Fatima’S Journey

By Fatima Baig

This book details Fatimas journey as a two-time liver transplant recipient. The book is also about how her health struggles affected her personally and how the youth who have grown up with chronic illnesses can have normal yet special lives and how their families cope and become their strength. She also writes about how families from very different ethnic backgrounds come close together and form a strong bond in the pain of their children and their common challenges. She discussed the medical mistakes, which become life-changing for so many, and how there should be more acknowledgment of them rather than putting a lid on them. Finally, Fatima talks about how she came to spread awareness about organ donation; shares her story through social media, media, and public speaking; and how she came to be a part of a community of transplant patients, donor families, and those with chronic illness who united together through diversity and helped each other during their struggles. This book details how her life changed after her second liver transplant and the medical mistakes that Fatima endured.

• Language: English
• Publisher: Xlibris US
• Release date: Jul 14, 2017
• ISBN: 9781543434453

Fatima Baig

About the Author Fatima is a two-time liver transplant recipient and an advocate for organ donation. She was born on August 27, 1993, the youngest to four siblings. Her family immigrated to Canada in 1996 when Fatima was three years old. During 2012, while Fatima was waiting for her second liver transplant, she started spreading awareness for organ donation and sharing her story through social media, media, and public speaking. She is currently studying bachelor of journalism in hopes to continue to spread awareness about world issues. Facebook/Fatimas Journey: Life of a Transplant Recipient and Journalism Student Twitter/Fatima_Journey Instagram/Fatima_Journey

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Copyright © 2017 by Fatima Baig.

Library of Congress Control Number:   2017910484

ISBN:      Hardcover          978-1-5434-3443-9

               Softcover            978-1-5434-3444-6

                eBook                 978-1-5434-3445-3

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without permission in writing from the copyright owner.

Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

Certain stock imagery © Thinkstock.

Rev. date: 07/14/2017

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CONTENTS

Chapter 1 Life Before the Surgery

Chapter 2 Transplant and Changes

Chapter 3 Here We are Again!

Chapter 4 Their Mistakes

Chapter 5 Repercussions

Chapter 6 Beautiful Souls

Chapter 7 Liver Number 2

Chapter 8 Outreach and Awareness

Chapter 9 Through a Mother’s Eyes

Chapter 10 Life After Transplant

CHAPTER 1

Life Before the Surgery

I was born on August 27, 1993, and the youngest of four kids. I have two sisters and a brother. I was born in Jeddah, Saudi Arabia, because my father was working there at that time. My parents, originally from Pakistan, moved to Canada in 1996 with all of us. You could say we are a typical family, and I come from a long line of strong, independent women and politically ambitious people.

It’s been in our blood for six generations. Although we intensely disagree with each other at times, we always help each other up when we need be. My parents enforced great family values in us, and no matter what happens, we always remember them. And if we were ever to forget, my mom would always remind us. She is the glue that held us together through it all, and that’s some amazing glue.

I had a pretty normal childhood up until the age of two when, one morning, my mom noticed that the corners of my eyes were beginning to yellow and I became jaundiced. In the beginning, my parents thought I had hepatitis B, a common viral infection that affects the liver. However, since I had been vaccinated, it didn’t seem likely; so my mom took me to see a pediatrician.

At first, the pediatrician thought I had hepatitis A, which is similar to B but a milder liver infection. It didn’t remain mild for long, and I became sicker and sicker, jaundicing deeper and deeper. And nothing was helping. Very worried, my father consulted his tennis partner, a senior pediatric specialist. I was only two at the time, but I am sure my parents were glad to have a close friend’s opinion in such a serious situation.

He was a neonate, a newborn specialist, but he offered to see me and informed my parents that my liver and spleen were greatly enlarged and my jaundice was more of an obstructive tint than an infection. He suggested that I would need a lot of investigations done and would need hospitalization. Thus started my long journey of tests, medical procedures, hospitalizations, and illnesses. First, they ruled out all possible infections that could have caused these symptoms. After excluding all infections, they did testing to check for any blockages around my liver. All the tests were inconclusive as it was just the beginning of my disease, a disease that would shape my life.

