Happy Valentine's Day! :)
Today, I find myself in the company of folks who want me to feel better...at the hospital.
For the past couple weeks, I have not been improving. My hemoglobin level dropped to 6.8 last week, my white blood cell count was down to 1.6 and my need for immunosuppressants was on the rise.
And I could feel the effects of my blood counts dropping. I was having trouble getting through the day. I tired walking from one room to the next and got dizzy and lightheaded every time I stood up.
Last Friday, I had to take my son first to Urgent Care then the ER because of flu complications. I needed help getting him to the car because I couldn't lift him. Once there, everyone who looked at me thought were there because I was sick, not my son.
My eating and all activity slowed to as little as possible. I forced myself to go to the lab on Tuesday to get checked. By Wednesday, my nurse called me with results. She told me, based on my results, I should feel terrible and she does not know why my counts were so drastically low. I needed to check in to the hospital ASAP.
Disappointed, but aware of the necessity, I obliged. My mind was struggling to figure why I would feel this way and what potential solutions could exist. I didn't have the flu or mono or any infection and yet I felt so worn down. I got winded walking down the stairs. Keeping my head up was difficult and my legs ached just walking. I had to sit down to brush my teeth. My feet and hands were going numb all the time. I got the shakes every time I exerted myself by raising a fork or a glass to my lips. I didn't have any answers; unsettling would have been an understatement.
After struggling to get my kids' care covered (including at alarming call that now my daughter has the flu), I drove to the hospital in snow and traffic. It took more than 2 hours.
The walk to registration was excruciating; I kept having to sit down and rest, lower my head to decrease the dizziness. I was so grateful to sink into the wheelchair they had waiting for me. It wasn't comfortable, but I could rest.
Once in my bed, what's become typical hospital speed took over. I laid down at 7pm, pale, weak and dizzy. A nurse checked my name, got my history and entered me in the computer around 8pm. By 9pm, i had an IV port, but nothing flowing through it. Exhausted, I dozed off until 10:30, when I realized I had been in the hospital for 3 1/2 hours and virtually no action had been taken.
The nurse told me they didn't know which doctor to get orders from, by the time they reached the right doctor, he said they wouldn't start a transfusion until the morning. Frustrated and spent, I passed out asleep by 11:30.
This morning, things still are not fast, but I get blood drawn and my doctor tells me we are set to do a transfusion. My blood counts are dangerously low. He explains to me he believes my body is reacting negatively to my transplant medications, most specifically, an immunosuppressant I'm on(cellcept) is causing my bone marrow to not produce adequate cells. He is planning to design a new cocktail of medications to try out.
So, I'm transfusing...color is beginning to return to my face, my appetite is once again present and I can think more clearly. Standing and walking are still challenging, but I'm pretty sure the dizziness and lightheadedness will subside as my counts and blood pressure increase.
It's Valentine's Day, My frustration is gone. My exhaustion is fading. I am relieved to be alive and grateful there's a viable solution for the way I feel. I'm smiling.
My roommate flips on her tv and it's ridiculously loud. The sound of Annie belting out "The sun'll come out tomorrow!" fills our room.
"Sorry," she apologizes as she fumbles to turn it down.
"Don't worry." My smile spreads to laughter. "I love that song."
