I know this information is long overdue and I apologize for how long it has taken to get this out, but I was waiting for more clarity on the situation.
Last November, I came to see my mother and was in Bombay to attend Avyay's wedding. Afterwards Nina and I spent some time in Bangalore before I returned. I first noticed that I was tiring out unusually quickly when Nina and I were walking around Prabhuddhalya. Then at Babi's house, I was getting short of breath when going up and down stairs. Looking back, this started while I was in Bombay. I had assumed I was tired from the trip and needed to go home and rest.
On the flight back, I got very sick (vomiting, headache, nosebleed, chest pain, shortness of breath, unable to lift anything, etc.). I went to the emergency room after I arrived back in California. I was immediately tested for heart attack and that was ruled it out. After a few hours of testing and observation, I was diagnosed with pneumonia and sent home with antibiotics.
After two separate courses of of antibiotics, I did not improve and was coughing a lot. I was then put on supplemental oxygen. An electric oxygen concentrator was installed in my house. I get the oxygen through a long tube that lets me walk around the house. I went through several tests to determine whether I had any specific infection or known condition. They all came back negative (meaning no specific condition was detected). At this point, we canceled our family holiday plans to go to Portugal. Nina, Maya, Stephen, and little Sonia came to California to spend the rest of the month with me.
I started on a course of steroids and immediately started to cough less and breathe more. However, I also got severe acid reflux from the steroids. My throat was sore all the time and I could not talk much (one reason I did not call anyone). This was a positive sign that I had a manageable prognosis and we had a low key and restful Christmas.
By New Year, I had received a portable oxygen concentrator that fits in a backpack and is battery operated. So I could leave the house for few hours. We went to a wonderful "Noon Years Eve" toddler rave at a nearby museum. Imagine hundreds of little kids (with some parents, and a few grandparents) all dancing to peppy music, a magic show, and a huge balloon drops! Also, for those of you with little kids, check out "Sing with Bella" - she was the star of the show.
In early January, We had a follow up consultation with the pulmonologist. Unfortunately, he was not encouraged by the pace of my progress. So he added some anti-fibrotic mediation and referred me for extensive medical testing. The last few weeks have been a whirlwind of appointments - about 15 major diagnostic procedures, 50 different lab tests, and multiple consultations. I have one more week of this before the entire package of results will be reviewed in a case conference at the end of the month. We have also scheduled specialists to get second and third opinions. So we are hopeful that between the test results and these different experts, we will be able to learn more about exactly what my condition is and what treatment options I have.
So far all the test results have have been clean and showed no issues. I am not in any pain, though I am on continuous oxygen. However, my stomach is not too happy and I have had to give up my beloved daily chai and spicy food. Nina, Maya, and her family went back home for a bit. During that time, I had a lovely visit from my work team, who stayed with me and attended a conference. One of them substituted for me on a panel and I heard she crushed it! We spent the week transitioning my work to them and I am very excited with where they are taking it.
Maya and Nina are now back here and will be staying for the duration. Mina (Deepak's youngest daughter) will be here for a few days while she is on a work trip. I do hope to see more of you over the coming months.
The next few weeks will be crucial in getting more information. I will keep you posted as I know more.