My family had started the process of immigration to Canada before my symptoms started to appear. After discussing all the options, they had decided not to move to Canada till I was stable. At one time, they decided to expedite the move but were advised against it.

After inconclusive tests, my specialist decided to treat me symptomatically and stabilize my condition. It seemed that my liver and spleen were too enlarged to perform a safe biopsy at that time. It’s ironic that an unsafe biopsy is exactly what would change the course of my life a second time and, through a long and difficult journey, make me what I am today.

I became stable and was feeling better, so my parents decided that it was time. And they completed the move to Canada with my siblings and me. Nearly three months after our move to Canada, around the time I got my OHIP, I started getting jaundiced again. We were very new to Canada and did not know the system much, but my mom took me to a local clinic doctor to be seen. She was understandably very worried about my condition as I didn’t have a diagnosis yet.

From there, I was referred to a pediatrician, Dr. Haris. Besides being a very good pediatrician, Dr. Haris was one of the kindest doctors I came across in my journey. He referred me right away to a children’s hospital and and within ten days, I had an appointment at the hospital which is one of the most advanced hospitals in North America. And so my fifteen year-long relationship with children’s hospital began with an appointment with Dr. Fairfield, one of the nicest doctors I have had.

She was amazing in the way she took care of me in the coming years, the care and concern that she showed for my situation and for my family. She eventually did order a biopsy when it was safe to do so, as well as a number of other tests. So, finally, when I turned three years old, my parents found out that I had PSC (primary sclerosing cholangitis).

It was shocking because primary sclerosing cholangitis is a very rare disorder in children. PSC is an autoimmune disease that blocks and damages the bile ducts of the liver. We were told that there were only five reported cases in the world in children, and at that time, I was the youngest case that had ever been reported.

They told my parents that there was no cure for my disease and that my liver would eventually fail. I would need a liver transplant, but with the disease still under study, they didn’t know how long it would take to reach the point where a transplant would be needed. The suggestion of a transplant itself is very scary for most people, as it was for my parents. As a transplant itself can be a life-threatening surgery, it is usually not carried out till the organ is in end-stage condition. My family’s life and mine changed forever.

We were a recent immigrant family. And we were also dealing with two members of the family who were very sick because my dad was diagnosed with non-Hodgkin lymphoma, a type of cancer, soon after my diagnosis. Thank God, my dad overcame that with treatment and is cancer-free today. My mom, being the strong woman she is, asked if they did living donors for livers. She informed them that if they did, she would like to be my donor.

I started to attend senior kindergarten in school when I was five as my sickness gradually increased. I was getting weaker by the day; therefore, at the end of kindergarten, the school advised my parents to let me repeat the class. They told us I looked too frail and sick to be able to attend full-day grade 1. However, at my parents’ insistence, they agreed to let me sit through the morning kindergarten and one hour in the afternoon. My parents also thought I wouldn’t be able to cope with grade 1, and at that time, health was more important.

I remember on my first day of school, my mom came to pick me up, and I remember the look of amusement on her face when I asked why she was there. I didn’t know she was going to come, and I wanted to stay the entire day with my friends and have fun. I was insistent that I was not going to go home. My mom talked to my teacher and asked her to let me stay the entire day, and as she was fine with me staying there, I processed with school and loved every moment of it.

I continued my schooling from then onward—just one year behind my peers as I started grade 1 a year later. I had a wonderful school and very caring teachers throughout my elementary years, and my mom was very involved with the school as well. As much as I loved going to school, being with my friends, and learning, I still had a condition, and things were not as great as we wanted.

Unfortunately, as I progressed in school, so did my disease. And eventually, it became difficult for me to walk a few meters. I took the bus to school, which was just around the corner from my home. The thing I am so happy about is, no one treated me differently or stared at me even though I had green eyes and yellow skin. One day, when my mom dropped me off, one of my classmates asked my mom, "Why