Surviving Sickle Cell

Kalysia Johnson

Description

Sickle Cell Anemia is a horrible disease to an outsider looking in. However, to me, it is no different than any other life-threatening disease! The only difference is Sickle Cell Anemia does not get the much-needed recognition it truly deserves. People know little or nothing about the disease because it is not seen as important like other well-known diseases are. I personally have an issue with that problem because I have Sickle Cell Anemia, and I have always been a lifelong advocate for it!

Sickle Cell Anemia has affected me as well as many of my family members. There are countless other people in the world who also suffer from Sickle Cell Anemia. I decided to write my personal story because living with this disease has been quite a challenging journey for me, from my childhood until my middle-aged years. I have had both some good days and some bad ones, but God has kept me. So, I won’t complain!

I feel as if I’ve been on an emotional roller coaster that has taken me on some highs and lows. It seems like I have been on this ride a million times over, and it simply will not stop. Despite experiencing some periodic turbulence, I have still managed to have some great times on this roller coaster ride! Therefore, I can honestly say, “It’s okay! I’m going to ride this ‘til the wheels fall off.” Plus, I know God will never, ever give me or anyone else more than we can handle!

I have also learned how to weather the storms over the years. Early on, I lived my life worried every day because I was told that I was going to die at the age of 17. Accordingly, I lived with that expectation until I surpassed that deadline. Ever since then, I have been living my life without the constant fear of dying at such a tender age. Life is precious, and I live each day to the fullest! Sickle Cell Anemia is only a part of me; it is not the total sum of who I am!

Sujets

• Sickle-cell disease
• Biography
• Autobiography

Informations

• Publié par: AuthorHouse
• Date de parution: 14 octobre 2020
• Nombre de lectures: 0
• EAN13: 9781665504096
• Langue: English
• Poids de l'ouvrage: 1 Mo

Extrait

SURVIVING SICKLE CELL
WHILE TRYING TO LIVE REGULAR
KALYSIA JOHNSON


AuthorHouse™
1663 Liberty Drive
Bloomington, IN 47403
www.authorhouse.com
Phone: [phone]
 
 
 
 
 
© 2020 Kalysia Johnson. All rights reserved.
 
No part of this book may be reproduced, stored in a retrieval system, or transmitted by any means without the written permission of the author.
 
Published by AuthorHouse 11/11/2022
 
ISBN: 978-1-6655-0407-2 (sc)
ISBN: 978-1-6655-0408-9 (hc)
ISBN: 978-1-6655-0409-6 (e)
 
Library of Congress Control Number: 2020920202
 
 
 
 
Any people depicted in stock imagery provided by Getty Images are models, and such images are being used for illustrative purposes only.
Certain stock imagery © Getty Images.
 
 
 
Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.
CONTENTS
In Loving Memory of Kalysia Johnson
Preface
Acknowledgments
 
Chapter 1 Life-Changing Diagnosis
Chapter 2 Sickle Cell Crises and Blood Transfusions
Chapter 3 Physical and Emotional Battle
Chapter 4 Hospitalizations
Chapter 5 Thirteenth Birthday
Chapter 6 Six-Month Hospital Stay
Chapter 7 Seventeen
Chapter 8 911
Chapter 9 A New Job and New Challenges
Chapter 10 Finding Love
Chapter 11 Surprises
Chapter 12 More Loss
Chapter 13 New Life
Chapter 14 Road-Trip Crisis
Chapter 15 Another Pregnancy Loss
Chapter 16 Grief and a Trip to San Diego
Chapter 17 Napa
Chapter 18 Wedding Bells
Chapter 19 Overwhelmed
Chapter 20 Infection
Chapter 21 A New Job and a New Purpose amid a Severe Crisis
Chapter 22 A Miracle and a House
Chapter 23 Crisis Prevention
Chapter 24 Writing
Chapter 25 Support and Encouragement

