In January Deepa was diagnosed as having Ocular Myasthenia .We hoped that she would be like the thirty odd percent of patients for whom the condition would remain as Ocular Myasthenia and not degenerate into Myasthenia Gravis .We also hoped that like the lucky few her condition would go into long term remission after treatment with tablets .All this was not to be as after a month or so we were advised by Dr Vinit Suri , based on the RNS tests and CT Scan that the disease had spread beyond the eyes and that the CT Scan was indicative of a thymoma .He advised Deepa to get on to steroids and then when her condition stabilized go ahead and remove the offending thymus gland through surgery.
So it was we found ourselves Apollo Hospital five days after starting steroids to be under medical observation as in some cases myasthenia patients go critical on taking steroids and need to be rapidly placed on ventilator support and recovered through plasma phareses et al. We kept our fingers crossed that there would be no crisis and thankfully there was none. Deepa’s condition improved and stabilized after the fifth day and the Doctors advised us that they would go ahead with the surgery after the tenth day of treatment with steroids.
It’s a funny feeling getting into the hospital and not being sure when we would come out. In the worst case we may have had to stay for two to three weeks and then go through the operation and post operative phase. We could also get discharged after a while and come back later for the operation. Our prayers were to get quickly into a phase of stabilization, have the operation and get discharged after the mandatory post operative period. Every thing went as per our prayers and desires and after staying perhaps two days longer than necessary Deepa was discharged from the hospital.
Dr Bhaba Das was the Surgeon. He had conducted over a hundred similar operations and almost every one we met had a very good opinion of him .Thus in Vinit Suri and Bhaba Das we were in very good hands.The staff at the Apollo Hospital were friendly and helpful and baring minor glitches the care they provided was very good ..So to was Dr Banu Pant who conducted the RNS test and being also a Neurologist had very good advice to offer on the treatment and prognosis. He really had a very cheerful and friendly disposition.
Deepa remained brave all through the pre and post operative phases .Only briefly did she give in to very natural fears on the night prior to the operation and as she was being wheeled into the operation theatre .Shirish surprised her by flying down from Canada a few days prior to the operation and stayed on till she was well on the path to recovery. Seema and Darshan were also around so Deepa had the warm love and support of her children and hubby in the trying period just before the operation .She took it all very well all through with infinite grace and dignity. The support and prayers of all our near friends, colleagues and family members gave her all the strength and comfort she needed.
The Operation was over in just over an hour and we had the opportunity to see her just after she came out of anesthesia .An hour or so later she was taken off the ventilator support; a very critical stage we were told for myasthenia patients. Thankfully she went through the operation and the post operative period with out slipping into a crisis .It was good to see her progress as she stayed in the ICU for a little over two days.
The first time she stood up from her bed in the step down ICU and was asked to sit down on a chair, she had difficulty doing so and was cajoled into opening her eyes and gingerly lowering her self into the chair .She was soon on to solids and normal diet and it was heartening to see her progress quickly. Soon she was back in a room in the hospital there to stay for a few days taking short walks and recuperating under the care of the nursing staff prior to discharge.
A spin off benefit for me personally was a stepping up of faith and prayers .So to I think my wife’s spiritual leanings will grow stronger .She will emerge stronger as an individual and I believe the family as a whole would too. I do hope she gets to be full of life and spontaneity as she lives her life to the full. I think she’s going to blossom out in a very special way very soon.
Deepa would have to remain on steroids for several more months as per the Doctor .Then she would be gradually veined away from steroids if she can keep the myasthenia at bay. Her treatment and path to recovery seems a long haul although the doctors think she may have need only for minimal medicinal support and soon go into a long term remission .Let’s keep our fingers crossed.