350 Reasons Why By Sunayana Singh With Akshay Rustagi

There are 350 reasons that someone would get ILD (Interstitial Lung Disease). You just need one. And Akshay’s Dad had it. They’re not a hundred percent sure, but doctors think that being around timber for a big part of his life may have been the contributing factor. “We run a successful timber business, and for 3 kms around us, there are wood molecules in the air” says Akshay recalling the beginning of his Dad’s problems. Some other factors that unfortunately contributed to his final illness, were the fear of medical malpractice and the belief – often compounded by the media and rumour mongering – that many in the medical community are just out to make money. Mistrust it seems, can also be a reason.

Flashback to 2008. Manoj Rustagi, Akshay’s 44 year-old father, started to get breathless and went to see the Doctor. He was diagnosed with ILD and started medication. It worked well and occasionally Manoj Ji had to go to the Hospital for a check-up. “I feel odd saying it now, but at the time the doctor used to tell Dad to climb the stairs and used to check his oxygen with an oximeter. We found it ridiculous and couldn’t understand why he was doing it.”

A slip-up was to come two years later. “In 2010,” says Akshay, “the doctor asked us to do two tests (I don’t remember which ones) to check how the lungs were doing. Again, as the cost was high, we sort of thought that it was just an unnecessary expenditure that doctors make patients do, and we chose to skip it. The doctor then prescribed us further medication. We used to laugh and joke about what unnecessary things he was doing. In hindsight, the joke was on us.”

Things went ok up until 2014, when Manoj Ji suffered a bout of pneumonia which was initially mis-diagnosed by a local physician. Eventually he got high fever and breathing was exceedingly difficult. He was eventually admitted to Max Vaishali where the family got a huge shock. In an x-ray of his lungs all they could see was white. “There were no lungs, says Akshay, still in disbelief, “it was just a sea of white.” Doctors advised immediate hospitalization. Manoj was put on a ventilator and sedated for 14 days as fluid was removed from his lungs. The next x-ray was a vast improvement, but the damage was very much there. Over the next few weeks, he was eventually put on to a NIV (non-invasive ventilation) and then BIPAP (Bilevel Positive Airway Pressure). Oxygen was removed after two months and he was sent home.

Akshay recollects the time that things started getting bad. ‘The doctor at the time had suggested that a lung transplant was the only option left really. But we knew so little about it, and whatever we had heard about transplants of the lungs (which were rare then) was off-putting. People advised us against it. We were under the impression that it would not work well, that it was too difficult and survival rates were low. Basically, we had no awareness on the subject. So, we continued with the line of treatment.”

But after 2014 he needed oxygen regularly and was in and out of hospital at the frequency of every 7-8 months. This time in-between hospitalizations kept reducing and, in the beginning of 2019, he needed hospitalization every 1 month. In February 2019 he was admitted twice and eventually what the doctor told the family left them crushed. “They told us that none of the medication was working anymore. They had no more medicines to give him. He had become weak after the latest hospitalization, which had come just one day after he was discharged. He lost so much muscle mass that could not stand. His breathing was so bad that he could even sit upright without collapsing. The doctors gave him a year maximum. We were devastated.”

One of the doctors, Dr. Arjun Khanna once again told us to explore the option for a lung transplant. He fixed up a video call for us with Dr. Attawar in Chennai. We went into it very apprehensive, but what choice did we have? But Dr. Attawar was amazing. He explained to us in detail about lung transplants and how they can save lives. He told us about the survival rates, the entire process, and told us to get over to Chennai and leave everything to him.”

They did just that. Akshay, Manoj and his wife went to Chennai the next day via an air-ambulance and were at the hospital on the 20th of February at 8pm.

