Starting Monday…a journey to the finish…

Hey folks.  I didn’t realize that if you don’t have a MySpace acct, you couldn’t read the story that I linked you to.  So here it is, via copy and paste.  Enjoy!

 My Mother’s endless struggle.

I’ll never forget the day it all began.  Mid-July, 1988: the summer of the great heat wave.  It was one of those summers that just wouldn’t quit.  It was also the summer my mother got sick.  It was this summer that would define the rest of my life, and I was just 6 years old.  My brother Jack was born in January, 1988.  He was a huge baby, weighing in at 10lbs 12 oz.  Needless to say, he was born a healthy, baby.  For my mother on the other hand, this was the beginning of her nightmare.  That July afternoon of 1988, I was outside on the patio, playing with my little brother, while my father tinkered in the garage, and my mother showered.  I was in the midst of entertaining Jack, when I heard my mother calling me.  “Kelly, get in here.” she yelled to me.I hopped up, and ran into the house as fast as possible.  Upon entering the bathroom, I saw my mother standing in the shower, scared.  “Kelly, go get your father right now.  It’s an emergency!” she screamed.“What’s wrong, Mom?” I questioned, with unrestrained worry in my voice.“I’m coughing up blood, lots of blood.  Go get your father in here right now!” she demanded.Without a second to think, I ran out to the garage and filled my dad in on what was happening.  It seemed like only a matter of minutes.  He ran into the house, my mom got dressed, I packed the diaper bag, and we flew to the emergency room of Good Samaritan Hospital.  Upon entering the ER, my parents filled out necessary paperwork, while I sat with Jack, and nervously awaited an outcome of the day’s events.  The doctors ran tests to see what would cause a healthy 34 year old woman to suddenly cough up extreme amounts of blood.  I had no idea what to think.  I was so scared.  We must have been in that emergency room for about 4 hours, when they finally came to the waiting room.  I was scared.  I didn’t know what was going on, and more than anything, I remember thinking how much I didn’t want my mom to die.  It’s amazing how the human mind works, even at 6 years old.  The nurse approached me, and took me aside to explain the situation.  She was a kind, gentle woman, who explained things to me in kid terms, so I could understand.“Kelly, your mom is very sick.  Here’s what’s going on with her body.  Your mom’s heart is really big.  It’s a lot bigger than it’s supposed to be.  A healthy heart is supposed to be the size of your fist.  Your mom’s heart is the size of a football.” she explained.I wasn’t quite sure what to make of this.  I wanted to ask her what they were going to do to make it smaller again.  Things seem so simple to a 6 year old.  Fix it and make it all better again.  “Kelly, your mom is going to need a heart transplant.  Do you know what that is?” the nurse inquired.“Umm, I dunno.” I responded.“What they are going to do is this: before a person dies, they can choose to give their organs, like their heart, to other sick people to make them better.  When this person dies, doctors will take the healthy heart of that person, take out your mom’s sick heart, and put the new, healthy one in her body.” she explained.  “Do you understand?”Other than the fact that I was completely blown away by medical science at that exact moment, I think I pretty much understood the basics of it.  I wasn’t sure how she was going to stay alive when they took her old heart out, but I didn’t want to bother the nurse with my silly questions.  She was a busy woman, after all.  I wanted her to go fix my mom.“Are they going to put the new heart in her right now?” I asked the nurse.She gave me a wry smile.  “No honey.  There aren’t a lot of healthy hearts out there right now, so we are going to put your mom on a waiting list.  When a heart comes in that is the right kind for her body, then we will put it in.” she told me.  “Ok, I understand.” I said to her.It was late and I was tired.  Jack was asleep, and my dad was ready to go home.  My mother had to stay in the hospital for observation, which scared me.  My mind just didn’t comprehend things.  I didn’t want to leave her there, all alone.  I didn’t want to leave, but we did.  I’ll never forget the ride home.  We were in the parking lot of the hospital, getting into the car.  I remember looking up into the sky, and saying to God, “Please don’t let her die.” Little did I know, this was just the beginning of adulthood for me, at 6 years old.              The next three years before the transplant were hard on everybody, especially my mother.  Her health was constantly deteriorating.  Life became a constant struggle, for everybody.   My mother’s heart was extremely weak, and the things we all would take for granted, like walking from the parking lot to the doors of the grocery store were pure misery for her.  She had a hard time breathing, especially during those hot summer days.  Walking also became a task for her, so she got a handicapped parking permit, to try and alleviate some of the stress of her ever failing heart.  She could no longer walk up the stairs to get to her bedroom, so her sleeping quarters became the couch in the living room.  Life as my mother once knew it ceased to exist once she became ill.            During this pre-transplant time, I was forced to grow up a hell of a lot faster than my peers.  I was constantly doing things around the house to help my mother…things most “normal kids” would not be doing. Changing my brother’s diapers became a daily chore for me, as well as trying to get the house cleaned up and cook dinner before dad got home from work.  Don’t get me wrong, I was still allowed to be a kid,but only when my adult duties for the day were complete.  I was bitter about it, I’ll admit.  I didn’t enjoy the responsibilities that were cast uponme just because my mom was sick.  And I would put up a fight, but in the end, I always ended up helping her out.  This became the norm, and eventually, I accepted it.              Being on a transplant waiting list is like waiting for a bomb to explode.  Each and every day we eagerly awaited that phone call, telling us a heart that matched had arrived.  Towards the end of her time before the transplant, my mother had to go to the hospital almost daily to have heart-strengthening treatments.  Her heart had become so weak, thatwithout these treatments, she wouldn’t have survived.  In addition, a large machine named “The Buddy System” was installed right outside my bedroom.  This machine was used to keep a daily check on her vital signs.  This information would then be magically transported to the hospital.  At least this is what I thought, at age 7.             By 1991, we were beginning to lose hope in ever receiving a new heart.  My mother’s health had become so bad, that I was mentally preparing myself for the worst.  She had no energy, and had the hardest time completing simple tasks.  To top it off, we were having another incredibly hot summer, so this just made things even harder for her.  The doctors said she had extreme amounts of fluid building up around the heart, and that she needed this transplant soon, in order to survive.  I didn’t think we would ever find one.  I was ready to lose my mother at 9 years old.  And then the call came…            It was July 3rd, 1991, around 6am.  I was asleep on the couch in the living room when I heard the phone ring.  A minute later, my mom came running in to tell me the good news.            KELLY, THEY HAVE A HEART.  GET UP AND GET DRESSED!  GET YOUR BROTHER READY, THEY HAVE A HEART FOR ME!” she exclaimed.            She was excited beyond belief, as she called all of our relatives and neighbors to tell them the good news.  My father raced home from work and we were out the door in record time.  It was a heart-warming scene on my block that morning.  All of our pajama-clad neighbors were standing on their porches, waiving goodbye to my mother, and wishing her well, as she began the first part of the rest of her life.                My mother received the heart of an 18- year- old young man who died in a car crash the night before.  The surgery was performed at Rush Presbyterian St. Luke’s Medical center, in Chicago, and took around 6 hours.  These were the longest 6 hours of our lives.  Who knew if the heart would take…if there were going to be complications?  What we did know was that this was a blessing, and she had a second chance at life.            After a two-week stay in the hospital, my mother came home.  She had to be extremely cautious of germs.  Her body was already fighting this new organ, so any other foreign antibodies would just increase her risk of rejection.  Aside from this, my mother was a new woman.  She had the energy of a 5-year old flowing through her veins.  I remember days when she would wake me up bright and early to go walking with her.  She had more energy than me…and it was truly amazing.              About a month after surgery, doctors found a great deal of fluid filling her chest cavity, so she had to return to the hospital, where they opened up her chest and drained the fluid.  This required another two week stay.  She soon returned home, with the same amount of vim and vigor she had before entering the hospital the second time.  I couldn’t keep up!              With an organ transplant comes the fear of rejection, so it’s common practice to put the patient on quite a few medications to try and stave off rejection.  Immediately following the transplant, she was on roughly 8-10 medications.  In the beginning, the medications were outstanding, and did everything they were intended to.  Unfortunately, everything in life seems to have a side effect, as did her medicine.            As the years passed, my mother’s health slowly deteriorated.  As quickly as she gained extraordinary amounts of energy after her transplant, it seemed that it left her body just as quickly.  Her health problems started out slow.  She was still able to hold down a job, which gave her a sense of pride.  Unfortunately, her health just got the best of her.  At one time, she was working two jobs at once, then just one.  After a while, she just couldn’t muster up the energy to work at all.  Things simply became too hard for her to handle.              Throughout the years after the transplant, she was in and out of the hospital dozens upon dozens of times.  My mother would have to deal with extreme cases of gout in her feet.  If you aren’t familiar with gout, it is an extremely painful inflammation of the joints, which would cripple her for days, leaving her to wheel herself from the living room couch to the bathroom using our computer chair.  In addition, she developed type II diabetes, subjecting her to daily insulin injections and blood sugar monitoring.            In addition to the diabetes, her doctors had her taking roughly 20 prescriptions daily, to keep her levels in check.  Being on such extreme amounts of medication does countless damage to the body.  Some medicines counteract with others, causing ill effects.  In the summer of 2003, my mothers spent two months in the hospital, because of these interactions.  Her medicine to fight the effects of the gout counteracted with her anti-rejection medicine, causing her to be paralyzed from the waist down.  She was unable to walk for months, and only with time and rehabilitation did she re-gain the ability to walk.              The amazing thing about my mother was her attitude.  At times, she would let her relentless health problems get her down.  But all in all, she kept an upbeat, positive outlook.  I greatly admired her for this.  If I was in her shoes, I know I would have given up years ago.  She never did.  She kept the fight alive, always hoping her health would finally stabilize.  Hope was all she had.              With the combination of her endless medications, in addition to her diabetes, my mother’s kidneys began to fail.  A kidney transplant was simply out of the question, so dialysis was the only feasible answer.  She was optimistic about it, and with some preliminary tests, she started dialysis on February 5^th, 2005.  After the first few sessions, doctors checked her kidney levels, and saw they were slowly, but surely improving.  We all had hope, and believed this was the answer.  Dialysis would balance everything out, and my mother would finally be as healthy as her body would allow.  Unfortunately, the dialysis treatments came too late in the game.              My mother passed away on February 21^st, 2005, at 5:34am, in her home.  Doctors determined her cause of death to be cardiomyopathy.  In other words, her heart simply stopped.  I was devastated, beyond what words could convey.  We all were.  The family knew she couldn’t last forever, but we weren’t expecting it so soon.  That morning was a horrible shock that still remains a distinct vision my mind re-visits on a daily basis.  It’s bittersweet, when you think about it.  My mother was suffering towards the end.  She might not have vocalized it, but you could see it in her eyes.  Now that she’s gone, so is her pain and suffering.  She is finally free from every little ache and pain…every pill and doctor visit that became her sole existence.  My mother fought a tough battle until the very end.  She never gave up.            Medical science isn’t perfect, like so many things in life.  At the same time, thanks to medicine, and to the family that so selflessly donated that heart, my mother was given almost 14 more years of life.  She was able to see me graduate from high school and college.  She was also able to see Jack debut in his first play, as well as become an intelligent, independent young man.  My mother died knowing her job here was done, and that she did an amazing job along the way.  Thanks to that generous donor family, my mother was given a second chance at life.  For that, we are forever grateful.