Living with TTP

The current rate of occurrence for TTP is about 3.7 cases per million people each year. One estimate places the overall incidence rate at four of 100,000 individuals. Two-thirds of individuals with iTTP cases are women.

Hello my name is Anise Dnyez Banks I am 41 yrs. old from Knoxville Tn. I’m going to share with you how TTP how altered my life’s journey in 2018. It was the new year. “I was like new year, new me.” And that was literally what happened. In January 2018, I began to experience symptoms of TTP bruising, a severe headache with numbness on one side from head to toe, heavy menstrual periods, and severe fatigue. I went to my primary care doctor and afterwards I received a call that my platelet count was 34,000. Over the next 2 months I was in and out of the hospital, emergency room, and hematologist office because my symptoms continued to worsen. My hematologist at the time couldn’t figure out why my platelets were decreasing, so he continued to run test. He sent me for a bone marrow biopsy. The following week I was in his office to receive the results of my biopsy and I remember it like it was yesterday.  I was very ill that day. The hematologist told me that my biopsy was normal; but in fact it was not normal it showed some key components of TTP. My platelets had dropped to 13,000.  My hematologist had misdiagnosed me with idiopathic Thrombocytopenic Purpura (ITP).

I remember crying to him that day, begging him to admit me to the hospital. I felt like I was dying. I felt that my low platelets were related to my severe headaches. When I asked him, he looked at me, laughed and said no it’s not related. And based on my symptoms, he wouldn’t even admit his wife. He started me on rituximab the following day. That was the last time I saw that hematologist before he retired. I was grateful because he was going to kill me. He always disregarded my symptoms and made me feel unheard. He showed signs of implicit bias. That is something that happens to many people of color when seeking help from doctors and practitioners.

The day after I received rituximab, I became deathly ill.  I had severe abdominal pain and my urine turned a black cherry color and I was barely responsive. My mother called my sister and told her to go to my house and call 911.  While waiting to be moved from the ER to a room, the on call hematologist came in and told my mother that he had looked over my medical history and suspected that I had TTP.  He ordered more labs and had a vascular team put an emergency catheter in my leg. He stated they had to move fast because I only had 12 hours to live. I started plasmapheresis later that night. The next day when the on call hematologist came to check on me and further discuss my TTP treatment, I had a stroke. I woke up several days later hungry and in intensive critical care unit. My mom knew I was going to be ok when I woke up asking for food. I was on 120mg of prednisone and daily plasmapheresis. I remained in the hospital for a month.

After being discharged, I was in and out the hospital and emergency room several times because my TTP was refractory. My new hematologist reached out to a TTP specialist at Vanderbilt and she suggested I get rituximab and that’s what he did. Once I regained my mental state back I spent many nights hyped up off of prednisone, researching about TTP.  I also read stories of survivors and caregivers. As I began to research what TTP, I learned how rare it is and that there is little information about this deadly disease. That’s the moment I made a pact with the Most High God that if he got me out the valley of the shadow of death I would advocate and spread awareness any way I can for TTP. I began to share my story on Instagram and Facebook and I did some TTP hashtags. I have had many TTP survivors and caregivers reach out to me. We have bonded over our TTP stories. I like to tell them we are family.  We are not related by bloodline, but we are related by blood. I also found the Ree Wynn Foundation. Ms. Vicki is an earth angel for TTP survivors.  I am so grateful for her and her mission not to let her beloved daughter Reeshemah Wynn’s death go in vain. She doesn’t want other families to feel the pain her family has felt because of this deadly disease.

TTP has changed my life’s journey and purpose for the better. Even though my road to recover has been rocky to say the least. I have many systemic issues from the damage TTP has done to my body. I also have anxiety, depression, and PTSD; TTP is very traumatic disease. I am grateful for the healing experience and it has strengthened my faith. Even though I walk through the valley of the shadow of death. I will fear no evil, for you are with me your rod and your staff comfort me – Psalms 23-4. I made it through the valley. I would like to say thank you to the Ree Wynn Foundation for allowing me to share my story. I am a TTP survivor and advocate. To my TTP survivors and their support team, I leave you with 3 letters and 3 words TTP really means Trust The Process.

