Nicole Herron
Hello, my name is Nicole (Niki) Herron.  I am 26 years old, but have been through more struggles (heart wise) than most people twice my age.  I was born with congenital heart defects.  I have been married for just over a year (June 16, 2001) to a wonderful man who understands we won't every have kids of our own.  This is my story:
 
In October of 1976 my mother went into the hospital four weeks before she was due because she was in labor.  The doctors were able to stop the labor, and I held off for one more week, but could wait no longer.  Until this point no one suspected that anything could be wrong.  My older sister had been born healthy, and no one expected anything different with me.  This was long before they could know about these things while still in utero.  The day of my birth I looked just like any other baby: ten fingers, ten toes, everything in its place.  I was a bit blue, I presume, but it was my pediatrician who told my parents he felt I should be seen by a cardiologist because I didn't sound quite right.  I saw Dr. Edward Massin mere days after my birth and a heart catheterization was performed (I presume other tests were done beforehand, but I only have what I've been told to go off of, as my memory is a bit hazy in the early days ;) ). 
 
I was then diagnosed with several complex congenital heart defects: 
situs inversus totalus (all internal organs mirror imaged and on the opposite side of "normal"), ASD and VSD (holes between the top and bottom chambers of the heart), pulmonary Stenosis (narrowing of the pulmonary valve), and transposition of the great vessels (aorta and superior vena cava routed to opposite ventricles from "normal"), among other things.
 
At the time I seemed to be holding my own, so Dr. Massin suggested getting some "meat" on me before we talked about surgery.  Well, they waited five years before doing anything at all (other than another cath).  When I was five my mother started noticing that I turned blue more frequently than before and mentioned it to my cardiologist.  The decision was made to put in a left blelok-tausig shunt to increase blood flow to my lungs, and therefore oxygen to my body.  While I still didn't have the energy of other kids my age, I didn't turn quite as blue anymore, unless I was cold or sick.
 
Two years later I started having problems with skipped beats.  Again, my pediatrician was the one who picked up on it.  After trying meds to control the arrhythmia, it was decided to put in a dual chambered pacemaker.  I was seven years old.  From that point on I no longer participated in PE the way other kids did (in elementary I would do the things I could, and go to the library on days I couldn't, then in middle and high school I took an extra elective instead of PE).  I stuck out as being different, but I was lucky to have friends who stuck by me anyway.  There were only a few people who would make an issue of it, but I knew they were just ignorant and didn't know the real story.  I was very lucky to be doing well on medications for the next several years (only a pacemaker replacement to break up the monotony).  It wasn't until I went off to college (an accomplishment my mother had feared I'd never be alive to see) that I began having more problems.  I'd always had trouble walking up stairs, but flat surfaces were usually okay.  Walking around campus became too much for me and my boyfriend (now my husband) would have to drive me to my classes.  I had another pacemaker replacement in March 1997, and then things really picked up.  One night in August 1997, after suffering from arrhythmias for over a week, my abdomen was in a great deal of pain.  I didn't have a cardiologist in my college town, so I had to go to the ER.  Though I was 20 I asked for a pediatric cardiologist, since adult cardiologists are usually baffled by my anatomy.  After ruling out my heart as the problem, it was discovered that my gall bladder was enlarged.  But they could find no blockage at all.  The docs performed a laparoscopic surgery, first to check out the situation, but ended up taking the gall bladder out as it was very inflamed.  They were worried that a blood clot had perhaps caused the inflammation but, after an angiogram, found no blood clots still hanging around.  We may never know what the reason for the trouble was.
 
However, it was that trip to the ER that introduced me to my next cardiologist, Dr. Edgar Newfeld.  It was his opinion that I was a good candidate to have my ASD and VSD repaired.  After I healed from the gall bladder surgery he performed a catheterization, and presented my case to a board of surgeons.  They all agreed that the surgery would be good for me.  In December of 1997 I had my first open heart surgery.  A Dacron patch was placed over my "large" VSD and a piece of my pericardial sac was used to close my ASD.  The surgeon, Dr. Nikaido, also took down my shunt and tried to open my pulmonary Stenosis as much as he could (still some Stenosis, but not as much).  After the surgery I felt WONDERFUL.  I told people I had never realized how bad I felt until I finally found out what "good" felt like.  I had so much energy I was able to begin working out and taking very physical classes for my theatre major (classes I would have never survived before the surgery) and become a middle school theatre teacher.
 