This book is dedicated to everyone with sickle cell anemia and the sickle cell trait. I wrote the book to encourage, motivate, and inspire anyone with this life-threatening disease. I am a living testimony that you can live a normal and semi-regular life with sickle cell anemia.
IN LOVING MEMORY OF KALYSIA JOHNSON
It is with a shattered and heavy heart that I must write this tribute. During the early morning of August 1, 2020, Kalysia woke up in severe and unbearable pain. She was in a total body crisis, which attacked all of her extremities as well as her chest. Kalysia was taken to the hospital by her husband and son. They were not allowed to remain with her, as usual, because of the hospitals strict COVID-19 regulations. Kalysia desperately feared going to the hospital during the pandemic because she did not want to put herself into harm’s way. Nevertheless, she did not have a choice in the matter because the magnitude of her pain was beyond insufferable. Moreover, she was well aware that any time she had a chest crisis it was mandatory protocol for her to go directly to the hospital. She never wavered in doing so, because she knew that chest crises were extremely dangerous. Kalysia was conscious of the fact that they could cause acute chest syndrome (ACS), which is the leading cause of death for patients with sickle cell disease (SCD).
Thank God for the advancements in technology because my family and I were able to communicate with Kalysia every day by phone, text message or FaceTime. She described this episode as the absolute worst crisis that she had ever experienced in her lifetime. Kalysia was unable to find the slightest bit of comfort or relief, despite the fact that she was being heavily medicated with some of the most potent known pain medications available. She labored in this state for the entire duration of her six day admittance. We last spoke to her at approximately 1:30 p.m. on August 6, 2020. Kalysia was very upset because the doctors were speaking negatively about her condition. In short, they informed her that she would possibly be bedridden, because she was unable to walk independently anymore. We are a religious family; therefore, we went into prayer mode. We instantaneously started feeding her words of encouragement and reminded her God can do all things but fail. We reassured her that God had the final say, and He was the Great Physician!
Our conversation ended with exchanges of “I love you.” We wanted to allow her some time to rest and had plans to FaceTime her a few hours later. However, before we had an opportunity to do so, I received a devastating call from her husband. He told me that Kalysia had gone into cardiac arrest, and the doctors were vigorously performing CPR on her. Without pause, I began fervently praying at the top of my lungs and bartering with God for my sister’s life! I recited every healing Scripture that I knew and reminded God of His promises. I begged Kalysia to continue to fight and not leave us. Sadly, my desperate pleas and prayers were not answered. Even still, I undoubtedly know that she fought for her life until she took her very last breath, because she was a warrior! Likewise, Kalysia wanted nothing more than to have longevity of life, because she did not want to prematurely leave her family behind, especially her beloved son. Kalysia willed him into this world, and she fiercely loved him from the depths of her soul! He was her greatest accomplishment, and she only placed him second to God.
Kalysia was my dearly loved sissy, BFF and my One! She was born with Sickle Cell, and Kalysia tirelessly battled with the disease for forty-seven years. At times, the hospital was like a second home to her, which caused Kalysia to spend many birthdays and holidays in-patient. My sister endured countless debilitating crises throughout her lifetime, which resulted in her being forced to suffer tumultuous pain. Not even morphine or the strongest of opioids were able to relieve her insurmountable and excruciating pain. Kalysia received numerous blood transfusions, yet they only provided her with temporary relief for her chronic illness. She truly endured more than her fair share of challenging and turbulent times. Even still, Kalysia remained encouraged and hopeful!
She fought the good fight of faith and always counted her blessings. Kalysia never allowed sickle cell to define who she was or what she could accomplish in her life. She never felt sorry for herself or allowed anyone else to do so. Despite her disease, Kalysia considered herself to be abundantly blessed and lived her life to the fullest and never took it for granted! Her relentless spirit, strong will and determination fueled Kalysia’s warrior mentality. Moreover, these desirable traits enabled her to achieve every goal that she set for herself—especially her higher learning endeavors and desires to become a published author. Before Kalysia’s untimely demise, she had just finished writing her fourth novel.
Kalysia earned her post-graduate degree in Psychology and was actively pursuing her doctoral degree in Psychology. Kalysia was extremely intelligent and had a passion for learning. She had a brilliant mind with limitless potential! She was also a reliable, dedicated and hard-working educator for more than 30 years. Kalysia prided herself on being able to help shape and foster the minds of young children during their most fundamental years of growth! She was also a pillar in her church community, where she served in a leadership role as one of the first ladies, a Sunday school teacher, and an invaluable member of the hospitality committee. Kalysia also wrote and directed all of the plays and speeches for the youth department. She was a phenomenal woman and a beautiful person both inside and out.
Kalysia was generous, kindhearted, and had an infectious smile. She was a social butterfly and people gravitated toward her because she had a magnetic personality! Kalysia never met a stranger and always rooted for the underdog. She was a selfless and free spirited person! Kalysia was very compassionate and never bypassed an opportunity to lend a helping hand to someone in need. She would give you the shirt off of her back. Kalysia was happiest whenever she was able to make a deposit into someone else’s life. She had an optimistic outlook and always aimed high. Kalysia was extremely driven, ambitious, motivated, determined, and outgoing. She was a true Fashionista, from the top of her head to the soles of her feet. Kalysia was also an avid reader. Additionally, she loved to travel, shop, and experience new things.
Kalysia was a total mama’s girl! Anytime I answered the phone before our mom did, she would affectionately say, “Hey, Lay, where’s my mama? I need to talk to her.” Yes, as if she were an only child (smile). She was the last one of the daughters to leave home, and Kalysia didn’t move very far away from our mom at all. Instead, she moved directly upstairs from her favorite girl—her mama! It was a sensible decision for more than just healthcare reasons, because they had a close knit, beautiful relationship. During Kalysia’s young adulthood, they spent time together every day. They frequently dined at one of their favorite restaurants and went shopping together on a regular basis. As time went on, Kalysia was blessed to start her own family. In doing so, she made sure to weave her mama into the fabric of her immediate family. Their relationship did not skip a beat! If anything, it became even stronger because our mother played a very pivotal role in her grandson’s upbringing. She was a SUPER nanny to him! Kalysia already knew that would be the case, and I’m sure that’s one of the reasons why she named him