I decided on Thursday evening, after my rude encounter with the staff at the hematology office, that I needed to find a new hematologist. I know I am going to need to see this specialist for a very long time and I refuse to settle. I want a doctor I can trust. Thankfully, I found that today.
I called the old doctor’s office this morning around 10:30 hoping to get my numbers from last week so I could share them with the new doctor. The receptionist said “oh. Nobody called you?!” and then proceeded to tell me the results were finalized yesterday and I needed to come in right away because my platelets weren’t responding to the steroids. At this point I was fed up so I said I’d call back to schedule an appointment. My hemoglobin was up to 10.4 from 8.7, but my platelets had only gone from 41 to 44. These results were a week old at this point and I was just finding out about them. This only served to solidify my decision to switch hematologists.
I worked from home today because I had an appointment with my new hematologist at 11:30. The office was easy to find and spacious. I filled out some paperwork and was taken in the back around 11:50 to have my blood drawn and my vitals recorded. The nurse took three vials of blood and immediately ran one through a machine that spit out a reading in less than five minutes! Do you know how amazing it was after the fiasco with my original doctor to know my numbers before leaving the office?
By the time the doctor met with me, he already had my counts. My hemoglobin dropped ever so slightly to 10.2. This drop wasn’t that worrisome or significant, but the steroids should have at least kept my numbers stable. He then explained my condition to me and discussed that yes, figuring out a treatment plan is important, but so is taking ten steps back to figure out why this condition started in the first place. Until we know what caused it, it’s very hard to stop it. He then got very serious and said “you might want to conference in your husband for this part”. He proceeded to tell me that my platelet count was at 13. 13?! How did it drop by 31,000 in one week? Seven days?! The thing that REALLY concerned him and, in turn, frightened me is that the number was able to drop so much and so low while on high dose steroids that were meant to do the exact opposite.
Because of my dangerously low count – at 10 and under some people start spontaneously bleeding internally without any cause or underlying injury – he said the first step was to send me to Jersey City Medical Center for an immediate outpatient platelet transfusion. By the time the hospital finished registering me it was past 3:00. The infusion center drew my blood to send to the lab for cross matching. I couldn’t get platelets until I had been matched. Matching takes the lab about an hour and then the transfusion takes about an hour as well. Unfortunately, the infusion center closes at 4:00. The nurses called the doctor to ask if I could do the transfusion tomorrow morning at 8:00 instead and he said that it can’t wait. He told them that if they can’t do it today I would need to be admitted. Getting admitted would suck for two reasons – it would mean staying overnight even though I just needed a quick one hour transfusion & it would mean another $500 admission fee.
Luckily, the lab was able to rush match the blood and had the platelets to the nurses by about 3:45. One of the nurses graciously offered to stay past her shift to administer the transfusion, even though she doesn’t get paid overtime. The platelet bag finished around 4:30 and I was able to head home.
Here is the plan put in place by the new hematologist:
- Look at my blood smear under a microscope to see if there were any Giant Platelets the machine weeded out and didn’t count.
- The platelet transfusion – Check!
- Begin IVIG (pending insurance approval, which takes 24-48 hours). He wants to have me do IVIG four days in a row (excluding weekends). He said it takes about five hours each time and it involves being hooked up to an IV for those five hours.
- See how the IVIG works. If it works, I can begin tapering off the steroids, but he will have to closely monitor my hemoglobin to see if it starts dropping. If the IVIG doesn’t work, he wants to do a bone marrow biopsy to see if my bone marrow has stopped producing platelets for some reason.
He has me out of work until after IVIG is complete. I can work from home, but he doesn’t want me commuting into the city on the train. All I would need is for one person to accidentally elbow me and I could very likely start bleeding internally. Unfortunately, there aren’t usually any visible signs of internal bleeding until it’s too late.