Lauren Warren

Type of Porphyria: 
Acute Intermittent Porphyria (AIP)

 

Lauren Warren As I sit here typing my story,  I am overwhelmed with the task as I think there is so much pain, so much to say.  My name is Lauren, and for me, life began again this past December.  You see, I had left the physical healthy person I was in my 12th year on this earth.  It is a long journey; one I am sorry to say is all too familiar with most of the readers of this story.  Two months ago, I had a bad attack of a mystery illness that has plagued me for 28 years of my young life.  On that night I ended up in the hospital.  On that night, in the middle of indescribable pain, fear, and weakness I decided that I had had enough.  I have no medical insurance, but I had a savings of a few thousand dollars my partner had saved to take me on a vacation to celebrate my 40th birthday.  What I received instead was the best gift I could have ever gotten, that is… hope.  With my birthday money I went to see a specialist in Westchester, and that day is the day I consider to be my first birthday on this earth again.   As I sit here typing the words, emotions run deep and I start to cry all over again.  I will be forever grateful to this saint of a man, Dr. Marshall, who gave me my first glimmer at life again on that first office visit. 

       So, how did this all start?  It began a few months before my first menses the summer prior to going into 7th grade.  One moment I was a normal, very active, very seemingly healthy child/young woman.  The next, I was hit out of the blue with the most excruciating, indescribable pain I had ever known in my life.  It gripped me like a vice, sending sharp knife-like pains throughout my abdomen, straight up under both arm pits and deep through my back.  I had never known such unrelenting pain.  I became extremely weak and unable to speak.  My breathing became very labored and I was scared to death.  My mother rushed me to the emergency room.  The doctor on staff was baffled.  He didn’t do much to help me.  He palpated my very swollen abdomen and I lay there for hours in the most excruciating pain. They ran some blood work and found nothing wrong.  I was sent home, still in extreme pain with a liquid green colored medicine, that upon  taking it only seemed to make me become more painful, so I would not take it.  The episode lasted for a few days and it took a few more days to recover from the weakness it had left me with.  And, so, life went on.  However, after this first attack, I began to have repeated attacks quite regularly.  My mother took me to many doctors.  All of them stumped as to what the cause of my extreme pain was.  I had many tests done, all during my periods of wellness for me.  I joke now and think with all the barium I have had to consume for tests, I should be a walking chalk stick figure by now.  Still, the doctors could not figure it out.  They diagnosed me as having irritable bowel.  This made me extremely upset, you see, I had also developed tachycardia so severe during these episodes that I was sure I was going to die from a heart attack.  I would become so weak I couldn’t move.  It was also during this time that I noticed my urine would take on the strangest color during these attacks, it became dark reddish brown progressing to a very dark orange color as I was recovering from the attack.  I missed many days at school.  This continued on for years.  My parents didn’t have the finances to pursue more testing, and the doctors unfortunately were clueless.   I was completely at the mercy of this illness and was greatly saddened that life as I knew it before that first attack would never be the same.  I could not go anywhere without being afraid that it would hit and I would be writhing in pain in front of strangers away from the safety of my bed.  Then it would take what seemed like endless days before I felt well enough to eat or get out of bed.  I would feel stuporess from the pain unable to think about anything and yet just try to fix my stare on something to try to pull me from the pain I was in.  And so it went for years.  I wondered how I would ever hold down a job as I would get hit with these attacks during the work day and just about collapse from the pain. Unable to even stand up straight I would have to leave work and have someone drive me home as I couldn’t drive myself.  I would have great difficulty breathing and then, the dark urine.  One of the worst days I had was when I was 23 years old.  My husband at the time was working a double shift when I had an attack hit.  I had especially severe tachycardia with this episode and could not get off the couch to call someone, anyone to help  me.  I was as scared as I have ever been from it.  I lay there for hours not knowing if I was going to survive it.  The pain in my abdomen was unreal.   By the time I was able to get to the doctor days later they ran an EKG on me and told me I had had a mild heart attack.  There were no words to describe my sadness.  You see, I had taken up running years before, and I was very good at it.  I had set many local records, and I was devastated by this news.  Still, I didn’t have the finances to pursue what was plaguing me.  