Introduction

[Guest]

New to this forum! So I wanted to introduce myself (long post ahead):

I am a 29 year old white female with mild aortic stenosis (as of 3 years ago). Heart problems run on my Mom's Mom's side of the family, specifically my Mom had aortic stenosis & my cousin has had 4 heart surgeries before the age of 22 (aortic & pulmonary valve replacement, coronary bypass, etc). No genetic conditions have been found that might give us some clues as to why us 3 have developed these issues so early in life.

In 2011, my Mom died at a young age from complications due to heart valve replacement surgery. In short, the autopsy & Doctors explained her heart was simply too weak to withstand the surgery. Cause of death: aortic stenosis, sepsis, shock. No other abnormalities noted in the report.

In 2013 I met with a cardiologist & got my first echocardiogram done. We went on to get a TEE to get a closer look. In layman's terms I was told my aortic valve is shaped a bit funny, likely congenital. If not congenital, then I'm just some sort of anomaly lol. But at that time, my heart was still strong. I do have a murmur though & was diagnosed w/ mild aortic stenosis. As of now (October 2016) I still have no symptoms (in fact, in 2014 I ran/walked a 5k w/ no issues). However, I understand that as the stenosis progresses, my heart will weaken, but I still may not necessarily exhibit symptoms.

It's been 3 years since my last check-up, which I know is a gamble. I'll be totally honest, I was simply too scared to go back. I also did not like my Mom's cardiologist (whom I saw). Very cold, terrible bedside manner. However, I finally bit the bullet & found a new Doctor at a different, higher-rated hospital.

Yesterday I met with the new cardiologist & was very pleased w/ the service I received. The doctor explained things well & was very empathetic. Of course, I started crying during my appointment (she held my hand). It's really tough knowing you'll have to have the same surgery your Mother ultimately died from. It might be important to note I do suffer from extreme anxiety as a result of her death & am currently undergoing treatment (therapy, medication, & regular visits with a nutritionist and my PCP). I know chronic stress can cause all sorts of nasty problems, both mentally & physically.

We went over mine & my family's history. She basically confirmed everything I already knew. That being, there is no proven way to reverse, stop, or slow the progression of aortic stenosis. Everything I'm doing now is on point (i.e. healthy diet w/ supplements, keeping my blood panel in check, exercise, stress management). But other than that, all I can do is wait (& pray). She's referring me to one of her colleagues (a cardiologist who specializes in congenital issues in adults). I will see both of them on a regular basis, i.e. one or the other every 6 months. I'm set up to have my next echocardiogram done on Monday. Then I meet w/ the other cardiologist on 11/17. At that point, she'll then be able to tell me where we will we go from there. I'm not going to lie, I'm pretty frightened thinking the stenosis may have progressed significantly in the last 3 years. I really don't want to have open-heart surgery in the next few months. The trick though, the doctor agrees, is we need to time it right. Not too soon or too late when my heart has weakened. Side note: we did discuss the less invasive aortic valve replacement surgery option, & I am not a candidate.

We also discussed a lot of my other concerns: limited physical support (I do have a wonderful fiancé, but no siblings & my Father isn't emotionally capable of handling it), work/insurance (I will carry the insurance for me/my fiancé), where surgery will take place (she recommended I get multiple opinions, & it's likely I'll be sent to somewhere like the Cleveland Clinic), etc.

So the point of my post? I don't really know, other than wanting to say hello & (hopefully) find a community for support through my journey ahead.

