My diagnosis of a rare blood disease, immune thrombocytopenia (ITP), was made in November 2019. It was then that I received the news that would affect me for the rest of my life. My husband and I were getting ready to go on vacation for my 35th birthday. Neither of us had been to Las Vegas, and we spent months planning and getting excited about this trip. Just before we left town, I got some routine blood work done.
I had been putting it off for several months, and I knew I had to get it done before my next appointment, which was a week after our trip. I did the blood work, and away we went.
Read about therapies for ITP
When we got to my sister’s house to drop off the pups, I noticed that my doctor’s office had called a couple of times. I figured it was just an automated message, so I ignored it. Then they called me a couple of more times, and that wasn’t normal, so I answered. It was the nurse practitioner from my doctor’s office, and she told me that I needed to get to a hospital right away.
Without even asking anything, I quickly told her I wasn’t going to a hospital, I was going to the airport for a vacation. My doctor then got on the phone and told me not to get on that airplane and go straight to the hospital. Apparently, my platelets were 5,000, and that was alarming. I really didn’t know what that meant, but it sounded bad, and the tone in her voice scared me. My head started to spin, so I gave the phone to my husband. He kept me calm. The hospital was close by, but I was in a daze.
When we arrived at the hospital and told them what was going on, they asked if I had any active bleeding. I did, in fact. My menstrual cycle was the worst it had ever been, and I didn’t think much about it. Looking back, that should have been a sign that my body was going through something. They got me to the back fairly quickly and confirmed that my platelets were dangerously low at 5,000. They told me a normal range should be 150,000 or greater. With that bit of news, they made the call to admit me.
As we waited for a room to come available, I was filled with anxiety and confusion. Once I was finally in a room that evening, the hematologist informed me that it looked like I had ITP. It sounded like a foreign language to me, so I asked him what that meant. He continued to explain that ITP is an autoimmune disease where your body attacks its own platelets to the point where your blood can’t clot.
With so much confusion in my brain, I was thankful my husband and mom were there to actually listen to what the doctor was saying. He then told me his treatment plan, which would include a high dose of steroids (100 mg to be exact) and a number of transfusions. They wanted to keep me in the hospital until I showed improvement, which meant no Las Vegas, and I was going to probably turn 35 in the hospital instead of by a pool sipping mimosas.
Over the next few days, they monitored me closely. I think I Googled almost anything and everything about ITP that week and everything I was reading scared me even more.
Turns out ITP is a rare blood disease. Anytime the word “rare” is used in the medical world, it’s not very comforting for the patient. Rare, in this case, meant no known cause or cure, which scared the heck out of me.
On November 18, 2019, I got the best birthday present ever, I was discharged! The hematologist let me go home after a week in the hospital. He gave me a very specific follow-up plan and recommended a follow-up appointment with my regular doctor.
When I went in for my follow-up, I was miserable. I was having every known side effect from the prednisone; my sleep was significantly impaired, my entire body ached, and the brain fog was strong and steady. My doctor informed me that had I gotten on that plane that day, I would have died. She said once the cabin was pressurized, coupled with my active bleeding, I would have died before they could even land the plane.
So, there I was, 35 years old, and starting a journey that forever changed my life.