I haven't done a medical update in quite a while, so it is past time. Currently I am in the hospital at Vanderbilt. It has been two years and two days since my bone marrow transplant and I was not really planning on being back in the hospital now.
A recap: The first year and a half after the transplant I did very well. Then, starting last fall, my platelet count began dropping. I had a bone marrow biopsy, we watched the counts for a bit, and after another bone marrow biopsy the decision was made to start treating me with Vidaza. Hopefully the drug would knock out the dysplasia that was trying to come back and let my new donor bone marrow take over.
I seemed to be maintaining, though not improving a lot with the Vidaza. My other blood counts began to drop (an expected side effect), so I have been getting transfusions of red cells and platelets once or twice a week, depending on how low the counts get. However, because of our trip to France in March, Tori's graduation in May and Abbey's wedding and reception in June, we decided to keep on the Vidaza path until after the EVENTS, then reassess. (I kept telling all the docs I didn't have time to be !)
So we got to the end of June and time for reassessment. And then something weird happened. A couple of days after the reception at the farm I started getting hoarse, having a hard time breathing and a hard time swallowing. This has gotten progressively worse for the last month. When I came for my monthly appointment at Vanderbilt week before last, they put me in the hospital here to run some tests.
They did a whole battery of things: brain MRI, chest and abdominal CT scans, spinal tap, a myriad of blood tests, etc. Only to not be able to find out anything. Best guesses are that it is (a) maybe related to the emergency root canal I had right before the wedding that affected some nerves either at that time or (maybe more likely) in the healing process that followed, (b) maybe a virus, or (c) "idiopathic causes," which means they really have no idea and may never figure it out. I seemed to be getting a little better so they sent me home.
Monday I went to my doc at home and he was very concerned with how I sounded, gasping for breath, etc. Obviously I had gotten worse again by then. He called my Vanderbilt doc and they immediately sent me to the ER at Vandy. ER is supposed to make admission easier. HA! Do not believe anyone that tells you that. It was 8 hours from checking into ER before they put me in a room on the transplant floor in the hospital.
However, I've been here another two days and had more tests. More are scheduled. As a matter of fact they are coming shortly to take me for some neurological test called EMG. Swallowing, talking and breathing are all difficult, though they have me on oxygen to help with the breathing. And I get quite weak and tired when I try walking more than a few steps. They've been wheeling me around in a wheelchair. My doc is hopeful they can figure something out by Friday. And until we get this under control we aren't really doing anything else about the MDS. So this is kind of an update without an end. Will post more as they figure it out.
Thanks so much for stopping by today!
April 2017 Newsletter
5 hours ago