​I am Joanna Checki and I have survived 4 episodes of TTP.

My first episode was the worst and scariest day of my life. It was on May 18, 2005.  I was at my family doctor late in the evening and I told the doctor my symptoms. I had red spots, numbness in my lips and tingling in my fingers. I had no clue what it was.  The doctor said to come back in the morning for testing. While I was waiting for the doctor, I started to experience symptoms right there in his office.  We screamed for the doctor and he quickly ordered emergency blood work and discovered that my platelets were at 9,000.  He asked if I could drive myself to the hospital and I said, “No way.”  I was too dizzy and lightheaded.  The doctor sent me by ambulance to the emergency room. Once I arrived at the hospital, multiple blood tests indicated that my platelets were rapidly dropping from 9000 to 7000 and finally 3000. 

The doctors administered more tests to diagnose my condition and determine the appropriate treatment.  They weren’t sure if it was ITP or TTP.  The tests determined that I had TTP.  I was admitted to the hospital to immediately begin plasma exchange and steroids.  I was in and out of consciousness but can slightly remember the CAT scan and MRI machine floating above my body.  When I fully regained consciousness, I had tubes all around me and Red Cross was explaining what was happening to me.  

I was in the hospital for over a month before being released.  I returned to work and 3 days later, I was readmitted.  I stayed there for a few more weeks, before being released and receiving outpatient treatment.  I have since experienced 2 more episodes of TTP.

With all my ups and downs, I was determined to keep fighting.  I wanted to get married and most of all be a mother.   I married my husband, Mark, in November 2013 and become pregnant in March 2014.  I was told that there was high chance of a TTP relapse during pregnancy.  I began experiencing symptoms, specifically petechiae, during my second trimester of pregnancy.  I was in the hospital for six weeks, released and readmitted weeks later.  I was receiving plasma exchanges 2 to 3 times per week.  I had an emergency C-section after my daughter’s heartbeat became irregular.  She was born on September 29, 2014, nearly 3 months early, weighing 2lbs, 3 oz.  After delivery, my platelet count went back to normal.  My daughter spent weeks in the NICU, but I am proud to say that she is here and has developed with very few complications.  

I am currently in remission and hope to stay there forever!  

My journey began while I was away at school. My first year away from home, and first year being on my own.  One morning on October 3rd, I called my parents to tell them that I felt sick and that I was taking medicine and resting because I thought I had a cold. After a few days of being sick, I woke up one day sweating really bad with “red dots” all over my body. I called my parents again and told them that I thought it might have been a heat rash. So, my parents told me to give it a day just to see if it goes away.

The following day, I woke up and noticed a little blood around my teeth. I brushed my teeth over and over again and went to sleep to see if it would go away. By the time I woke up again it was about 2 a.m. My mouth was still bleeding when I looked in mirror; I also noticed bruises all over my arms. I immediately called my parents again told them I don’t think I want to wait until the next day to go to the doctor. My parents told me to go to the emergency room and to call them when I got there. By this time it was 4 a.m.

When I arrived at the emergency room, they took my blood and I waited for the results. Everything began to get scary.  The doctors first said that they thought I had Idiopathic Thrombocytopenic Purpura (ITP) and said they had to keep me because my blood platelets were low. By the time my family got there, I was diagnosed with Thrombotic Thrombocytopenic Purpura (TTP) which is more severe and that I had to start treatments immediately because my platelet count was at 10,000 (normal range is from 150,000 – 450,000).  This was my first time staying in the hospital and having to get a procedure done and I was a nervous wreck.  The Red Cross had to be called in immediately to deliver plasma and start plasma exchange (which is the most effective treatment for TTP).  After almost a week of treatments my numbers went all the way up to 94,000 and then dropped back down to 9,000. I was crying and very upset because I was going through all this pain and things were not getting better.