 

[Paleowoman]

Hi - welcome to the forum ! Sounds like you have a lot of stress with your mother dying of complications during heart surgery knowing that you will undergo surgery at some point in the future. it's good you've found a more empathic cardiologist, that's so important. It's also very difficult to know the progression of aortic stenosis leading up to aortic valve replacement. A heart murmur was first heard with me when I was 25 and happened to be at the doc with a chest infection. The cardiologist I was referred to thought it was bicuspid aortic valve, but echocardiograms in those days weren't very good so he couldn't quite see it. Fast forward to when I was 53 and I was referred to another cardiologist. Echos better then and that showed that I had moderate stenosis from the bicuspid arotic valve. From then on I had annual echos and the stenosis progressed each year until I was 60 when it suddenly became severe so I was referred for surgery. I never had any symptoms ever. Surgery was done specifically before I had any symptoms as symptoms can mean that the heart is getting damaged. So its great you will be having regular checks from now on, and great you're looking after your health. The better your overall health, the better for your heart and the better for you when you do one day have surgery !

 

[dick0236]

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So the point of my post? I don't really know, other than wanting to say hello & (hopefully) find a community for support through my journey ahead.

Hi TLC2U. You have found a community of support here. Read all you can in the "older posts" and post any questions you have.......chances are that someone has "been there, done that". At 29 this is very scary.....I was 31 and am still doing very well.....but there is no way that anyone could have made me believe that I'd be OK this long.

 

[Nusb22]

Hello, your story is similar to mine. My mother also died from aortic stenosis, also she had rheumatic fever as a child, so other valve were damaged. I have three bothers and a sister, knowing it was genetic, we all went to get checked. Well, I am the only one that inherited aortic stenosis. I get quarterly check ups, doctor told "me" I'll probably need surgery within the next year or two. But it hasn't worsened over the past year.
With me, I felt I was lucky to be diagnosed, other than the aortic valve, everything else looks great. Blood pressure and cholesterol ect.. within range. (and have been a non-smoker all my life.)
I know it can be stressful, it was for me too at first, then convinced myself I was glad it was found. Great strides have been made concerning the heart, I'm not "to" worried about surgery.

 

[Trinalovescats]

At 29,I understand where your coming from.

I myself am 31,I had Mitral Valve Replacement and Tricuspid Repair on May 3,2016.I too was scared but I knew I was in good hands.I was misdiagnosed with Asthma in November 2015.

My advice to you is,yes it's scary to make a big decision but you'll be glad you went through it.The months leading up to my surgery were rough.I had a hard time walking,I had a cough that worried my parents and my gums were bleeding daily.That went away after surgery.

this is a wonderful community glad I found it.Dont he afraid to ask around and look at the other threads...

 

[Zoltania]

With respect to physical support, if your fiance is willing to help (and if he isn't, he needs a new title) then you're in good shape. Friends, neighbors, and acquaintances can also be surprisingly helpful, especially if you can ask them for specific things like giving you a ride to the grocery store. You can search the archives for discussions of how people who live alone have managed their recoveries. So don't worry!

 

[LondonAndy]

Oh wow, with your Mom's history no wonder you are so anxious. I am not sure what I can say to help, but I did not know I had aortic stenosis until suddenly one day (like someone had flicked a switch) I couldn't walk more than about 200 yards without getting so out of breath I had to stop and rest. So the first i knew was when it was severe. At least you know of the problem coming and are able to prepare for it, though as I commented on another post recently, I sometimes wonder if that is a more stressful position to be in!

To be honest it sounds as if you are in a pretty good position in terms of being ready for it, and hopefully with the modern valves and the ability to self-monitor your INR once you have the valve (make sure you push for that) your outcome will be good. Waiting is surely the hardest part. Keep doing what you are doing, and I can't think of anything better to say than 'try not to worry' - you are so right about stress being bad in its own right.

 

[Warrick]

I can totally understand about being scared having the same surgery as your mother,

my father had an AVR (he's still alive) from rhematic fever when I was 8 years old and then was declared medically unfit to ever work again a few years later which turned him even more into an abusive manic depressive, so we spent my teenage years on the invalids benefit living in poverty.

so having this surgery I kind of thought I'm headed down the same road as him, reminded me of if you remember in Star Wars when Luke Skywalker cuts off Darth Vaders mechanical hand and then looks down at his own mechanical hand thinking I'm just like him.

