Friday, April 6, 2012

It's My Story...

Contributed by Laura Thurman Shaffer

As I was walking through the mall with my mom and daughter, I was thinking to myself, ‘How lucky I was to be buying baby clothes again!’

I had wanted this baby for years, and I was finally showing!! I also just got over a scare: I had started bleeding, and they weren’t sure why. They did do an ultrasound and found a little tear in my uterus, so I was put on bed rest for a few weeks.

Earlier that day, I had cut my finger while working in the kitchen. I looked down at the cut, hours later, thinking it was funny that it was still bleeding. It bled so much when I first cut it that I ended up with blood all over the floor, as well as covering at least a dozen paper towels! My concern led me to stop in at my husband’s station to get it looked at, and I got laughed at!

“Laura, its just a little scratch!” Nick said. He wouldn’t have thought so if he saw the mounds of paper towels and blood on my kitchen floor! Oh, well.

Back at my mom’s house a few hours later, I had to pee again—another fun perk of pregnancy! As I got up, there it was again…peach-tea urine. I called my mom in to see if I was crazy, and she thought that I needed to call my OB doctor.

“Laura, that’s weird, plus you do not look right…Are you sure your going to be OK while I am in Florida?” she asked.

“Moooooommmmmm…I’ll be just fine!” I said. To be safe, I called my OB and got an early-morning appointment.

That next day, I went to my doctor appointment, and got to hear my little guy’s heartbeat! The doctor came in, took one look at me, pushed on my stomach (which was always hurting me), and said that I needed to get to the emergency room right away.

I called my husband, but I was not panicked. I told him to stay at work; that it was probably just so I could get checked out, and that I would be home later.

I sat there alone for hours on a hard bed in the triage unit of the OB floor. They came in for blood every hour. Finally, after 5 hours of waiting, a nurse came in and said a doctor would be in shortly to see me.

That nurse did not tell me that a team of doctors was coming, but that’s what I got. I was shocked to see so many white coats standing beside the bed. They asked me all kinds of questions. Finally, one asked, “Mrs. Shaffer, have you ever had problems with your blood?” I shook my head, indicating that I had absolutely no history of blood-related problems, and then they told me they were admitting me to the hospital.

The next morning was a blur of specialists, and a statement that I will NEVER forget. “In Order To Save You, We May Have To Take Your Baby.” I was barely hitting 19 weeks: The baby would never survive delivery.

I thought, ‘After all that I had been through to get him, you want to take him away from me?? NO WAY.’

That day, to my surprise, my skin turned very yellow. Jaundice! They told me that billirubin would cross the placenta and cause problems. All day long, specialists provided me with more bad news, but not one could tell me what was wrong with me. It wasn’t HELLP (related to the very serious pregnancy complication of pre-eclampsia); although similar, some of the key symptoms were not there.

Finally, after a week in the hospital, a hematologist was able to stabilize my blood, and I went home on bed rest and monitoring. I visited my hematologists and my OB every few days, and I made it to 38 weeks…despite all the speculations of a premature birth.

I gave birth via a caesarean, which was a terrible experience for my OB! Then my hematologist diagnosed me with me Evan’s Syndrome. He seriously thought that maybe this was all pregnancy-related but my blood did not recover after birth. In fact, ITP and hemolytic anemia were getting worse. The steroids were no longer helping; blood transfusions were not helping; Iron Transfusions were not helping. Rituxan was my next step, however, the pain in my stomach was severe and the rapid growth of my spleen could no longer be ignored.

On June 3rd, 8 months after giving birth, my overly enlarged spleen was removed. I almost did not make it through the surgery. I had several blood transfusions and, if not for the patience of my surgeon and anesthesiologist, I would not be writing this today. Not only did the surgeon remove from my body a spleen the size of a newborn: He also took out an accessory spleen!

One week and a drain tube later, I was released to go home. I still felt terrible and the pain on the opposite side of my stomach got worse. One very early morning when I got up to check on the baby, I nearly passed out.

I called my husband and he took me to the hospital. They did a CT scan, which not only showed that the drain tube crossed over my stomach, but that I had several more spleens. To this day, I still have pain where my spleens are, but they are not being monitored and we do not know if they are working.

A few weeks after surgery, I was told that my Evans Syndrome was in remission, and that maybe I never had it; They just couldn’t be sure.

Today is March 28, 2012. I still start to turn yellow. I get very pale, very tired, and my joints hurt. I stutter, and I have terrible headaches. My hands, arms, feet, and legs are always numb. I am not allowed to drive because its possible that I may be having mini seizures, and I have momentary memory loss. I feel swollen and bloated. But my blood is still in remission.

In November, I was hospitalized for a critically high level of ammonia in my blood. Still no one can tell me what’s wrong with me. I need someone to tell me. I want someone to tell me. I despair.

My life has completely changed: I feel weak and not in charge of myself anymore. I have no freedom, no career path, no money, and no insurance. Things have gone downhill so quickly. When I go to my hematologist I am made to feel like a hypochondriac, as if I can NOT be validated because my numbers are good. Luckily, my family doctor is listening: on April 11th I will see a rheumatologist. My family doc suspects that lupus may be creeping through my body. FINALLY…an answer. I am awaiting an MRI—because I am an American without insurance, it’s on hold.

Copyright © 2012 by Evans Syndrome Community Network. All rights reserved.

No comments: