Susan W.

March 2004

My name is Susan; I post as "Susan W" on VR.COM.  I have a lot to say and this will be long.  But I hope it helps someone.  I am 42, married for 24 years, have two grown sons, live in Southern California, and was born with a heart murmur.  At what point the doctors knew the cause of the murmur, I do not know.  But, I was never allowed to participate in physical education at school or to run at recess.  I grew up in a little midwest town and biked or walked everywhere so I was always thin and looked healthy.  I felt fine.  I have always been a sleepy head, though.  (I have also always had a poor memory.)

I had my first angiogram when I was twelve and was told that I was born with a bicuspid aortic valve and a coarctation of the aorta.  The doctors felt there was no need for surgery at that time.  I had my next angiogram when I was nearly eighteen and the doctor said I needed the coarctation repaired immediately.  I do not remember if I had symptoms, or what they might have been.  My folks took me to Houston and Dr. Denton Cooley replaced the coaractation with a Dacron graft in a transfusion-free surgery.  I was told then that I might have to have the valve replaced when I was in my 40's or 50's.  I quickly recovered from the surgery but my doctor said that I should not have children.  That was devastating.  I was married to a terrific man a few months following the surgery.  And sometimes, fortunately, children come along anyway.  I had no problems with either pregnancy but I slept nearly the entire time.

Sometime after that, I began having a few struggles with high blood pressure, but I thought it eventually resolved.  About ten years ago, however, I developed severe hypertension.  I began to become more fatigued and felt fairly lousy.  This continued and progressed and I decided that I just was not aging very well.  I also developed hypothyroidism and began putting on weight.  Throughout this time, I had fairly regular echos, which showed the bicuspid gradient regularly increasing with calcific aortic stenosis.  But, I did not know the symptoms of aortic stenosis (AS) and I did not like the cavalier attitude of the local cardiology group.  "Well, you're getting older.  And you could lose some weight."  Those were their recommendations.  I was in my early thirties and weighed 150 pounds.  But I figured that if anything was serious, that they would know and that they would tell me.

I became gradually and progressively more fatigued and began having more arrythmias.  Sometimes I felt like I couldn't get a whole breath and sometimes the arrythmia would knock the air out of me and sometimes it would make me feel like I had to cough.  When I walked at the local track, I would have a sick achy pain up both sides of my neck and between my shoulder blades.  That was angina, as other doctors told me later.  I was frequently bloated and puffy, and I began having trouble walking inclines.  Hot weather just wiped me out.  I felt like I had no energy.  It was such a different kind of tiredness.  I no longer had the energy to push the vacuum around the house or carry in heavy groceries.  I began having woozy and dizzy episodes and feelings of faintness.  It had gradually become completely debilitating.  But, I still did not know that these were symptoms of AS.

I saw a cardiologist in that same group once more, a little over a year ago, as I write this.  He told my husband and I that these symptoms were, "Nothing."  And, that I would, "possibly never need the valve replaced, but come back in a year for another echo."  He also gave us a copy of my current echo, which showed "mod-severe calcific aortic stenosis."  Not to be melodramatic, but that cardiologist was wrong and I was dying.  Had my husband and I listened to him, I'd likely not be writing this now.

We began doing our own research and eventually felt like we really needed to get a second opinion.  This sounds easy but it was all a difficult decision and conclusion for us.

We eventually consulted with three different surgeons, all of whom recommended valve replacement surgery within months.  Let me add here that we liked all three surgeons.  They did not all agree on how much I needed replaced, however: either just the bicuspid valve, or also the aorta, or also the mitral valve, which was also having malfunctions.  After I had another angiogram, however, the doctors said that I needed surgery, "in weeks, not months."  We selected Dr. Manuel Estioko, who replaced the bicuspid with a porcine tissue valve, in another transfusion-free surgery, which went well.  We think he is terrific.  My bicuspid was .7 cm2 and the doctor said that before the surgery I was probably in the last year of my life.

There are usually a few complications afterward, like a-fib.  That developed the day I got home, a week after the surgery, but I did not know what it was.  It felt pretty unpleasant to me, like a freight train in my chest flying down a steep and twisting grade with no brakes (198 bpm!), and Digoxen did not fix it.  So, I was readmitted and Sotalol kicked it.  The night after we got home from that hospitalization, the Southern California wildfires raged through out little unincorporated rural community.  Early the next morning, when we evacuated, we were sure our house would be lost.  It was quite traumatic.  But, we did not lose our home, as thousands did; our orange grove stopped the flames on the edge of our property.  But, with the bad air quality and all the ash and soot, I could not walk outside for awhile.

By the fifth week post-op though, I was feeling much better.  Even with the healing sternum and one bad rib, I noticeably felt much better than even years before the surgery!  It has been nearly six months since the surgery now and I feel amazingly better!  Apparently, my hypertension is gone, as is the a-fib, and I do not have to take coumadin either.  I am surprised at all the symptoms that I had and did not know they were symptoms until they disappeared post-op!

This site is where I first read another woman's story, including her symptoms, that very nearly mirrored my life and made me realize that I was symptomatic for valve failure.  This site helped my husband and I to realize that we needed to search out a reliable second opinion, and soon.  This site may have helped save my life and I hope my story encourages others.

One final note:  thank you, Hank, for founding this site.  Best wishes to you.  ~Susan W