Thursday, June 2nd I started my medications – 1 mg folic acid, 40 mg Protonix (to aid in the protection of my stomach lining and prevention of ulcers due to the strength of the steroids), and 100 mg Prednisone.
My pee was dark this morning and I started panicking that I was already relapsing. It is going to be hard to tell the difference between symptoms and side effects for a little while as my body adjusts to the medications.
With a preliminary diagnosis of Hemolytic Anemia, there were still a large number of unanswered questions. The most important thing, regardless of the cause of the anemia, was to figure out my blood type and get a match from the local blood bank so that I could receive a red blood cell (RBC) transfusion. My cells needed a boost. The initial lab work showed that I was A Positive, but that my blood had multiple antibodies in it, making my blood type rare. This meant the lab had to draw another vial to be sent to the Red Cross in Rochester for further testing. A courier literally drove to the hospital in a van to collect my sample and drive it the four hours to Rochester.
While waiting for a transfusion, the lab set out to find the cause of my hemolytic anemia. There are three causes for low hemoglobin: stunted creation of red blood cells, premature destruction of red blood cells, and internal bleeding (excessive loss of red blood cells). Creation of RBCs happens in the bone marrow. If creation is low, treatment usually involves a bone marrow biopsy and eventual transplant. Thankfully, in my case, my lab work showed that my young red blood cell (retic) count was high. My bone marrow was working overtime to try to get enough red blood cells into my bloodstream. Unfortunately, my body was destroying these red blood cells faster than my bone marrow could produce them.
A transfusion was the only option. I was admitted to the hospital around 4:30 PM on Saturday, May 28th and it took until the morning for a transfusion. During that time, my symptoms grew increasingly worse. My platelet count dropped to 33,000 and my hemoglobin dropped to 4.2. I officially had about one-third of the amount of red blood cells that I should have. I didn’t know it at the time, but my aunt and mother, who drove up Saturday evening and spent the night at the hospital, were very nervous about me even making it through the night. A code went off in another patient’s room and my aunt jolted up thinking the worst. The doctors talked about moving me to the ICU instead of the cardiac ward, but I wouldn’t have been able to have nearly as many visitors. I was glad I didn’t know the severity of my condition at the time. It would have made my 18-hour wait for a transfusion even more excruciating.
Saturday night was a struggle. Anytime I had to use the bathroom, I needed a nurse to wheel me into the bathroom in a wheelchair, wait outside the door, and wheel me back to bed. This was because of my oxygen levels and tachycardia. Also, I only got shakier and more jaundiced through the night. The reason my levels dropped to 4.2 by morning was because I had been given three IV bags of fluids and all of the fluid was diluting what good blood I did have left.
My blood type was rare and they didn’t have time to check out-of-state for a perfect match so they pumped two units of the “least incompatible” blood into my system. The transfusion took about two hours per unit. Thankfully, I didn’t have any of the side effects that can come with a transfusion, probably due to the other medications they had me taking to prevent such a reaction: folic acid, Tylenol (to reduce the risk of fever), steroids (to suppress the immune system and keep it from killing these new cells), & Benadryl (to reduce the risk of an allergic reaction).
The doctor expects that with each unit of blood that is transfused, a patient’s hemoglobin will go up one point. An hour after the transfusion, it should have been at 6.2, but was instead at 7.2! Hooray! My aunt and my mother helped me freshen up, got me some food, and then drove back home Sunday night. As long as the steroids were keeping my numbers steady in the morning, I was good to go!
Sunday night I was still being carted to the bathroom in the wheelchair, which turned out to be a good thing, since it meant the nurse knew where I was at all times. I got up to go to the bathroom and while I was in there, my heart rate spiked to 150 and ICU (the team that was in charge of my portable heart monitor and tracking my heart rate) called the nurse in a panic. Luckily, she knew where I was and was able to get to me and make sure I was okay.
The only reaction I was having from the steroids on Sunday was extreme hot flashes and sweating. The nurse helped arrange ice packs around me like an igloo so I could sleep comfortably and my husband stayed with me until I fell asleep.