And so it went on for years.  It may sound morbid and crazy, but the only comfort I had was in thinking with each attack that when one of them took me, as I was certain one day it would, they would finally discover what was wrong with me when they did the autopsy on me.  I tried many times to reach out for help, but because of lack of the financial means to do so could never find out what had such an unrelenting grip on my body.  I knew something was very wrong with me metabolically, but who to turn to?  I remember not  feeling well 7 years ago and traveling down to New York City to see an Endocrinologist who was supposed to be very good.  I was feeling quite ill prior to seeing her, but I carefully typed out all my symptoms the day before to give to her.  Upon seeing me, she looked at the paper I had typed for about 10 seconds, put it down and asked if I had insurance.  If I didn’t, she wouldn’t be able to help me because the tests would run thousands of dollars.  She had no compassion whatsoever while speaking with me, even in the pain I was in at the beginning of an oncoming attack. I left the office that day, my wonderful partner in life driving the car the two hours home.  As I lay in the car in agony and feeling extremely weak, I was once again devastated.  There would be no hope, or help  for me to relieve my poor body of what was, I felt, slowly killing  me with each episode.  By now I was starting to have neurological issues in-between attacks, what seemed like leftovers from the stress my system had gone through.  I was developing large muscle tremors and chronic eye twitching that would take a few weeks after the attack to leave.  My face, palms, and arms would feel scalded for no reason.  I couldn’t see anything, but it would hurt to touch the areas of my skin and it was painful to wear a long sleeve shirt on some days.    I got some relief from the severe tachycardia during my episodes when I discovered the incredible sport of triathlon.  I believe God was merciful and directed me to this sport that I feel saved my life in many ways.  You see, when I discovered triathlon, I discovered the wonderful world of sugary, high carbohydrate sports drinks.  Little did I know then why they helped me so drastically.  I was drinking them a few times a day both during and in-between my workouts.  Yes, God is merciful.  The frequency of the attacks decreased and I no longer had the severe tachycardia during the attacks.  Now I was just experiencing a sensation of my heart being pulled downward in my chest, a huge improvement for me.  I would still have severe symptoms in all the other ways when an attack hit, but I no longer feared dying from a heart attack.  Now all I had to do was get through the worst of the pain each time, and then wait endlessly for my body to decide when it would recover, typically getting better when the pain became much milder with each passing day, and my ability to begin consuming farina laden with lots of maple syrup, now feeling flu like instead of death like pain.  Life was on complete hold during my episodes.  I couldn’t function at all.  Just lie down and hope with each day that there would be improvement in my very swollen abdomen and a decrease in the pain.  On my good days, I was extremely healthy and had the energy of 10 people!  Then without any provocation I would be laid low again for days and would have to fight my way back to health.  It always took a toll on  my training as each time it would take days for me to overcome the weakness and shallow, labored breathing it left me with.  In 2002 I had my nutrition down to a science and the attacks had lessened enough that I was very proud to qualify for the triathlon World’s team and represent the United States at the World’s competition in Cancun, Mexico.  I was careful for the next 2 years to schedule my races around my period cycle, and pray that the attacks in-between would not happen.  During this time my partner of 11 years was a true gift to me.  If more than 3 hours passed by without eating she would tell me I needed to eat.  Even if I had no appetite, if I didn’t eat every 3-4 hours, an attack was sure to ensue by the evening or next day.  This had always been a pattern with me.  I lived with the attacks and prayed that each one would pass as quickly as possible.  In 2004, I was riding a high in my training.  I had won all but two of the races I entered.  I placed second overall at one of the longest and toughest races in New York State the week before the attached photo was taken.  The photo was taken a week later as I won an all women’s triathlon with just shy of 700 other athletes, finishing first in the pro field.  It was also the last competitive race I would be in for a year and a half.  On that fateful day, during the swim portion of the race, I had cut my foot as I exited the water and ran for the bike transition.  I finished the race, but I had to go to the emergency room to possibly have stitches put in my foot.  Unfortunately, I allowed the hospital to give me a tetanus shot.  After this, all hell broke loose in my body.  