completely around. So, we wait and see, for now.
I have also found studies that mention that the level of calcium in your blood will increase while on high doses of vitamin D (not good), as well as studies that mention that our blood vessels have vitamin D receptors in them which will contribute to keeping the walls of the vessels flexible and blocking the accumulation of the plaque.
Just like with everything: research, read, and do ask your doctors, and eventually make the decision you think best for you, with the information you have on hand at the time.
Since then, I have seen a lot of doctors, allergists, GI docs, skin doctors, here and back in Romania to try to really diagnose this correctly. Nothing so far.
This winter, I finally went to a dermatologist here (the one I saw was in Romania and she had no time, because of my short stay, to run any tests) for some other concern, but I did run my welts and stomach issue troubles by him. The welts come and go and they are not something on my body at all times, but I have pictures of them on my phone, just for this kind of appointments. So, this guy looked at the pictures very intrigued. I told him what I have done so far (antihistamines - they don't work, vegan diet - works a little but the welts do come back), and he ordered every test known to man: all the blood tests you can think of, a breath test, to make sure H-pilori is not back, a complete stool test (for parasites), you name it.
Everything, and I mean everything came back "clean". He was puzzled.
He, then, as an afterthought, ordered a vitamin D level (blood test, again). I started laughing because my vitamin D has always been very low and I had stopped taking the supplements when my regular doctor told me to stop all medicine except what I need to take "for my life" (cholesterol and heart pills), because my welts and stomach problems could be from medicine.
So, he checked and my level is what he called "dangerously low": it is 11, and the normal LOW is 30 (up to 100 for a high). So, he put me on a massive dose of vitamin D. I told him I am not taking the 50 000 IU / week dose, as that dries my skin and mouth too much and gives me other symptoms I don't want, so he said: "OK, fine, take 7 000 IU/ day, and that'll absorb better anyway". So, now, I am taking that, as dubious as I was the first time he told me this will cure my welts and stomach issues. He encouraged me to "look this up and check him". And that, I did. Vitamin D has apparently been seen to alleviate and even cure symptoms related to chronic urticaria, which is the diagnosis he eventually gave me.
What I didn't realize is how important vitamin D is not only for our skin, immune system and bones, but also for our heart health and vascular health, too. There are tons of studies and articles from reputed health institutions that speak about this. I also found this article (http://www.medicalnewstoday.com/articles/161618.php) that explains the way statins affect your body's absorption of vitamin D from the sun. Basically, people on statins get no vitamin D from the sun, as the meds block the process of the cholesterol actually turning sun rays into vitamin D. These people, it is suggested, need to be on a vitamin D regimen.
I had no clue about this, and none of my doctors have ever mentioned the connection, although I have always had low vitamin D levels and I have been on statins for the past 17 years of my life.
Of course, it's just one article and as for the urticaria, it's just one doctor to prescribe me this treatment. We don't know, yet, if it will work, but I will report back either way. He also told me that I'll have to be on this regimen for 6 month to a year to actually turn my vitamin D levels completely around. So, we wait and see, for now.
I have also found studies that mention that the level of calcium in your blood will increase while on high doses of vitamin D (not good), as well as studies that mention that our blood vessels have vitamin D receptors in them which will contribute to keeping the walls of the vessels flexible and blocking the accumulation of the plaque.
Just like with everything: research, read, and do ask your doctors, and eventually make the decision you think best for you, with the information you have on hand at the time.
Thursday, January 21, 2016
The Importance of Connectedness
Ever since I found out about my heart surgery, I have been wanting to connect with people like me. I have been craving to read, hear, see stories of other people that have gone through my journey now. It educates me, and lifts me up. Survival is possible. So, I am moving on, one day at a time.
I mentioned before I have a friend at work that has had his aortic valve replaced in his 30's and he's been a gift from God to have close and to be able to poll for questions, ideas, opinions, advice.
Online, I have found two forums where people are so kind, so giving, so open that you can learn so much from - not only in terms of how to prepare for this, but also in terms of strength, love, compassion and kindness. Despite all the muck in today's world, there are good people out there...
They say that if you stay open, and honest, and connected, and involved, the recovery, the "coming back" will be easier and smoother, all things considered, of course. It really does take a village, you know, to hold us all together in our scare and hour of loneliness.
The two forums that have been my favorite so far are:
http://www.heart-valve-surgery.com (I joined this one, purely because their sign up system is a breeze)
and
http://www.valvereplacement.org/forums/forum
I mentioned before I have a friend at work that has had his aortic valve replaced in his 30's and he's been a gift from God to have close and to be able to poll for questions, ideas, opinions, advice.
Online, I have found two forums where people are so kind, so giving, so open that you can learn so much from - not only in terms of how to prepare for this, but also in terms of strength, love, compassion and kindness. Despite all the muck in today's world, there are good people out there...
They say that if you stay open, and honest, and connected, and involved, the recovery, the "coming back" will be easier and smoother, all things considered, of course. It really does take a village, you know, to hold us all together in our scare and hour of loneliness.
The two forums that have been my favorite so far are:
http://www.heart-valve-surgery.com (I joined this one, purely because their sign up system is a breeze)
and
http://www.valvereplacement.org/forums/forum
Sunday, January 17, 2016
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.
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.
Sunday, January 10, 2016
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".
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".
Tuesday, January 5, 2016
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!
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!
Subscribe to:
Posts (Atom)