But I walk my own path , and what I can see surgery from then to now is like chalk and cheese.

Your doctor is totally right about the timing, my Dad was left till he was out of breath walking 10 meters before his surgery so the irreversable damage was already done

 

[Guest]

Thank you for the wonderful amount of support! Seriously, you have no idea how much of a relief it is to have people (even through the web) to talk to about my experiences & fears! I'll try to remember to post periodic updates, i.e. after my next echo & visit w/ the cardiologist. Excuse the multiple replies, but I'd like to respond to each user.

 

[Guest]

You're right about the symptoms, I don't want to let it get to that point. My Mother did have symptoms, i.e. couldn't walk around the yard without getting winded, fatigued quite often (despite working from home), etc. My Mother also did not exercise or eat healthy, so I believe that contributed not only to the progression of the stenosis, but the overall weakening of her heart. It's my goal to keep my body & mind as healthy as possible so when the time comes, it's able to withstand such an invasive procedure.

Hi - welcome to the forum ! Sounds like you have a lot of stress with your mother dying of complications during heart surgery knowing that you will undergo surgery at some point in the future. it's good you've found a more empathic cardiologist, that's so important. It's also very difficult to know the progression of aortic stenosis leading up to aortic valve replacement. A heart murmur was first heard with me when I was 25 and happened to be at the doc with a chest infection. The cardiologist I was referred to thought it was bicuspid aortic valve, but echocardiograms in those days weren't very good so he couldn't quite see it. Fast forward to when I was 53 and I was referred to another cardiologist. Echos better then and that showed that I had moderate stenosis from the bicuspid arotic valve. From then on I had annual echos and the stenosis progressed each year until I was 60 when it suddenly became severe so I was referred for surgery. I never had any symptoms ever. Surgery was done specifically before I had any symptoms as symptoms can mean that the heart is getting damaged. So its great you will be having regular checks from now on, and great you're looking after your health. The better your overall health, the better for your heart and the better for you when you do one day have surgery !

 

[Guest]

I read your profile.. very inspiring. Replacement at 31 (back in the 60s & medicine has advanced since then) & you're now 80?! You give me a lot of hope (I mean that in the best of ways)!

Hi TLC2U. You have found a community of support here. Read all you can in the "older posts" and post any questions you have.......chances are that someone has "been there, done that". At 29 this is very scary.....I was 31 and am still doing very well.....but there is no way that anyone could have made me believe that I'd be OK this long.

 

[Guest]

My BP has always been good & now my cholesterol is good (thanks to some major diet changes, no medicine). I'm very proud of myself. And also never smoked, rarely drink. Thank you for reminding me that it's good my stenosis was found. It's hard not to think 'ignorance is bliss', but in this case I'll be able to take a pro-active approach to my health & will go into surgery knowing I did everything I could from my end.

Hello, your story is similar to mine. My mother also died from aortic stenosis, also she had rheumatic fever as a child, so other valve were damaged. I have three bothers and a sister, knowing it was genetic, we all went to get checked. Well, I am the only one that inherited aortic stenosis. I get quarterly check ups, doctor told "me" I'll probably need surgery within the next year or two. But it hasn't worsened over the past year.
With me, I felt I was lucky to be diagnosed, other than the aortic valve, everything else looks great. Blood pressure and cholesterol ect.. within range. (and have been a non-smoker all my life.)
I know it can be stressful, it was for me too at first, then convinced myself I was glad it was found. Great strides have been made concerning the heart, I'm not "to" worried about surgery.

 

[Guest]

May 3rd.. not too long ago. And close to my age. May I ask how you fared in recovery? Both immediately after surgery & beyond? Honestly, recovery sounds frightening, i.e. waking up with a tube in my throat, etc. I've had 3 surgeries before (feet & teeth), but the actual hospital part wasn't bad. I didn't even stay overnight.

At 29,I understand where your coming from.