The attacks, which had decreased enough in frequency for me to be functional for longer periods of time between them, came back with a vengeance.  I was having attack after attack seemingly rolling from one right into another.   I was unable to train for a year and developed severe night sweats and fever with my attacks.  I had extreme malaise in-between the attacks.  I also began to feel like I was literally half in and half out of my body during them and it felt as if I were literally leaving my body.  It was during this time that I decided to go see a local Gastroenterologist.  He assured me he would leave no stone unturned until he figured out the cause of my pain.  I had an endoscopy and colonoscopy done, both proved unremarkable.  I was relieved at the news because after all the years of repeated attacks and unbelievable pain I was worried as to what would be found.  Yet, it left me feeling baffled and frustrated.   I still had hope until a few weeks after the procedure I was writhing in pain again with another attack and I went to see the doctor.  He was kind, but he basically said I needed to learn to eat right and he prescribed Metoclopramide (Reglan).   I am sure on my first visit he figured with as much pain as I had been in during the years that I would be an easy case.  On his behalf, when I went there, I was so focused on the abdominal pain during the attacks that I never mentioned all my other symptoms.  I didn’t even realize the connection.  I didn’t understand the reddish brown dark urine, but I never thought to mention it.  I had gotten so used to seeing it that I figured it was normal. I know, very dumb.  Again, God was merciful in that, during my attacks the pain was excruciating, but every time I looked at the Reglan prescription there was a knowing I can’t explain that it could make the pain worse, and with that a knowing that I didn’t think my poor body could or would survive a worsening of this already unbearable pain.  So, I struggled for the last 1 ½ years to come back in my training.  I turned 40 this past summer.  For my birthday, my wonderful partner had saved a few thousand dollars to treat me with a much needed vacation.  Instead, I got something even more wonderful.  I got my life back with that saved money.  Two months ago, I came back from a bike ride. I was 3 days away from my menses.  It had been an amazing ride, but I came into my house feeling the pre-attack weakness I was all to familiar with.  Then out of the blue it hit.  We were supposed to go to the movies with friends and I thought maybe I would be able to make it.  It was crazy, I knew that once the pain was under way it was twilight zone time for me.  It was a terrible choice.  As I sat in the theater it escalated to the point that I could barely speak as I turned to my partner Michele, and said, “Please take me to the hospital.”  In all these years I had suffered in silence always crawling into bed when the attacks hit and staying there for days until I recovered enough to function.  I was so ill I could barely walk and thought I would collapse before I got to the curb where Michele had rushed to get the car.  I had to tell myself one step at a time Lauren, one step at a time.  I had developed an embarrassment surrounding my illness, never speaking about it with anyone, not wanting even my closest friends to see the state it would have me in as I laid there helpless for days in pain.  They knew me as a very strong athlete, not this pile of weak mush writhing in agony I would become with each episode.  Before attacks I would become extremely agitated, irrational and would feel like things were moving in fast forward on a cellular level and would want to rip out of my skin.  Once the pain hit, I was helplessly extremely weak.  It  became such a pattern over the years that Michele would warn me ahead of time that I might have an episode coming on when I became so agitated, she was typically right.  I made it to the hospital emergency room, but I couldn’t be seen right away and I was unable to sit from the incredible pain.  I lay draped across a chair, a table and another chair awaiting someone to see me.  When I was finally seen I felt grateful for being in the hospital for the first time since I was 12 years old with my first attack during an episode.  I thought for sure they would be able to figure it out now, something had to show with this much pain.  They immediately hooked me up to bags of IV fluids on a very fast stream into my arm.  They took blood for testing and prepared me for a CAT scan.  By 3:00 A.M. the next morning my pain was subsiding after the bags of IV fluids.  I couldn’t believe that I was passing through the worst of the pain so quickly, as this was never the case for me.  I also noticed complete cessation of the constant eye twitching that had come on a few days prior to the episode.  The blood work came back normal, except for the hypo levels of my electrolytes.    The CAT scan came back normal.  The attending physician was baffled, but thought something was not normal and suggested Guillain –Barre Syndrome and that I should follow up with someone.  He was compassionate and I was grateful for his kindness in taking my situation seriously.  