Here’s the story:
When I was 6 months old, I was diagnosed with a very rare bone marrow failure disorder called “Diamond-Blackfan Anemia ” (or DBA) Basically, I didn’t make red blood cells. I had to have some transfusions as a kid, but at age 5 I was asymptomatic. They kept checking me and doing regular bone marrow biopsies, but that ended when I was around 11. Hello remission!
In 1998, when I was 27, I had some trouble breathing going up stairs and decided to visit a doctor the next day. She ran some tests and my Hemoglobin was really low. I had happened to mention that I had a “blood thing” when I was little and she referred me to a hematologist at USC Norris Cancer Center. After labs and bone marrow biopsies to rule out other diseases, it was determined that I was out of remission and back to a DBA patient. I didn’t need a transfusion for another year or so. Then I needed blood once or twice a year, then every few months, and now I’m at every two weeks.
In 2005, I did a trial of Prednisone to help my bone marrow kick back into action and avoid transfusions. It didn’t end them but allowed me to go longer between. I had to come off of Prednisone because I ended up getting Type II Diabetes from it. Fun Times.
In 2010, My DBA “upgraded” to full “Aplastic Anemia.” (or AA) Basically, I don’t make blood. I had a bone marrow biopsy/aspiration and they couldn’t find any bone marrow cells in the liquid they drew out of my hip. Kind of sucks. So far, I’ve been good getting red blood cell transfusions every other week. My platelets are low but not low enough for platelet transfusions. I have no immune system. None. Happily, for someone without an immune system, I rarely get sick. I contribute it to being a child of the 70s and being allowed to drink from the hose, play in bushes and generally be a kid. Totally built up my immunity.
I’ve always had fibrous cysts in my breasts (since I got them), but a few months ago, I noticed that I was having some pain and that one of the cysts had grown. For 6-8 weeks it would grow and hurt and then go away – totally timed with my monthly cycle. My PCP told me it was probably just a benign cyst and gave me a referral to a non USC breast center. I booked a Mammo/Ultrasound for August 27th. A few days later, I saw my hematologist at USC Norris, told her about the mass and she jumped on it. On August 7th, I had a Diagnostic Mammo and Ultrasound. The Radiologist found the mass, two spots of calcification and an irritated lymph node. I had just been sick and under super amounts of stress so that kind of explained the lymph node.
On August 14th, I was scheduled for biopsies for all four sites. Prior to the biopsies I was to have IV antibiotics and two units of platelets, just as a precaution. I made it through the antibiotics just fine. After 10-15 minutes of the platelets, I had the worst allergic reaction to blood products that I have ever had. I could breathe, but couldn’t swallow, my face and arm went numb and I couldn’t stop crying. The nurse pumped benadryl into me but the symptoms wouldn’t go away which put me into a panic attack. The doctor ordered more benadryl and hydrocodone (?) and finally I started feeling better. My blood pressure hit the top at 198/127. They decided to not give me anymore platelets but they still wanted me to have the biopsy. I asked for an IV push of Ativan (that was nice) and I floated over to the biopsy place. The biopsy was super interesting (I watched) and was over quickly. I was just sore afterwards and a little pissed about the tight binding they put around me to hold off the bleeding. I took that off 24 hours later and spent the next 5 days waiting for the results.
On Tuesday, August 20th, I got a phone call from my hematologist’s scheduler saying that she (my doc) wanted to see me that Friday for a follow up to talk about my biopsy results. After I numbingly scheduled the appointment, I went into a complete meltdown. I emailed my hematologist’s nurse practitioner and fell apart saying that I needed to know NOW. Then I called her and left another meltdown-in-process voice mail. The next morning my hematologist called me on the way into work and gave me the news. I spent Wednesday and Thursday crying and telling people. On Friday the 23rd, I saw my hematologist and nurse practioner.
The blog starts here.