I myself am 31,I had Mitral Valve Replacement and Tricuspid Repair on May 3,2016.I too was scared but I knew I was in good hands.I was misdiagnosed with Asthma in November 2015.

My advice to you is,yes it's scary to make a big decision but you'll be glad you went through it.The months leading up to my surgery were rough.I had a hard time walking,I had a cough that worried my parents and my gums were bleeding daily.That went away after surgery.

this is a wonderful community glad I found it.Dont he afraid to ask around and look at the other threads...

 

[Guest]

I feel confident my fiance will support me. I think he'll struggle in the actual hospital (the smell quite literally makes him faint), but I watched him care for both his grandpa & grandma without complaint, for 3 years, until both passed away. However, the actual amount of support is limited. He'll do his very best, but he still needs to run his business as it's our livelihood. I have no other family in the area, all live 5 hours away. As do most of my friends. I will have a MIL/FIL/SIL by then. My cardiologist also said we can set up some sort of home-health-type care to help w/ recovery when my fiance needs to be away. I will definitely search the forums like you suggested.

With respect to physical support, if your fiance is willing to help (and if he isn't, he needs a new title) then you're in good shape. Friends, neighbors, and acquaintances can also be surprisingly helpful, especially if you can ask them for specific things like giving you a ride to the grocery store. You can search the archives for discussions of how people who live alone have managed their recoveries. So don't worry!

 

[Guest]

What is INR? I will Google search it as well.

Oh wow, with your Mom's history no wonder you are so anxious. I am not sure what I can say to help, but I did not know I had aortic stenosis until suddenly one day (like someone had flicked a switch) I couldn't walk more than about 200 yards without getting so out of breath I had to stop and rest. So the first i knew was when it was severe. At least you know of the problem coming and are able to prepare for it, though as I commented on another post recently, I sometimes wonder if that is a more stressful position to be in!

To be honest it sounds as if you are in a pretty good position in terms of being ready for it, and hopefully with the modern valves and the ability to self-monitor your INR once you have the valve (make sure you push for that) your outcome will be good. Waiting is surely the hardest part. Keep doing what you are doing, and I can't think of anything better to say than 'try not to worry' - you are so right about stress being bad in its own right.

 

[Guest]

I try to remind myself of that every day. I am not my Mother (as similar as I am to her!). My body will respond differently when it's time for surgery.

I can totally understand about being scared having the same surgery as your mother,

my father had an AVR (he's still alive) from rhematic fever when I was 8 years old and then was declared medically unfit to ever work again a few years later which turned him even more into an abusive manic depressive, so we spent my teenage years on the invalids benefit living in poverty.

so having this surgery I kind of thought I'm headed down the same road as him, reminded me of if you remember in Star Wars when Luke Skywalker cuts off Darth Vaders mechanical hand and then looks down at his own mechanical hand thinking I'm just like him.

But I walk my own path , and what I can see surgery from then to now is like chalk and cheese.

Your doctor is totally right about the timing, my Dad was left till he was out of breath walking 10 meters before his surgery so the irreversable damage was already done

 

[LondonAndy]

What is INR? I will Google search it as well.

Sorry. INR = International Normalised Ratio. It is a measure of how long it takes your blood to coagulate, and so helps you with making sure you are taking the right dose of Warfarin (or Coumadin). For a normal person INR = 1, but for somebody with a mechanical valve it is higher, typically a range between 2 and 3, though it varies depending on the valve and other factors. This means that someone with an INR of 2 will take about twice as long to stop bleeding following a cut, and it is done to help the blood flow smoothly through the valve without causing clots that can break free and cause a stroke. Staying within the range for your valve is very important - below range and you are at risk of a clot/stroke, too high and you can bleed internally, particularly a problem in the brain.

You will find extensive posts here about the problems of typical anti-coagulation clinics, where (a) the frequency of testing is too long, (b) the regular blood draws can cause problems for your veins, and (c) the inconvenience of being tied to regular appointments. Fortunately there are hand held meters that you can get and test strips to take a finger prick of blood at home and get your own INR in seconds. Well minutes anyway. All very similar to the machines and method used by diabetics to test blood sugar levels, but bigger.