By now the doctors made a decision and thought it would be best if I transferred to a different hospital where they were better equipped to handle my situation. They gave us a choice of Cooper Hospital or UPenn.  My family made the decision to transfer me to UPenn.  I continued treatments at UPenn which has an Apheresis department, so the Red Cross did not have to come every day.  UPenn also tried Rituxan treatment that was supposed to give my platelets a boost inside. Upenn doctors were awesome and were very motivated to get me up and running again. I went to treatments every morning and every week received Rituxan treatments for four weeks. I was on bed rest due to the danger of falling and my heart rate being so high.  It was very rough not being able to walk around.

After being in the hospital for a month, I finally got my platelets count to 209,000 and the doctors felt it was safe for me to go home. I continued to come in for treatments every morning for a week after I was discharged.  I currently continue to have my blood checked weekly at a lab close to my school to keep an eye on my platelet numbers.  I’m being weaned off of my Steroids that I’m currently taking.
 If it wasn’t for my parents and grandparents being by my side every day & night, family & friends sending prayers all around I would not have been able to do it by myself. Many times I wanted to give up but I just kept pushing.

Battling TTP is not easy.  It’s very nerve wracking, scary and confusing.  It all started with stomach pains.  I had major stomach pains from 1am- 4am every night.  Not knowing what it was, caused me to go to doctor.  The only symptoms I had were being extremely tired and stomach pains.  Once I got to the hospital, the doctor ran cat-scans and took  X-rays to see what was going on inside.  He found one  little gallstone and said it was okay for me to get discharged, because it wasn’t that serious.  After the doctor told me that I was discharged, I tried to speak to him and couldn’t talk. My words began to slur and I was in the beginning stages of having a stroke.  He quickly admitted me in hospital and called for a Hematologist to come run other tests.  The tests showed that I had TTP.  

Now, I am getting better!  I was recently discharged from the hospital. Now I’m home getting daily plasma exchanges and taking steroids to keep my platelets up. 

I am Jimmy Morris, Jr.  born and raised in Prattville Alabama.  I am the President & CEO of Morris Builders LLC, located in Prattville, Alabama. I earned a Bachelor of Arts in Music with a minor in Education from Alabama State University, an MBA with a concentration in Project Management from Columbia Southern University. I also am a graduate of Babson College Goldman Sachs 10KSB program and Turner School of Construction Management.

Before being diagnosed with acquired Thrombotic Thrombocytopenic Purpura (aTTP), I was deemed to be a healthy individual.  Growing up, I played sports, football, baseball, swam on the swim team and evening tried my hand at shotput and disc on the track team and marched in the High School Band.   Life was going great as I graduated from Prattville High School and receiving scholarships to attend three different universities in Alabama for Music, I chose Alabama State University.  

Leading up to the spiraling events of my diagnosis, I would experience excruciating headaches, which I thought was sinus and allergy troubles. I would forget somethings like where I placed my keys and they would be in my hands, fall asleep while sitting or stopping at a redlight or even when I was sitting in class. These symptoms keep being persistent until the inevitable happened.

In the summer of June 2004, I was a sophomore music major sitting in Theory II music class at Alabama State University when I began to feel sharp pains in my stomach as I was being stabbed.   I called my parent to tell them that I wasn’t feeling well, and they instructed me to come home. Of course, I told them that I would finish the day and then come home.    By the end of the day my urine was a burnt orange color, which was very alarming.     

The next morning, I woke up to blood clot on both sides of my jaws and called my family doctor.   Blood was drawn to see what was going on and he informed me that my lab mimics the labs of his daughter that had been diagnosed with leukemia, but he did not want to say and immediately referred me to his daughter’s doctor at the local cancer center.  It was a blessing that I was able to receive an appointment the same day to see the doctor.

