December 4: Happy to be Back Home

Dear Friends and well wishers, I am happy to bring you some good news today. Sujata has come home from the hospital after a 26 day ordeal that will be difficult to forget anytime soon. As I mentioned on this page a few weeks ago, she was readmitted to Mount Sinai on Nov 8 with an onset of Graft versus Host Disease (GVHD), a relatively common reaction to bone marrow transplants. However, Sujata’s case was anything but common. What started as isolated patches of skin rash on the surface of her hands and legs, rapidly spread all over her body and turned into blisters that caused excruciating pain and an intolerable burning sensation. We, who saw her suffer through this agony every day, could barely walk out of her hospital room without tears. It would not be an exaggeration to say that her doctors were quite concerned. Thankfully, they were able to come up with a treatment plan that eventually brought the problem under control. About ten days ago, the situation started to turn around. The blisters dried up and the skin began to regain its original color. Throughout this difficult period, the nurses at Mount Sinai provided extraordinarily compassionate care. Often, they would stay up all night with Sujata, doing everything within their power to lessen her pain. They were angels of mercy and we are forever thankful for their kindness.

Today, Sujata is indeed a lot better, though not completely out of the woods. She still has considerable discomfort, and the burning sensation remains. But it is much more bearable. The doctors are confident that in a few weeks, with care at home, this nightmare of an experience will be behind her for good.

In the picture above, Sujata is all dressed up waiting to leave her hospital room and start her journey back home.

What lies ahead?

GVHD is a deadly foe of transplant patients and it can rear its ugly head at any time. It is treacherous in that it can manifest itself anywhere in the patient’s body. It lurks stealthily in the body and can strike many months after the transplant. It is often hard to control with standard drugs. In Sujata’s case the doctors are cautiously optimistic. By continuing her treatment on an outpatient basis for the next few months, they are hoping to give her better odds against this enemy. So, we will be taking Sujata to Mount Sinai twice a week for Photpheresis. The frequency will go down as she gets stronger and, hopefully, it will stop altogether before too long. And then there is all the medication—more than 30 different kinds of tablets, liquids and injections, to be taken at all hours of the day -- early morning, before and after meals and at bedtime. Unfortunately, a good number of these medicines will probably be a part of Sujata’s life for some time to come.

A Surprise at Thanksgiving

Thanksgiving day has always been special for our family. For the past twenty years or so, we have celebrated this quintessential American festival at our home, spending the day in the company of close friends, over a traditional home cooked meal of turkey and stuffing. This year Anjali, Rahul and I grabbed a quick lunch at a local restaurant and headed to the hospital with apple and pumpkin pies to share with Sujata and the nurses on the BMT floor. Little did we know that a pleasant surprise awaited us. Late in the afternoon, one by one, many of our friends started to arrive at the hospital with dessert and drinks. Soon we had a big group. And then, on the eleventh floor visitors’ waiting room of Mount Sinai, we held a mini Thanksgiving feast. For those few hours, it was as if nothing was different this year. Thank you all for this delightful surprise.

Visitors

Now that Sujata is back home again, please come and visit. She is impatient to catch up with the recent stories and gossip of  Westchester, and also eager to share her experiences from the hospital. But, most importantly, she is desperate to have someone besides me to look at throughout the day.