I was released the next morning still painful, and it still took a few days to recover, but the IV’s seemed to help tremendously.  I always felt so flu-like for days as I was recovering from each bout, very weak and still the leftover milder abdominal pain.  It would take me days beyond that to get normal bowel function  restored as well.  At this point I decided I had had enough.  I didn’t have the finances, but I feared this thing was slowly killing me in some way.  Through friends, I found the most incredible doctor down in Westchester.   I went to see Doctor Marshall for the first visit, and, this was the first time I truly had hope restored to me.  He was amazing.  He sat with me for 1 ½ hours listening in detail to each symptom and how the attacks progressed and how long it took my body to resume normal functioning.  Within the first 10 minutes of listening to me he had written something down on a piece of paper which he later came back to after asking me some other questions.  I again had forgotten all about the funny dark urine color until he asked me if I noticed a change in my urine during these attacks.  With that I exclaimed, “Yes!”  I told him the strange color.  A few moments later he showed me the slip of paper he had written something on so early in the appointment with him.  He felt strongly that I was possibly suffering from a rare genetic disorder called Porphyria.  He did some preliminary tests, and then some follow-up tests.  In the meantime I did some sleuthing into my mom’s family health history.  What I found shocked me.  Two family members had died during similar attacks like mine. I remember sitting in Dr. Marshall’s office a few weeks after the results from one of my pre-liminary tests that came back with a high positive.  As he showed me the results I began to weep.  I wept for the hope, I wept in gratitude, I wept for my mom who has suffered terribly for years with the same symptoms and struggled greatly in life.  I wept for my Grandmother who died at the tender age of 38 of respiratory failure during an attack and so I never got to know her.  I wept for my Uncle Buddy who also died at the young age of 37 from a heart attack during the same type of attacks that I had and I never got to know him.  All on my mother’s side of the family. Yes, I did a lot of attitude of gratitude crying for days.  During this evening as I got ready to finish this story I have also spoken with my Aunt Margaret who I don’t keep in close contact with.  Again, I was in shock as I just let her tell me her history and symptoms.  She has had a stomach removed and 33 ½ inches of intestine to try to relieve her of the pain she has suffered for years.  Still she suffers with attacks, all the same symptoms that I have and the way they come on suddenly and the pain that is so intense she can’t even describe it.  And after this poor women has had surgery after surgery her doctors say there is nothing they can do, and she will just have to live with the pain and other symptoms that come over her.  So, again, I found myself in tears for all the misery and suffering and most importantly, once again for all the hope.  I believe that I serve an awesome God and I am told that I shall not die, but will live, and will proclaim the glory of the Lord.  I cannot express the gratitude for His mercy in leading me to life again.  I am currently signed up to race the Lake Placid Ironman this coming July.  In doing so I will be part of something called the Janus Challenge in which a participating athlete can name any foundation of their choice, raise funds for that foundation, and the Janus Group will match a certain amount of what is raised.  I am excited to be alive, to have such incredible hope, to know how to hopefully decrease the frequency and severity of the attacks with the necessary diet for this disorder, and have I.V. glucose ready to go when necessary.  More importantly I am exceedingly happy to help others by raising money for the American Porphyria Foundation.  In closing this story, I want to say that what has sustained me through all of this was my utmost faith in God and the love of someone in my life who was there for me through every painful moment these past 11 years.  With every episode I was tended to lovingly and compassionately by my partner Michele, who nursed me back to health each time with great love, kindness, and patience, I will forever be grateful to her.  As for Dr. Marshall, there will never be words to express my gratitude.  He is without a doubt the kindest and most compassionate Doctor I have ever gone to.  Because of him, these blank pages that follow are the beginning of my story, and I am ready to fill them with joy and the promise of a better life for me.  I have often been teased that I have a Pollyannish attitude toward life, even during the tough times.  Well, I guess nothing has changed except now I am a Porphyric Pollyanna and, on July 22nd 2007, I will cross that Ironman Lake Placid Finisher line for each and every one of us.  I will carry all of you in my heart and thoughts every step of the way, and for me there is only one direction to go until I reach the finish line, forward.