My assigned Hematologist was out of town, and I saw the Hematologist/Oncologist working that day and was told that I had Idiopathic thrombocytopenic purpura (ITP) and was prescribed 100mg per of steroids and told I would be fine. 

By this time, I had gone on family vacation to Detroit and Canada, and I had started hallucinating not knowing who my family was and felt like I had been hit by a mac ten truck.  When my hematologist came back from vacation, he reviewed my labs and file, left a message on my parents’ voicemail, and told them to take me to the nearest hospital because I had Thrombotic Thrombocytopenic Purpura (TTP) and needed plasma exchanges.  

On June 24, 2004, I was admitted to an academic medical center in Birmingham, Alabama after collapsing at the local cancer center from the effects of a Transient Ischemic Attack (TIA).  After that episode, I didn’t remember anything until 3 days later. I received 38 plasma exchanges and 4 weeks of immune suppressants.   I was also told because so many platelets had broken down, clotted together and tried to pass through my kidneys, that I was going into early stages of renal failure and would need dialysis along with the plasma exchanges.  I ended of spending 6 week in the hospital and was released only to periodic checkups and to continue on the daily steroids. 

I had small relapses for the next 6 years, requiring my steroid dosage to be increased, along with receiving intermittent plasma infusions at the local hospital.  With the increase of the steroid, I had to be placed on short-term medication to help lower my blood sugar, because it caused me to have steroid induced diabetes.  

At this time, everything seemed to be going just fine, until one day in February of 2010 I was checking on a project in Mississippi.  I reached and grabbed a tool from one of my employees and it cut my hand, which would not stop bleeding.   At the time it didn’t dawn on me that I had a bleeding disorder, so I applied pressure thinking it would stop.  Let’s just say it continued to bleed for the next few hours.   Time passed on and I started experiencing the same symptoms from when I first was diagnosed.   One Saturday in April 2010, I was headed to rehearsal to play for a musical and I couldn’t make it out my driveway.  There I was back to square one with a platelet count of 10,000.  I was admitted back in the hospital for a month and five days for plasma exchanges and placed on additional immune suppressant treatments. This additional therapy was so strong that it raised my blood pressure, leading me to be placed on medication to help the blood pressure   Once the medical team found the proper dosage, the medication was working.  During this time, I had to be hospitalized in 2011 and 2012 for one to two weeks each time for plasmapheresis.  

 Everything seemed to be under control until I had a major relapse in March of 2014.   All I can remember is playing the piano at church and everything started to go black.  After being in an induced comma for five days, I remember waking up to a tube down my throat, trying to ask is church over.  I had suffered yet another TIA and had developed a blood clot behind my right eye. I started back on plasma exchanges and steroids daily, along immune suppressant treatments once a week. After a two week stay in Cardiac Intensive Care, I was released home, only to return to the hospital a two months later, for the same routine of treatments.  As days passed, I was asked if I wanted a bone marrow transplant and a splenectomy, and I said no.   I was started back on the original immune suppressant treatment and was released to my local Hematologist care.    

Not even a fully month later, I found myself right back in the hospital in July of 2014.  During this stay, I was presented with the option to have a dual power vortex port inserted, so I could receive outpatient plasmapheresis whenever I was about to enter into a relapse. After a few trial runs, I was released from the hospital with outpatient plasma exchanges until January 2015.  I am currently on a maintenance immunosuppression treatments every eight weeks and steroids every other day.  

Living beyond Thrombotic Thrombocytopenic Purpura (TTP) presents many daily changes; from the affects of the illness itself, sided affects of long-term use of medication and coping not being able to enjoy some of the things you were once used to.   This journey comes with some mornings not wanting to get out of bed, from staying up late from the affects of the steroids, to being tired from the treatments received.  Each day brings on new opportunities to push pass these hurdles. Every day I try to eat a healthy diet, drink plenty of water and exercise.     

The main key to living beyond TTP is to listen to your body and follow all doctors’ orders!