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Submitted by PatientsEngage on 24 October 2020
A woman in a yellow indian dress standing in front of plants after her lung transplant

It all started with a black-out on a staircase. Neeta Seth, walks us through the crooked road to a diagnosis of Interstitial Lung Disease which kept worsening till she was advised a double lung transplant. A journey of treatment across 3 cities, the challenges of getting the transplant and post transplant care and rehabilitation.

Going down the memory lane, I write about 13-14 years back. It was one of the usual morning schedules, when all the daily chores of the day were done. I was running up the stairs and I had a blackout on the fifth stair. I held on to the railing and sat down then and there. After a few minutes, I was better and resumed climbing. The next day, it happened again. I was standing in the guest room and had the same feeling once again. I quickly sat on the bed as my head continued spinning. Something was amiss. Although I recovered after some time, my husband was called from office. He came accompanied by a doctor. The doctor examined me and at first I thought I had a stroke, but soon realised that it was not so. Nothing was diagnosed.

Interstitial Lung Disease Diagnosis 

My father and brother arranged for a clinical checkup at Apollo hospital-Delhi. It was there that I was diagnosed with Interstitial Lung Disease (ILD) of the lungs with pneumonitis. They suggested Dr Farooq E. Udwadia at Breach Candy hospital (Mumbai) for treatment. When I met him, he told us that he suspected bird allergy —allergy of pigeons to be the cause after I apprised him of my routine of feeding pigeons daily. He educated us that pigeon feces dries out into a fine powder which become aerosol and when inhaled enters the alveoli, affecting the functioning of the lungs.

Must read: Can pigeons cause lung disease?

Doctor put me on steroids Medrol (16 mg) which he tapered gradually. The breathlessness, fever and discomfort settled in about one year. Initially I used to go to Mumbai from Ahmedabad at intervals of two weeks, then monthly, two months and so on for almost two years. I could travel and lead a normal life. It was then that Dr. Udwadia suggested that I find a local pulmonologist here in Ahmedabad. He wrote a prescription of the minimal dosage of steroids. He even prescribed, in case I became unwell, fresh CT Scan be taken and the steroids be hiked up.

To my bad luck, when I did fall sick, after two years gap, the local doctor failed to revive my health. I learnt Dr Udwadia was travelling overseas at the same time. I was lost as I could not find a new doctor. In such a stressed situation, with God’s grace, a silver lining appeared in my life. Dr Jaykumar Mehta, a pulmonologist at Zydus hospital, Ahmedabad was introduced to me. After innumerable tests, he started with his treatment and in a couple of months I was better. I was put on heavy steroids, which sadly enough caused my weight to shoot up from 60 kgs to 82 kgs.

Impact on my social and personal life

It was depressing; none of my clothes would fit me. If I did go out, people would stare at my excess weight and my moon face (swollen). It was thoroughly embarrassing. I could not go out as the doctor restricted me from dusty and crowded places. I, being a social person, was told to remain at home. I was miserable when I saw friends zoom away in their cars dressed in their best attire for celebrations and parties. It was then I took to some religious discourses which helped lift my low spirits.

Dr Jaykumar’s treatment went on for six months and he gave me the green signal to go to Dr.Udwadia thereafter. To my surprise, in 2-3 consecutive visits, Dr Udwadia once again said I was stable but this time he warned me ”go slow”, he said. He told me only 50% of my lungs were working but I could lead a normal life. He allowed me to travel to Punjab to visit my old ailing parents.

Worsening Lung Disease 

Shortly after my beloved mother passed away and consequently my father too, it brought a lot pain leading to aggravation of my disease. In addition, during the cremation, some relative pulled me near the full-lit pyre as a courteous act of sympathy. I could hardly breathe. The smoke of the fire seemed to have further damaged my lungs. That triggered my deteriorating health. 

Dr Udwadia sent me to his son Dr Zarir Udwadia who specialized in ILD care. He told me that the lungs had been severely damaged and prescribed immunosuppressants. On my 3rd follow-up with him, he informed me that the lungs were working only at 33% capacity. He explained that double-lung transplant was the only solution.

I was too scared of surgery. I returned home and decided to continue with the same medication under the supervision of the local pulmonologist. But my health was deteriorating, as I could hardly breathe. I would cough continuously and feel suffocated. Nights became very difficult. I could not climb up anymore to my bedroom and started to sleep in the guest room on the ground floor. As my oxygen level would fluctuate, a night nurse had to be employed to supervise the oxygen level.

Double Lung Transplant Advised

That is when Dr Jaykumar suggested that I be put on artificial oxygen. I would not agree, my younger brother and sister flew down from Delhi to convince me that it would be best for me. I was put on 5 ltrs of oxygen yet, I was uncomfortable. In one of those suffocating moments, I told Dr Mehta not to treat me but to let me go, I had no wish to live. He wisely rang up my husband and told him that transplant was the only answer.

