Morgan Jones
My story is one that has many beginnings and many ends. Throughout life people are always saying that you only have one life to live, but is that actually true? Do we really only have one life to live? Now of course, no one can be born twice, but the feeling of being born again; becoming a “NEW’ you can be an overwhelming feeling. When I was sixteen yrs. old, I was diagnosed with Butterfly Lupus. “Butterfly Lupus” is a butterfly-shaped rash across the cheeks and bridge of the nose that is associated with the auto-immune disease Lupus. It includes sensitivity to the sun, aching inflamed joints, and severe fatigue. In the beginning, I did not know a lot about this disease. The one thing I did know is that it made my joints ache and my body swell. As a young girl in high school, appearances were everything, so when my face broke out into a red Butterfly, I did not want anyone to see me. My self-esteem took a huge hit but thank goodness it was the summer and the rash was gone before the new school year started. I was able to participate in school activities even though I had swollen joints and swelling from time to time. After graduation, nothing could prepare me for what I was about to face next.
In 2009, I started having horrible stomach pains and finally after a week I ended up going to the hospital. When I was finally able to see the doctor, I was informed that my kidneys were failing, and that I needed to start dialysis immediately. There were no words to describe the feeling that came over me. I do not think I was able to fully comprehend what was being explained for me. I was heartbroken and knew that my entire life was about to change; however, I had no idea how much. I experienced so many emotions during this time. I was angry, depressed, frustrated, and incredibly saddened. I was a teenager, attending high school and should have been having the best time of my life; instead, I was spending my time, hooked to a machine that was used to keep me alive. Why me? What did I do to deserve a life like this? My depression worsened and I unfortunately, had a hard time staying positive about my situation. It also did not help that those closes to me could only provide support by saying things like, “It’s going to be ok”. But how did they know it was going to be ok? They were not the ones going through this, I was.
It has taken a lot of growth and maturity to get to where I am now. There is so much advice I would give to someone who is struggling with this disease as I have. Giving your disease as little power as possible is a game changer when experiencing something like this. Do not let it take control of your life. Set goals that you would have wanted to accomplish before you were diagnosed and stick to them. Do not lose sight of the dreams you had before your life took its detour, because it was just that, a detour. You must make up your mind that despite your illness you can still be GREAT! In 2010, I was placed on the kidney transplant list at the University of MS Medical Center (UMMC), but before I had the chance to receive a transplant, I was hit by another bump in the road. My hematologist informed me that I had what is called “Evans Syndrome”, where my platelets were destroying themselves. In order to fix this, my spleen needed to be removed. After a successful splenectomy, I had to sustain a reasonable platelet count level for three months before any other surgeries could be scheduled, which of course, included a transplant.
Finally, on December 10, 2010, the doctors were able to perform my transplant and I received a kidney from my mother. We were the first living donor transplant at the UMMC; unfortunately, seven months later my body started to reject the kidney. Around July 2011, I experienced three severe seizures and finally a stroke that left me heavily sedated. I lost my memory and sight for a few days from the effects of the seizures and stroke. It took months to recover as I had to endure physical therapy and have a spinal tap, which helped to remove the fluid from my brain. My family and faith played a major part in my triumphs and overcoming these struggles. Having the stroke and taking so many medications took a toll on my joints. I have collapsed a few times due to weakness and have had to have a total right hip replacement. At this point in my life, I was completely overwhelmed and could not do anything but cry. I felt that every time I got a small piece of my life back on track, something would come along and derail it again. I had to learn how to walk again with the help of physical therapy for six weeks. I felt as if there was a mountain on my chest from having to quit school and not being able to hang out with the friends. In 2017, due to my potassium being too high I coded, and was brought back to life to spend four days on a ventilator. Talk about being born again and I used this second chance to push myself and to realize that I must be here for a reason.
Throughout life there will be struggles, triumphs, ups and downs, but these are the things that have made me the strong person I am today. Family, faith, goals, and just pure determination to win are things that push me to overcome every obstacle I have faced. To use the knowledge and experiences I have gone through to share and help someone else who is facing what I have already been through, is truly a gift that I look forward to giving those in need.