Chennai
Once in Chennai at the Hospital, the work-up began. Manoj Ji was found to be too weak to have a transplant. He was advised rest, a change in diet to high protein, and physiotherapy to get in shape for the transplant. For your body to be able to survive a transplant, he had to be fit for it, and he was far from fit. “It was a whirlwind of sorts. I found an apartment right behind the hospital and packed it with oxygen cylinders, a BIPAP machine, masks and all medical equipment that we would need. I had a physio come thrice a week, we fed him a high protein diet so he could build muscle mass. We are vegetarians so that became more challenging. He used to have smoothies daily full of ghiya, khira, etc. Smoothies anyway were better as he would be out of breath by the time he ate! Everything was a challenge.”

There were other challenges while we were waiting. An excellent physiotherapist Kevin ensured that Manoj regained his strength and he was added to the transplant waiting list about a month after they arrived. From then it was a waiting game with a new hurdle every few days. There would be infections, bed sores, nosebleeds, different kinds of infections like the one on this nose from the tight masks that had to be worn constantly.

Akshay feels this took a big toll on the family’s mental health. “We are lucky in the sense that I was able to be with him throughout the 7 months we were there. We were financially capable and our family including my brother and extended family helped with the business while we were away. But it took its toll on all of us. My mother, my brother and Bhabhi, and most of all my father. We had got a call for lungs that were available after just a week of being there! Unfortunately, at that time he was too weak. For the next two months we got 7 calls.

But each time he wasn’t on the priority list, and someone else got the organs. It was so disheartening. He would cry every night and say that ‘bhagwan bhi nahin chahata ki mein jiyon’. We were heartbroken to see him like this. My mother was a rock and looked after him with a devotion I cannot describe. I had lost 10 kgs. I was hyper. I had to ensure we had all the equipment, I felt I had to check on him every half hour, constant calls and trips to hospital all took their toll.

Then the 18th of May 2019 dawned. They got a call at around 12pm. Lungs were available. They were being flown in from Hyderabad, and Manoj Rustagi was first on the list. Everything was a match. Always ready, the family rushed to the hospital and Manoj Ji was wheeled into the operation theatre.
The surgery started at 4 pm and ended at 1am the next morning. Recalling the moment, Akshay says, “The Doctor came out and hugged me. He said it went well and things look good. It will be fine, don’t worry.”

Post-Transplant
“You know how you dream of when everything would be ok and life would be perfect?” says Akshay. “Or as perfect as it could get? It happened to us. I actually have no other way to describe it.”

Manoj was discharged in 7 days and was told he could return to Delhi in a month. But the family did not want to take any chances, so they stayed close to the transplant team for 2 months. Life was good. The constant stress was gone. The new lungs meant Manoj had much more strength and was off oxygen in a few weeks’ time.

They came back to Delhi in August 2019, and by December 2019 the first trip to Jaipur happened. “We had all been through so much that my Dad decided that we had to go for a trip. We went to Jaipur, and he refused any help. He climbed up the steep slope into Amer Fort. It was exhilarating for him. We were all so happy.”

Jim Corbett happened and then Varanasi. The sky was the limit for Manoj Rustagi who had got his life back. He was not allowed to go to work because of the dust, but he works from home and manages one side of the business. Covid has not dampened his spirits one bit. Air purifiers, a good diet and good hygiene keep him safe.

“I would like to thank the donor and donor’s family for their courageous decision to donate their organs and bless my dad with a substantially improved prospect of life,” says Akshay. To all those who are going through this unpleasant situation just hold on, there’s light at the end of the tunnel , A brand new life is waiting for you! Give yourself and those in need an elixir of life by pledging your organs. Live life after death – pledge to donate your organs.”

So, would Akshay recommend a lung transplant for people facing end-stage lung failure? Should they take the plunge when faced with no other options? “Yes!” he says. “There are so many reasons people need to seriously consider this option. My father is alive and well, my family is together, life is much better now than it has been for over a decade. We all appreciate the small things in life that we took for granted earlier, we cherish every moment and look forward to many more.”

Sounds like a lot of reasons. Maybe even 350.