Before 09/06/2012
Everyday I woke up with a headache. I felt like I could not catch a break. I could not open up my eyes because I was very sensitive to the light. I had no idea what was going on with me. My feet were always swollen, to the point that almost none of my shoes fit. If I managed to squeeze my foot in then I could only endure the pain for approximately one hour before I would need to remove my shoes. When I eventually went to the doctor and explained to them the symptoms I was enduring and all they did was run a CBC, Complete Blood Count, and then send me home with more medications. Anyone who remotely knows me knows that I have never been the type of person to take medication all throughout my life.
Finally I truly began to worry. I did not receive my first pimple until I was in college. I am very cautious with my skin. So when I woke up one morning to prepare and take my little cousins to the water park in my parents town and saw red dots all over my body...I panicked. I asked my mother what they could be and she did not think I should panic and recommended that I ask my doctor the next time I went to see her. So I let it go. I chose to enjoy my little cousins who looked up to me and adored me...could not let them see me worry. Over the next few days I went in to see my doctor because at that point I was going through the fifth day of a continuous headache! I went in to see her and she prescribed me more medication to add to what I was already taking. As the appointment was coming to an end, I stopped her on her way out and asked her if she knew what all of these red dots were on my skin. Her eyes grew big and my stress and worry increased. She said she was going to run a CBC and would be calling me.
09/06/2012 - The Day That Changed My Life
The CBC results came in this morning and my doctor assistant called me first thing in the morning...
"Hello, This is Dr.******'s assistant. How are you doing? We will need you to have someone rush you to the nearest Emergency Room because you will need a platelet transfusion"
That is all I was told and all I heard was 'transfusion' so I immediately thought blood transfusion. I panicked and broke down into tears. I called my mom crying and told her to come get me and take me to the ER because the doctor's office just called and said I needed a blood transfusion. She was there in less than 30 minutes. It took us about 2 hours to leave my apartment because I was expecting my textbooks that day and I did not want to miss the shipment (I know, I know...where are my priorities). Eventually I called my boyfriend and he left work early so that he can come sit at my apartment and receive my books so that I would leave to the hospital. The postal office eventually agreed to hold the books for me because of the circumstances, but my boyfriend already signed for the books for me.
When I arrived at the hospital I found out that my platelet level was at 4,000 and they immediately did a platelet transfusion and admitted me into the hospital. Overnight they increased some and then fell to 2,000 by morning. Over the next few days I received 2 more transfusions and then they relied on the IV Steroids to bring my platelet level up. It did! Every morning at 5:00 am they would come in and draw at least 5 tubes of blood. They would also come and draw at least 3 tubes multiple times throughout the day. All of this was to try and figure out what was destroying my platelets. It go to the point where the care staff felt sorry for me and did not like me getting poked with needles so often that they ordered for a picc line to be put in. A picc line allows for 2 ports to be put in...1 specifically to draw blood and 1 specifically for medication and IV. I was in the hospital for 5 days!
My hematologist attempted to perform a bone marrow biopsy by the bedside, but as he started it was too painfully so he called and scheduled anesthesia for the upcoming Monday. By the time Monday came around ...my platelet count had risen and he cancelled the biopsy and discharged me. I was happy to be discharged, but I was upset to be discharged with absolutely no answers. The battle truly began 09/10/2012 - the day I was discharged!
09/12/2012 - And Every Wednesday After That
Every Wednesday after my discharge date I had to goo into the Oncology/Hematology office to have a CBC administered in order to monitor my platelet count. It was not until my second Wednesday appointment that I began to receive SOME answers. I was told that my platelet issues could be due to ITP. Everyday from the day before I was discharged from the hospital I was having shooting pains from the middle of my back all the way down both of my legs which would prevent me from walking at times and would bring me to tears.
My fingers would get so cold that they would start to burn. 6 out of 10 of my finger developed sores on the top of them. 3 out of 6 of those developed hard plates on the top of them that would hurt if touched. Those same 3 fingers were severely bruised and began to develop bruising on the nail bed. Every morning I wake up and those 3 fingers are numb and hurt to bend. It got to the point that my mom's heart would drop anytime I would try to pick ANYTHING up because if by chance I would touch anything to them or would accidentally hit my fingers I would be brought to tears. These pains still continue as I am typing this blog.
My Hematologist could not tell me exactly what was going on with my fingers and added a test to my CBC of the week that showed up a marker that is an indication of some Connective Tissue Disease. He referred me to a Rheumatologist. More fear entered my body.
The pains in my fingers still occur daily!
10/24/2012 - My 1st Appointment With My Rheumatologist
Today was the day I met with my Rheumatologist for the very first time and this was another life changing day in my life. The hematologist had already sent over my records to this office and after talking to her for a few minutes she already knew what was going on. I was diagnosed with Mixed Connective Tissue Disease - Lupus. I immediately broke down into tears because I knew what that meant for my future. This was the day that I questioned God. This was the day that I lost all faith.
Those who know me knew that I was destined to begin medical school in January 2013. My life had fallen into place and I was the happiest person ever. Everything I ever wanted was coming true. 16 months on the island. 2 years in Chicago. Doctor of Medicine degree. 3 years of specialization. Finally a Pediatrician! The countdown had begun!
