My name is Joshua Ragan. I am 29 years old, and have been married to my wife Megan for 3 years. I have a beautiful 1-year-old daughter and another baby on the way. I spent 11 years in the U.S. Marine Corps, and am now in the U.S. Army National Guard, along with having another job at Securus Technologies. I was diagnosed TTP on October 18, 2013.
October 18th started off like any other day. While at work, one of my co-workers noticed that I looked very yellow. At first I thought nothing of it and blew off their comments because I figured they were just messing with me. After a minute or two, I noticed that I wasn't really feeling good, so I went to the bathroom to try to compose myself. When I looked in the mirror, I noticed that my face did, in fact, look yellow. I decided to take a picture of myself to send to my wife to ask her if she thought I should go to the ER. She quickly responded YES. That was all the confirmation I needed. I informed my boss that I had to leave immediately as I wasn’t feeling well and needed to head to the ER. As I drove to the ER, I talked to my wife on the phone. She was at work at the time but wanted to be with me to know that I was able to get to the ER safe. When I arrived, I remember parking but by that time I was feeling even worse then when I left work, and I knew something was seriously wrong.
At this point, my wife has to help me with the story because I have no recollection of the details beyond parking at the ER.
I was in the ER at the local medical center for approximately 6 hours. They took several vials of blood and ran extensive tests. It was during these tests that the doctors noticed that my platelet level was "non-existent". It was then that I was admitted to the hospital for further testing and observation over night. At this point, they had me on very heavy doses of Dilaudid and nausea medication. Even though they were giving me what they could for the pain, nothing seemed to help. They ran several more tests throughout the night but could not determine what the diagnosis was. My condition deteriorated during the night and the jaundice got significantly worse as well. My whole body turned "highlighter" yellow with jaundice and the pain got worse. I was incoherent at this point and in constant pain, yet the nurses told me I needed to try to get some sleep.
That morning the doctors told my wife that I would need a liver transplant but because the hospital did not have the capability to preform such a procedure, I would need to be transferred to UT Southwestern Hospital in Dallas, TX.
The hospital administration said that they were not sure if insurance would cover me going to that hospital and that I may just have to go to the VA hospital, which was about 45 minutes further south of Dallas. Luckily, my wife was able to work with the staff and our insurance company to get them to approve me going to UT Southwestern. Four hours later, the ambulance arrived to transfer me.
When I arrived at UT, I was immediately admitted into the ICU, right across from the nurses’ station. They had put me in this room because they felt someone in my condition needed constant monitoring and surveillance. They told my wife that I was sickest person that had come into the ICU, and that my chance of survival was 10%. They were getting my wife, who was pregnant at the time and did not know it, ready to prepare my will. By now, I was completely unconscious, unresponsive and had no idea what was going on around or to me. That is when everything truly all began. While I was unconscious, the nurses in the ICU took 15 vials of blood and recorded my body temperature at 95.4 degrees.
At this time, my wife was introduced to Dr. D, the doctor who saved my life. Dr. D was a kidney specialist who worked hand in hand with Dr. P and a slew of other doctors to determine what was going on. They ran several tests, which included: echocardiograms, blood work, CT scans, Sonograms, and MRIs. I was still on a very heavy regiment of painkillers and nausea medication but they never truly took the pain away. On October 18th, the doctors had given me 2 PICC lines, one in my neck and one in my arm. This was for easy access, not only for medication but also for the rest of my treatments. On October 19th, Dr. D sat down with my wife and explained that I had a condition called TTP. My wife had never heard of this condition and the doctor explained to her how extraordinarily rare and dangerous this disease was.
They started treatment immediately: 24/7 Dialysis, as well as daily 4 hour long sessions of Plasmapheresis. For 7 days, I lay in the ICU, completely incoherent, sedated with pain medication. Towards the end of my ICU stay, the doctors had said that I was responding well to the treatment and decided to move me from the ICU to the 5th floor, which was the liver and kidney transplant floor of the hospital.
By now I was awake, conscious, and able to understand what was happening. One of the scariest things for me is not remembering or knowing anything that had happened while I was in the ICU. The last thing I remembered was driving to the ER and now it was 8 days later and I was in a different hospital in a different city.
I spent another 3 weeks on this floor, going through all kinds of tests and rehabilitation, learning to walk and gain my muscle strength back. I saw a lot of doctors during this time including a primary care doctor, a Hematologist, a Nephrologist, CDC doctors, and a Gastroenterologist. I was on so many different medications that I gave up asking what they were for and why I was taking them.
Towards the end of my time at the hospital, I developed pneumonia, which the doctors told me was just from being in the hospital so long. They treated this with antibiotics that were simply added it to the many other IV medications I had. During my stay, I gained over 100 pounds, mainly because my kidneys had completely shut down and my body retained all the fluid that was being put in me. My entire hospital stay was a little over a month long. I missed many milestones, such as my daughter’s first birthday party and Halloween, my wife's birthday, finding out I was going to be a dad again and my wife's appointments. The hardest thing was not being able to see my daughter or hold her for that month.
It had been almost a month since my TTP diagnosis and hospitalization, and I am improving everyday. My kidneys are almost back to normal, and all my blood work is coming back with improvements and my platelets are back up to 230,000. I am still waiting on my liver to really start coming back and I am hoping once it does, my life will be back to normal. I am currently taking 7 different medications to help manage and I cannot wait until I am done with them. I see my hematologist about once a week, my nephrologist once a month, and my gastroenterologist once every 2 weeks.
So far, I have not noticed many restrictions in my life other than needing to take it easy and slow down sometimes. My wife seems to be optimistic about my TTP, but still worries about the possibility of relapse. It is difficult sometimes, having a 1 year old who is into everything, having one on the way, and trying to manage everything the best I know how. But I am very lucky to have the support of my amazing wife who understands that I will not be up to full strength for a while. My wife has gone above and beyond throughout this TTP experience, not only taking care of me while in the hospital but also our child, our home, our dogs, and work. She was truly my angel in disguise.
For anyone who has been diagnosed, or has a loved one, with TTP - don't think with this condition your life is over. Just remember all the things you have to live for and fight as hard as you can to get better. Positivity is very important, as well as the support of friends, family, and even strangers. I had churches praying for me all around the world and people praying for me that I didn't even know. I am beyond blessed to have had so many people come together in my name to help me through this. This condition was not something I ever could have planned for, so I accept it as part of my life and I move on knowing I am in God's hands. Keep your chin up and know you are not alone, we are just one of many God has an extra step for us to succeed in.
Thank you for reading my story.