Monday, January 21, 2013

My Mothers Daughter: A Story of Strength and Perseverance

     It was August 15th 2009 and my sister, Anneliese, had just delivered the second of her 2 beautiful babies, Rilynn May. Big Brother Timmy, 4 years old at the time, was excited to welcome Rilynn and Mommy home on Anneliese's 29th Birthday, August 17th. Little did we all know that the next 3 1/2 years would be some of the most trying and painful times Anneliese, Tim and the kids would have to face.

     Things were very normal and Rilynn was a good baby. She progressed naturally, as expected, meeting all the pediatricians expectations. She grew to become known as Monster because this little girl is full of spunk. Timmy went about his days and nights doting on Rilynn and helping Mommy, all the while looking up to Daddy who was hard at work making money "to buy us toys".

     In February of 2010, Anneliese became sick. It was in a matter of days that she went from the healthy, happy sister I knew to an extremely sick version of herself. After an exhaustive 5 days and 4 nights in the hospital, with more then one harrowing pharmaceutical drug reaction, she was sent home with instructions to follow up with the assigned Gastrointestinal (GI) Physician. As suggested she made an immediate follow-up appointment with the GI and was seen within a few days. Upon her first visit she was met by a partner of the practice and diagnosed with a diseased Gall Bladder. It was only a short time later that she was scheduled for and received laproscopic surgery to remove the Gall Bladder. Unfortunately the surgery was followed by 8 weeks of recovery and no change in symptoms. For quite some time, the doctors insisted that it was simply a matter of time for her body to adjust to the change and as a family we knew no different. Trips to the Emergency Room began yet again. It was about 3 months after the surgery that the GI informed her that he was sorry but he removed a perfectly functioning Gall Baldder and in fact she was suffering from Ulcerative Colitis. This made a bit more sense because mom had suffered from the same thing in her early 30's.

     With this diagnosis Anneliese was put on a strict diet, was required to see a specialist, dietitian and start on an extensive drug plan which would include steroid treatment. She followed the plan, saw the specialists and continued to become severely sick. For the next six months we saw her go from a typical 29 year old with 2 little ones to an extremely ill 30 year old. She continued to gain weight even though she could hold nothing down, had severe stomach pains and on most days had little to no energy. It was at this point that Liese(my nickname for my little sis) decided to look for a new GI and seek a second opinion. Most of you probably already know this but sometimes getting in to see a specialist can take months...and so those months were filled with relentless sickness, pain and hospitalizations. My awesome little sister was starting to miss out on little things like Back to School Night, baseball games and play dates. This may not seem like much to the casual observer but I can guarantee, any mom of little one's knows that these moments are irreplaceable!

     During one particularly trying period she reached out to a friend who works as an RN within the University of Pennsylvania Hospital network. She explained the problems she was facing and asked for her advice, chick to chick. She was given the name of a GI specialist at Penn who would get her in the next day. At this point it had been 2 years of uncertainty, frustration and distrust. I myself did not know whether I could summon the kind of strength Anneliese exhibited to see yet another doctor, hand over another co-pay, go through numerous additional testing only to be diagnosed with something completely different AGAIN! What I can tell you is that call, that specialist, that friend helped Anneliese find an answer. After another round of CAT Scans, MRI's and X-Rays all the answers were found in a tiny little capsule also known as a Capsule Enterscopy. I'll spare you all the boring details but what that little capsule did was captured pictures of the small intestine and resulted in an unbelievable finding. Liese did not have Ulcerative Colitis, she did not have Crohns (which one doctor, with no bedside manor, announced one day without having even seen any test results) and she did not have a diseased Gall Bladder after all. She had severe Endometriosis.

     Now with an answer she could be seen and treated by her gynecologist who had delivered both Timmy and Rilynn. During her first appointment after diagnosis, her female GYN matter-of-factly explained that millions of women have Endometriosis and that she should "just learn to deal with the pain". Surgery would not be necessary, nor would any kind of pain medicine. Instead she suggested she find a pain management specialist that could teach her how to live with the pain. I don't think I've ever seen my sister more defeated. She finally had an answer, a diagnosis that made sense and a doctor that didn't feel the need to treat her for it. She retreated from normalcy and happiness and figured that she was now faced with living a life of pain and never having her children see her fully healthy again. 

     Then one day, after spending additional days in the hospital she got pissed, really pissed, and started calling people, calling doctors, calling friends. She called anyone that would listen, anyone that could suggest anything, anything to make her life whole again. She was referred to a Endometriosis Specialist at the University of Pennsylvania, once again. Within days Dr. Gochial had her in his office ordering tests, getting results and reviewing her medical records. The final test that would provide all the answers came this past September. In this procedure known as a Hysteroscopy, the uterus and cervix are checked for any inconsistency's. What Dr. Gochial found was beyond any of our imaginations. 

     In February 2010, 5 short months after Rilynn was born Anneliese had a simple gyn office procedure done, known as an IUD a.k.a. Mirena. At the time, she thought nothing of it and the doctor felt it was a good choice for her, not knowing whether her and Tim would want to have more children or not. Three weeks later when it needed to be removed, again a simple office procedure and everything was fine. What no one knew was that during the removal of the Mirena, the lining of the uterine wall was pierced and an infection began. Three years later when Dr. Gochial performed the Hysteroscopy he learned that the infection had inflamed so intensely that Liese's uterus had expanded to the size of a women's uterus at 9 months pregnant. The endometriosis had spread to the cervix and the small intestine and meant only 1 thing, a Hysterectomy at 31 years old.

     Jump ahead to this Thursday January 24th. On this morning most of us will wake up and go about our day as planned. Tim and Mom will be heading to Jefferson University Hospital with Anneliese bright and early for her surgery. Most of my day will be spent shuffling little butts around the house, building forts in the living room and stuffing little faces with popcorn and ice cream to stay preoccupied because if you know anything about me, you know my Anneliese is my everything! So if your the praying kind, please pray. If your the mediating type, please meditate with Anneliese in mind. And if your neither of those things...please think of my love, my life, my sister and send her your positive thoughts!