When I received that diagnoses on the 24th of October...I felt like everything was ripped right out of my hands. Every 5 minutes I broke down or shut down. Nothing could cheer me up. Medical School was gone...some will say postponed...I say gone! I secretly fell into a depression. Life had ended for me. I would simply tell people that things would continue to get worse for me and God did not want them to get better because he would not put someone with so many hopes and dreams through what I am going through. My parents and siblings would try to put my hopes back in me, but it secretly did not work. They said they have hope and I would simply say okay. My boyfriend and his family would tell me that they have enough hope to pass to me. I believe that people began realizing that I had completely lost hope.
11/04/2012 - My Breakdown
Today was the day I broke down in Church. They had special prayers for people. I did not want to go up to the front to receive prayers because I knew that deep down inside I had lost faith in Him. My parents made me go and I immediately felt tears streaming down my face. Originally the tears were me letting out my frustrations and then when I began crying that was because I felt my faith in Him slowly coming back.
One of the ladies at the church had gone through what I had went through and after my prayer she wrote me a letter. The things in that letter showed me that she truly knew what I was going through. It brought me and my mother to tears.
From that day I prayed and prayed and prayed and began going to church again. I felt like life was getting better. Little did I know that there was a surprise waiting for me in the upcoming weeks. The following Wednesday my platelets had cut in half after the Hematologist took me to 5mg steroids and the following Wednesday they cut in half after he had me on 5 mg every other day. The Hematologist then moved me back up to 20 mg daily and by the following Monday the 19th my platelets were at 7,000. The nurse and on call Hematologist panicked and made sure I was getting a CBC everyday and moved me up to 60 mg daily. On the 20th the platelet count was at 5,000. On the 21st the platelet count was still at 5,000 and they moved me up to 120 mg daily. By Friday the 23rd I went to the hospital to have a CBC done because my Hematology office was closed and they called the on call Hematologist with the results. The Hematologist called me with the results, just as my mom and I had just returned home to get something to eat before returning to the hospital...my platelets were at 2,000. She wanted me to go to the Emergency Room to be admitted...once again.
My heart dropped to my stomach and I cried and cried and cried! I did not want to go back. That day...all faith was gone again. I felt like God was playing with me. People would talk to me and I would not respond. I was in my own world. As if I had not been through enough!
11/23/2012 - My 2nd Major Hospitalization
On the 23rd I received another platelet transfusion. By the evening my platelets had rose to 32,000. By the morning of the 24th they had fallen to 5,000. The on call Hematologist ordered another platelet transfusion. By the evening the had rose to 18,000. By the morning of the 25th, the platelet count had fallen to 5,000 again. The same on call Hematologist ordered another platelet transfusion. By the evening the platelets rose to 23,000. By the morning of the 26th, the platelet count had fallen to 6,000. The on call Hematologist had once again ordered another transfusion! All this while the on call Hematologist had not come in to see us. My mom became suspicious and irritated with the constant failure of treatment and the same results...she refused the platelets! I was fortunate enough to have such a wonderful nurse that supported our decisions 110%. The doctors had not been in to see us all morning and my platelets were still dropping. The frustration was rising and so was my mother's.
After lunch time my primary Hematologist had finally arrived and was very distant and his bedside manner had gone out the door. Word had gotten around that we were no longer satisfied and were requesting a second opinion from a research hospital. He was no longer as caring as he use to be. My family was the one who brought up the possibility of the spleenectomy and other options. The 26th was the first time he discussed other options. My mother sat and listened to what he was saying and once he was finished she explained to him that we would like to be transferred to the research hospital. The Hematologist immediately said that it is not possible. Little did he know that she had already been communicating with the research hospital. She quickly with the biggest smirk on her face handed him the phone number he needed to call to refer us. He then got up and went to make the call. This was the last time I saw him during my stay. A few minutes later one of the Internal medicine doctors that had taken care of me during my 1st stay in the hospital came in. He sat down and explained to me the importance of getting this last platelet transfusion because the level my platelets were to dangerous and needed a boost. Because of the way he came in and sat down and explained everything step-by-step, we decided to accept the platelets. This doctor fought for my proper treatment and my well being. He was not even in charge of monitoring my platelets. He went back and talked privately with the Hematologist. According the Hematologist, the research hospital said that they would have done the exact same treatment for me and that I was not an urgent case so I could not be transferred. This message was relayed to us by the Internal Medicine doctor who showed that he genuinely cared for me. The Hematologist discharged me that day!
11/30/2012 - Finally A Positive In My Life
Today was the day I had my 1st appointment with my NEW Hematologist at the Research Hospital! Yes, I said it...the Research Hospital...the place where the last Hematologist said that I would not be able to get into. It was that Hematologist's Nurse that called and made the appointment for me. She told the caseworker that it was an urgent case and I needed to be seen soon. She showed me that she cared as well. After seeing my symptoms, my NEW Hematologist immediately wanted to admit me into the hospital affiliated with the Medical School. Things were looking up for me! This Hematologist spent so much time with us explaining the positives and negatives of every option that I had. He informed me that ultimately the next step was up to me. This is the kind of doctor that I need watching over me. As soon as I arrived in their ER I knew I was in the right place. I immediately looked at both of my parents faces and saw an immediate sense of relief and the stress could almost be seen rising from their chest. My mind was finally finding rest because my parents were finally finding rest. When they took me to my room in the Emergency Department they started my treatment down there per my Hematologist's request. He was moving fast with the next step. He wants me to be better! My parents want me to be better. My siblings want me better! My sorority sisters want me better! My uncles and aunts want me better! My boyfriend and his family want me better! Would I have made it this far without my amazing support system? To tell you the truth...No. I know what they have done for me individually and together! I know what I have and I know what I need. I now live my life day by day.
