Hi, my name is Shannon and I have a chronic blood disorder.
In June of this year I went to my physician at my husband’s urging because of bruising. Okay, excessive bruising. As expected he wanted to do some routine bloodwork and go from there. That evening, as I crawled into bed, my cell phone rang. It was an on call nurse from my doctor’s office. My heart skipped a beat and I think I said something along the lines of, “Uhhhh, yeah?” She said I had very low platelets and that my doctor would be calling me in the morning to discuss this with me. She also mentioned to be extra careful. I don’t know about you but I try not to hurt myself on a daily basis, but I guess these platelets made things a bit more urgent.
Skip to 9 hours later. My doctor calls and again mentions that I have VERY low platelets and that I should be careful not to get hurt… no shaving my legs, climbing ladders, or contact sports. You know, my typical Tuesday. A referral was made to a hematologist at a cancer center (cue my heart skipping another beat). My platelets have nothing to do with cancer, don’t worry!
At this appointment, the hematologist spoke slowly and explained what platelets are, how they help your blood clot, and that it appears that mine are being gobbled up by my immune system for an unknown reason. “It’s classified as ITP. Idiopathic thrombocytopenia purpura,” explained the doctor. He went on explain a bunch of treatment options for every severity of this disorder and then said I’d start with corticosteroids first.
Mayo Clinic defines ITP as:
Idiopathic thrombocytopenic purpura (ITP) is a disorder that can lead to easy or excessive bruising and bleeding. The bleeding results from unusually low levels of platelets — the cells that help your blood clot.
Idiopathic thrombocytopenic purpura, which is also called immune thrombocytopenic purpura, affects both children and adults. Children often develop idiopathic thrombocytopenic purpura after a viral infection and usually recover fully without treatment. In adults, however, the disorder is often chronic.
Skip to a few days later. Getting platelet levels checked at the hematologist and find out I’m at ONE. This translates to 1,000. An average female should have between 120-200 (thousand) platelets. I had ONE! I was scheduled for an infusion the next day and the steroid dose was doubled.
Skip ahead a week. YAY it’s a holiday weekend! The husband and I drove to Georgia to visit his brother, sister-in-law, and family for the July 4th holiday. Twelve hours after arriving, we were on our way to the local ER to have my levels checked. I had woken up that morning with a bloody nose and blood blisters in my mouth. I would be lying if I said I wasn’t frightened. I had no idea that this ITP, whatever it was, could get this bad. At this point I had received very little information about my condition.
After getting my levels checked in the ER, the attending doctor told me that they were going to have to admit me. I was unsafe to travel and needed more aggressive medicine. Everything happened so quickly and it was completely overwhelming. Within an hour I had cried 3-5 times, I can’t recall exactly, I had an IV placed in each arm and some gentlemen wheeled me in my bed up to the ICU.
Skip ahead FIVE days. Yes, ladies and gentlemen, I spent 2 days in ICU and 3 days on a regular floor. My time in the ICU was a blessing because of a caring angel of a nurse. Without her, I have a feeling this blog post would be a lot different. She provided me with TONS of printed information, LOTS of laughs, and genuine kindness. She also got the ICU to shut the lights off in our area so that we could see the fireworks outside! I was waiting on a transfer to Emory University Hospital when the platelet gods got me stabilized enough to travel back to Charleston to a doctor at MUSC the following morning.
I had said that this year was going to be a year of adventure. This is one adventure that I wasn’t expecting to take. Alternatively, I couldn’t imagine it going any differently.
This birthday, I’m thankful for this ongoing journey. In Georgia, my husband (Chrys) and I were surrounded by his wonderfully caring family. They brought food, blankets, entertainment, and good company. They washed our clothes and always appeared at the best possible moment, when we needed them the most. I’ve found a doctor that I feel confident in. My interest in health, wellness, and mindfulness has made me open to being an advocate for myself and an amateur ITP researcher. My husband is the rock I never knew I needed. My friends sent so much love my way that it was impossible not to see the bright side of things. My mom spent a week caring for me, driving me around, and helping me figure out my new boundaries. This disorder doesn’t stand a chance with all love surrounding me.
As of today, I get weekly blood work and see my hematologist once a month because my disorder is not yet in remission. I’m crossing my fingers that that happens by the end of the year… a Christmas gift perhaps? I have days where I feel completely exhausted, usually when my levels are beginning to drop, and I take ‘steroid bursts’ as needed. Other days, I’m walking on sunshine. I’m no longer allowed to stand on my head, so I’m upping my meditation game.
My birthday wish is for good health and happiness for the people that have shown me endless amounts of love in these past 11 weeks. I have a feeling it’s much easier to fight illness when you start out with a healthy body and brain. Take care of yourselves you lovely people!
Peace and platelets,
(If you’re curious about ITP, please check out the Platelet Disorder Support Association, they have GREAT information and resources. Also, September is ITP Awareness!)