Back in late August an annual MRI confirmed what my body had been telling me for several weeks. The MS is active again. I blogged about it and posted some pictures of the MRI here.
The week of Labor Day, I took the regular course of treatment -- five days of I.V. steroids -- a full gram per day. I've done the steroid thing before and fully expected to reap the benefit of fresh fuel in the tank. I had two, maybe three good days. Then came nightly fevers and and night sweats. I just kept slogging ahead though. What else can one do?
Late in September, I spent a weekend in the bathroom losing everything at both ends and rapidly became dehydrated. That Monday I took myself to the doctor for two bags of I.V. fluids, some phenergan to tamp down the nausea and instructions to return to his office for a follow up the very next day. Tuesday was little better. Skin clammy, heart rate racing along at 120+, the doc ordered an EKG. Because the EKG showed some freaky peaks, he admitted me to the hospital for heart monitoring and other tests.
As it turns out, the heart thing was nothing but CT scan showed my spleen pretty radically enlarged for unknown reasons.
Released after the couple of days it took for him to determine I was stable, I had a list of follow up appointments with the GP and neurologist to try to get to the bottom of everything and to try to determine if the spleen thing might have something to do with the MS treatment protocol. The neuro set me up with an infectious disease physician because he did not think there was any connection between spleen and MS treatment.
The appointment with infectious disease MD took two weeks to roll around. Everyday I was feel worse and worse...whatever vitality I had was draining out bit by bit, day by day. The day of the appointment in the neighboring town, October 22, I was so flat I could not drive myself so I had to get Bo out of school to drive me over. Walking into the office building using my cane, I was shuffling along like an old, old man. After an extended interview with a great doc, I had a truckload of blood drawn for evaluation and instructions to call back in two days for information on the doctor's decision about next steps.
His call to my GP beat my call back to him. He called my GP to warn him that my hemoglobin was at 8 and that he should consider bringing me in for a blood transfusion to boost it back to normal -- 14 or so.
Hmmmmm. Hemoglobin level of 8. No wonder I had been nowhere but the bed all day that Thursday and Friday.
Plans for the type, cross match were made and transfusion was scheduled to take place outpatient in the local hospital the next day, Saturday.
That's when the "fun" really started. They couldn't match my blood for safe transfusion and all the while my hemoglobin plummeted to 6.3, sapping all ability to take more that a half dozen steps and destroying every aspect of any personhood in me. I was a zombie.
The inability to safely match my blood necessitated transfer to a hospital in a neighboring city with a hematologist.
Bottom line? That enlarged spleen was eating my red blood cells faster than my marrow could produce them. They call it autoimmune hemolytic anemia. So now, not only is my own body eating the insulation off of my nerves, my own body is consuming my own red blood cells.
It has been seven days in the hospital now. I've already gone into too may details. I'll just say the anemia appears to be under control now although I have a way to go to build my hemoglobin count to normal. This morning, with a count of 7.9, the doctor is sending me home -- to bed, to continue the medication protocol.
Oh well. At least I get to start the new month at home.