November 8: Fighting GVHD

Dear Friends and well wishers, hard as it is for me to do, I have to bring you news about yet another small setback in Sujata’s recovery. This morning she had to be admitted again to Mount Sinai for acute Graft versus Host Disease (GVHD). Her whole body is now covered with rash that burns and pains and causes extreme discomfort. Unfortunately, for bone marrow transplant patients, GVHD comes with the territory and we can only hope and pray that for Sujata it will be short-lived.

I did not get much time to provide more frequent updates these last couple of weeks, but our life at home has been hectic to put it mildly, leaving little time for any activity outside of patient care. Add to that the gratuitous, unwelcome excitement provided by hurricane Sandy, and you can form a mental picture of the chaotic time we had the last few days. More on Sandy later, but first a little bit about Sujata’s recovery. So far there has been nothing that has alarmed the doctors. She seems to be moving along slowly but surely, and every time we are faced with a difficult situation, such as today, the doctors remind us that we need to be realistic about our expectations. Bone marrow transplant is a very invasive procedure, almost as though a large part of the human survival system was being reconstructed. So, there will be up and downs, as the human body launches protests, sometimes violently, against this invasion. On the bright side, she has not needed a blood transfusion during the last two weeks.

The picture above was taken an hour or so after Sujata settled down in her bed at Mount Sinai. Within a few minutes of her arrival, the nurses started a whole series of intravenous medication that will hopefully reduce some of the pain and burning and let her have a few hours of sleep, something she has not been able to do in two days.

Please keep Sujata in your prayers as she continues her fight.

Hurricane Sandy

For us Hurricane Sandy is now history. Those of you who did not experience it directly must have seen pictures of the devastation it has wrought across a wide swath of New Jersey, New York and Connecticut. Many homes were completely destroyed by the flooding and gale force winds. Many homes across the area are still without power. Our little community of Yorktown Heights, which, in comparison was not that badly affected, looked as though a drunken carpenter had walked through town with a huge chain saw and cut trees down at random, bringing down electric wires and knocking out power.

I had written earlier that I had planned to move Sujata to a hotel during the storm, but as it turned out this was difficult to do. The logistics were far too complicated to be be executed safely. So, for the four days that we were without power, we stayed at home and managed to survive, keeping warm and making sure, through the help of friends, that Sujata would have her special meals and, most importantly, all her medication. One of these days I will write about that adventure.