It was my daughter in Kolkatta who fixed up an appointment with Dr T.Sunder , the surgeon, at Apollo hospital in Chennai. On 23rd March, 2019 my husband and I left by an air- ambulance for Chennai. My daughter accompanied us. I underwent several tests for 8-9 days. To our delight, the results were all positive. I was asked to wait for a donor in a rented apartment.

Waiting for a Lung Donor

I thought on reaching Apollo hospital, Chennai, a miracle would occur. I assumed I would get lungs overnight, and return happily thereafter. In reality, it was not so. While waiting in the rented apartment, I was called three times to the hospital for prospective transplant whenever a donor became available. Alas! Three times, I was kept in the hospital for a couple of hours and then sent back as the donor lungs were unfit.

The wait extended for six months. Staying in an alien town with an alien language, did become depressing, at times. My husband stuck to me like a rock. Both my daughter and son were there alternatively. My siblings kept visiting to give me company. I was on oxygen all the time. It was in the sixth month of waiting, September 17th, 2019; we were called at night to the hospital. Finally, our prayers had been answered. I was going to get a double-lung donor that night. My husband and son-in-law were there with me. We were delighted.

As soon as the pre-surgery tests were done, I was admitted and was injected with anaesthesia. I really do not know anything after that. The surgery took place for seven hours I was told. Post-surgery, I stayed unconscious for almost 12 hours in the ICU. When I did wake up, I could see so many tubes attached to my body. The doctor told me that the operation was successful.

Post Transplant Complications

It was on the fourth or fifth day that I started sweating late at night. My surgeon Dr. T. Sunder was called at 4 am. I was relieved to see him, as I had sensed that I was not well. I went into a deep slumber. On waking up 13 hours later, I was told that my surgeon and the Infectious Disease specialist, had been working on me all night. I had developed some infection called Klebsiella that could be dangerous to my new lungs. Both the doctors kept pumping heavy drugs to bring down the infection. After 39 days in the ICU, the disease was under control. Thereafter, I was moved to CCU. I knew no count of days or weeks. 

Rehabilitation and Physiotherapy

I was recovering gradually. Physiotherapy was started although I was very weak. I could not stand or walk. I had been lying down for almost one and a half month. There was complete muscle loss in my body. I could not talk because of the trachaestomy. The whole situation made me feel dejected. In fact, I could not get up at all; I was completely bed bound. Since the intravenous line was in my left hand, using my right hand, I would express my needs by writing it down on a paper. There was also a food pipe inserted in my stomach. Additional to the food, innumerable medicines were injected daily. With a heavy heart, I spent Diwali in the hospital. My son had to be called from the USA, as my husband and daughter had to be back home for Diwali puja.

When I did become stronger and started to walk a little with the help of nurses and the physiotherapists, my morale was boosted. It was in late November, that I was brought in an ambulance to our rented residence at Chennai. Two male nurses and a female nurse had been employed. They remained with me for 24 hours. It was with the assistance of this staff, I gradually learned to walk. Once when the pulmonologist herself was unwell, Dr. Sunder himself came to our rented apartment to perform the bronchoscopy. Every comfort was met with whether it was blood tests or Physiotherapy.

Recovery and looking forward to a bright future

With time, the crooked road now took a miraculous turn. I was better. I could walk and the trachaestomy tube was finally removed. I was weaned off the oxygen pipe gradually, providing me the freedom to walk and talk. I surely did have a reason to smile now. In fact, many times, I would put my hand in front of my nostrils and wonder where the oxygen tubes were gone.

It was on 5th of January, 2020, I was permitted to leave Chennai for my hometown Ahmedabad. My heart was thumping with joy. There was no end to my happiness. I did not know whether to thank the good Lord Almighty or thank the team of three surgeons, my husband, children, or siblings. 
It has been nearly 10 months now, post my surgery. I am leading an independent life. No supports of oxygen pipes. I am walking on my own, bathing on my own and doing Physiotherapy regularly. All food intake and medicines are taken orally.  I sit in the verandah breathing fresh air, waiting, for a favourable time to go outdoors and share happy moments with my loved ones.

It was the goodness of all the doctors, my family and friends that I have covered the journey till now. Above all, it was God’s mercy that I live to tell my tale.

My request with folded hands to all ILD patients - Remember, it is a harsh disease. Never take advice from here and there, instead go to a specialized doctor in this field. Don’t expose yourself to known triggers like dust, pigeon feces, smoke etc. Now that I have entered the road to healing, I walk with hope and faith for cure.