As most of you know, I have been being treated for a problem with my immune system since last fall. I wrote about the early stages of my illness and treatment on this blog:
Chapter 1: What's The Deal?
Chapter 2: Blue-Green Algae/Night Chills
Chapter 3: Music, New Antibiotic, First Blood Work
Chapter 4: Trip to the ER - First Hospital Stay
To summarize, in August of 2009, I had a bacterial infection that wouldn't get better. In September, my blood work showed that I had almost no infection fighting cells. I was told to go to the emergency room. Initially, the doctors thought I had Leukemia. They did a bone marrow biopsy but did not find Leukemia. They kept searching for the cause of the problem.
A CT Scan revealed that my thymus gland was larger than it should be. They were fairly confident that this thymoma was causing the problem. Four different doctors said it needed to be removed.
In October, I underwent a fairly major surgery called a mini-sternotomy where they cut through my breastbone to get to my thymus (located under the sternum, near my heart and lungs). It was removed. (They call this a thymectomy.)
I had been told recovery from the surgery would take some time. (They said I would have pain for about six weeks. I ended up having pretty major pain, requiring pain medication, for four months. Physically, I have felt much better since mid-February. I do still have a bit of pain for which I take Motrin daily.)
After the surgery, I was told not to push, pull or lift more than five pounds for at least three months. At my three month post-op appointment, they said I should wait another three months before doing any weigh-bearing activity. Because our insurance changed, I haven't had my six month post-op appointment yet but was told yesterday that I could resume normal activity, within reason. If it hurts, don't do it.
Back in October, I was also told the problem with my immune system would likely be resolved fairly soon. They said my numbers would likely be better within 2-3 days after the surgery. They weren't.
For the past six months, I've been on various medications to help me produce infection-fighting cells. Sometimes, I had enough. A few times, I had way more than I needed. But, disappointingly, I haven't been able to maintain an adequate number of infection-fighting cells consistently with or without medication.
Here's something I wrote in November about one of the first times my numbers dropped. I wrote this update about my treatment, in February. In March, my numbers were worse than they'd been before the surgery. I wrote, The Bogeyman is back.
Yesterday, I had my second appointment with my third hematologist, Dr. Alfredo Lopez. He outlined a new plan. I'll write about it in another post. As always, thanks for caring.