November 21: Wishing you all Happy Thanksgiving

Dear Friends and well wishers, I have had little time in the last few days to sit down for a few minutes and provide an update on Sujata’s condition. I was hoping that she would be home for Thanksgiving, but, unfortunately, her condition will require a longer hospital stay than we had anticipated.

If you remember, she was admitted on Nov 8 (the third time since the start of her transplant) with an onset of Acute Graft versus Host Disease (GVHD) of the skin. This is a condition that afflicts most transplant patients in different degrees, whereby the donor cells are attacked by the host cells (or vice versa), leading to very painful and often life threatening symptoms, typically in the skin, liver and the intestines.

After Sujata was admitted to the hospital, her condition deteriorated rather rapidly and her entire body was covered by a painful rash, accompanied by unbearable burning. The best way to understand her condition would be to picture a person with third degree burns all over her body. A few days ago, the doctors officially labeled her condition as GVHD of the skin, stage 4 (on a scale of 1 to 4, with 4 being the worst).

The initial treatment plan for Sujata was augmented with additional procedures, a few of which required additional surgery to implant two different catheters on both sides of her chest. In particular, she is undergoing a process called Photopheresis three times a week. This procedure is somewhat like dialysis, but different. Her blood is circulated through a machine that exposes it to ultraviolet light, treats it with various drugs and then injects it back in her veins.

It would be an understatement to say that Sujata was in agony for most of the past week. But, thankfully, with your prayers, things are beginning to look up. Yesterday she felt a little better, was able to talk and joke with her visitors and said that her pain and burning were less than in the previous days.

Of course, the children and I have been by Sujata’s side throughout this ordeal. We consulted with the doctors frequently and took heart from the fact that they did not seem to be worried. In fact they told us that, on the bright side, the GVHD had not spread to Sujata’s liver or intestines.

It will be a while before Sujata is well enough to come back home. Perhaps, end of next week… we are keeping our fingers crossed.

The picture above was taken last night. This is the best she has looked in many days. I have put some additional pictures in an album: Mount Sinai Pictures November 2012 (see link on the left).

Also, for those of you who are puzzled by this deadly reaction, GVHD, and want to delve a little deeper, I have put a link on the left.

Happy Thanksgiving

Sujata , Anjali, Rahul, Kate and I wish you all a very Happy Thanksgiving. We are planning to take some food and eat at the hospital with Sujata. The staff and nurses on the BMT floor, who have, by now,  become a part of our extended family, will join us for some pumpkin pie.

This will be the first time in many years that we will not at home, with many of you celebrating the event with us. We will miss you all.

Visitors

If you would like to visit Sujata, you can do so at any time. There are no restrictions. She would be delighted to see you. You will need to wear a gown and gloves when you enter her room. Of course, no children, flowers or plants.