Here in the UK, our National Institute of Clinical Excellence (NICE) has recommended self testing as best practice for our NHS, because the machines give a similar quality of result to lab tests, and being able to test more frequently (weekly is good) increases your time in the right range and results in a 42% reduction in the risk of thromboembolic events. That's huge! You can get their report here if you want

 

[Guest]

This information is very helpful. Thank you!

Sorry. INR = International Normalised Ratio. It is a measure of how long it takes your blood to coagulate, and so helps you with making sure you are taking the right dose of Warfarin (or Coumadin). For a normal person INR = 1, but for somebody with a mechanical valve it is higher, typically a range between 2 and 3, though it varies depending on the valve and other factors. This means that someone with an INR of 2 will take about twice as long to stop bleeding following a cut, and it is done to help the blood flow smoothly through the valve without causing clots that can break free and cause a stroke. Staying within the range for your valve is very important - below range and you are at risk of a clot/stroke, too high and you can bleed internally, particularly a problem in the brain.

You will find extensive posts here about the problems of typical anti-coagulation clinics, where (a) the frequency of testing is too long, (b) the regular blood draws can cause problems for your veins, and (c) the inconvenience of being tied to regular appointments. Fortunately there are hand held meters that you can get and test strips to take a finger prick of blood at home and get your own INR in seconds. Well minutes anyway. All very similar to the machines and method used by diabetics to test blood sugar levels, but bigger.

Here in the UK, our National Institute of Clinical Excellence (NICE) has recommended self testing as best practice for our NHS, because the machines give a similar quality of result to lab tests, and being able to test more frequently (weekly is good) increases your time in the right range and results in a 42% reduction in the risk of thromboembolic events. That's huge! You can get their report here if you want

 

[LondonAndy]

This information is very helpful. Thank you!

You're welcome! I try to avoid acronyms but was naughty when I just said INR here. And now that self-testing is more accepted (or better still: self-managing, where you make warfarin dose adjustments yourself once you have built up some knowledge) it is another reason for you to have confidence that what happened to your mother will not happen to you. The future is bright!

 

[Guest]

I so appreciate (and need) that sort of positivity!! I am quite the advocate for my health, so being able to self-monitor is right up my alley. I'm also very busy and on a budget, so not having to go to the clinic as often is a plus.

I'd say my biggest fears right now are: 1) The echo on Monday. First one in three years. I'm fearful the stenosis or weakening of my heart has progressed to a level that will require surgery sooner than I'd like. Of course, no one wants to have invasive surgery at any point in their life, but I hope I have at least a few more years before that happens. I'm finally on a really good path to physical, mental, spiritual well-being that I'd like to continue building up my "strength" before I go under the knife. 2) The recovery process. From all the research I've done (and seeing first-hand what Mom went through), it looks hella tough. And I'm not gonna lie, I have a low pain tolerance. 3) And well.. not to be a downer.. but dying. Like Mom did. I'm not afraid of the after-life, but the people I'd leave behind. I keep telling myself, over and over and over, that my surgery will be successful.

Might as well not sugar coat it, I'm scared.

Side note: My fears about physical support have actually subsided. My fiance has already said he'll go to the echo w/ me Monday (even though that's pretty easy). It's nice he's going to be involved throughout the entire process. Also, three good friends (a girl my age who also has heart problems), my Mom's best friend, and an older friend kind of like my grandma all said they'd roadtrip to whatever hospital I'm at to support me and my fiance. That put me at ease.

You're welcome! I try to avoid acronyms but was naughty when I just said INR here. And now that self-testing is more accepted (or better still: self-managing, where you make warfarin dose adjustments yourself once you have built up some knowledge) it is another reason for you to have confidence that what happened to your mother will not happen to you. The future is bright!