I began to slowly loose that newfound energy.  I suffered from atrial flutter, and was put on betapace.  I had to change cards when Dr. Newfeld retired in 2001.  I began seeing Dr. Lee Ann Pearse.  Then I had a bout of PVCs that landed me in the hospital, but was controlled by a pacemaker reprogramming.  In November of 2001 I complained of some chest pain to my electro physiologist.  She suggested having my card perform a stress echo.  In that test it was found that my ventricular function was decreasing (especially when under stress).  Either from the power of suggestion, or actual worsening of symptoms, I began experiencing chest pains quite frequently at that point.  I had a cath done, a MUGGA scan, and a slew of other tests.  My card sent all my info to Toronto in hopes of finding some answers.  They came back with the suggestion of doing a tricuspid valve replacement.  The search began for the right surgeon to do it. 
 
While the search continued, the battery of my pacemaker was on its last leg.  We were hoping to put off the pacemaker surgery as long as possible so I could have both the valve and pacemaker done at the same time.  However, my pacemaker had other ideas.  On April 16th it went into backup mode (an energy saving mode in which it beats the heart at a constant 60 bpm).  I had assumed my "funny feeling" was from being upset by a conversation I'd had on the phone with my mother.  However, when it still hadn't gone away the next day I began to worry that my pacemaker was "done".  I already had an appt. set up for that afternoon, so I left work early to rest until that time came.  Sure enough, when I told the tech what I was feeling like, she knew there was no need to do an interrogation.  Instead she did a quick EKG, then called up to the hospital to get a bed ready for me.  I had the surgery on April 18th, 2002, and was home the same day.  I went back to work after only four days, and continued to work with my cardiologist to find a surgeon willing to take my case.
 
Dr. Charles Fraser at Texas Children's Hospital was willing to take me on.  However, little did I know what he thought about my case.  When I went in to meet him (the day before my surgery, as we had to travel out of town for the surgery) he informed my family and me that he felt a valve replacement was the wrong choice.  He thought it would be better to take down the patch on my VSD and place a band around my pulmonary artery, putting me back almost exactly as I'd been before my first open heart.  He felt this had the possibility of reconditioning my ventricles so they MIGHT be able to perform a second surgery in about two years that would "fix" a lot of my problems.  It took a long time of talking to him to understand his reasoning, but he finally convinced us that his plan was the best (though I hated the idea of going back to the way I had been before).  We decided to go ahead with the surgery the next morning.  That night I stayed with my mother, and was able to talk with my cardiologist back home about the turn of events.  She also talked with Dr. Fraser.  In the morning we arrived at the hospital and waited for my "turn".  But instead Dr. Fraser came out to tell us he didn't feel comfortable performing the surgery.  He didn't feel that he had adequate information and wanted to talk it over with other surgeons some more, as well as performing one more test.  So that afternoon I had a TEE.  We had to wait another four days before finding out what we would do.  The surgery was rescheduled for June 24th.  I went in expecting to have the "other" procedure, but everyone kept talking about a valve replacement.  Completely confused, we said we wanted to talk to Dr. Fraser before I was given any meds.  He finally came in and said that after looking at the TEE results he agreed that a new valve might be the choice to go with after all.  So when I awoke in ICU, that's what I had.  A bright and shiny St. Jude's valve to replace my virtually useless tricuspid valve clicking away in my chest.
 
It's been three months now and I'm having a heck of a time getting my INR regulated, but can now say I'm not nearly as squeamish about needles as I was before this whole ordeal.  The clicking can get on my nerves, but at the same time I can take my pulse by just listening to the clicks.  I don't have the surge of energy I had after my last open heart, but at least I don't feel worse.  I know my journey isn't over, and some day in the future my cardiologist and I will have to start discussing transplant.  I hope that day has been put off for a little while longer because of the decision we made.  Though I know I've been through a lot I'm very grateful to have had the experiences I've had.  It is because of these experiences that I can help others who are going through similar circumstances.  Some day I'd love to work in a children's hospital, in the cardiac ward, talking to parents and children as they face the unknown, and reassuring them that there is life into adulthood for us CHDers.  I don't know if I'll ever be able to make a career out of it, but one can always dream...  In the mean time, I love to contribute to online support groups, for getting support as well as giving.