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Submitted by PatientsEngage on 5 February 2020

Rahul**, 58 was diagnosed with Chronic Hypersensitivity Pneumonitis which progressed to Idiopathic Pulmonary Fibrosis. He spoke of his daily challenges and his coping methods and the pulmonary rehabilitation exercises. His wife Mukta shares her thoughts on his courageous journey.

#DayInTheLifeSeries

In 2004, I started experiencing cough, but I was highly stressed at work and ignored it. I went to the doctor one time and she gave me an inhaler but I didn’t use it regularly. Soon there was chest pain and shortness of breath. It had been 2-3 months now but I hated going to visit doctors and wait in the dispensary. Finally my pulse rate dropped and my vision became violet. I was rushed to the hospital where I was diagnosed with bilateral pneumonia. The infection got worse and had spread to my kidney, heart and liver and caused septicemia. I was kept in the ICU for 7 days and then a few more days in the hospital till I was given the green chit to be discharged. Not many knew about CHP then and I was given the diagnosis of IPF. After full recovery, I went to see a Pulmonologist Dr. Prabhu Desai who explained to me about my CHP. I was put on steroids (40mg initially which slowly tapered down to 10mg) and had to do a Pulmonary Function Test every 3 months. Later on, when my conditions worsened, I was put on an Immunosuppressant called Azathioprine.

I was quite overweight at the time, almost 105 kilos. A year later, I was also diagnosed with hypothyroidism and borderline sleep apnea due to my daily snoring. Sleeping on one side (the left side is ideal) has helped relieved the snoring.

I used to be highly mobile but after my sepsis , I was in poor health. I am an Architect and my work did suffer at the time. I had resumed work after recovery but in 2005 my CHP had progressed to IPF. At this point, Dr. Desai cautioned me against any air (to avoid negative pressure in the aircraft) and train ( to avoid exposure to any infections because I was on immunosuppressant) travel. This really affected my work because a lot of my clients were out-of-town. By 2010, I could barely walk around my work sites. It would drain me completely to even leave my house eventually. I had even moved my office space closer to home but I couldn’t make it.

Pulmonary Rehabilitation:

In 2012, Dr Desai told me about Pulmonary Rehabilitation. I hired a Physiotherapist who would come home twice a week. The rest of the days, I would do the exercises on my own. Pulmonary Rehab consisted of three key lung exercises:

  1. Breathing : blowing into a balloon bladder to strengthen the lungs
  2. Conditioning
  3. Endurance: cycling, step aerobics, walking or stairs

I love walking so I could easily walk 4 to 6 kms a day. But I was soon restricted to walking only at home in order to avoid external air pollution. It was around this time that I had developed Pulmonary Hypertension.

When I was on steroids, my blood glucose parameters had increased and I was put on Metformin. This turned out to be a boon as Metformin kept my fibrosis in check.

Diet:

I embarked on daily meditation and so I decided to stop all non-vegetarian foods in 2013. However, this caused a severe protein deficiency and I was recommended to start on meat products again. I was happy to just resume fish and egg. I eat an egg daily since then. I also consume lots of fruits everyday ( almost one kilo). I believe that 50% of my thali (plate) should be raw unprocessed foods, so every meal consists of a good amount of salad. I love milk products but have to avoid yogurt and other dairy products as it increases mucus production.

Daily routine:

Mornings: I have to release all the mucus congestion first thing in the morning. I then take my steroid inhaler which keeps me going. Then comes 20-25 minutes of meditation followed by a cup of tea. I always do the daily crossword in the newspaper to keep my mind active and prevent the effects of hypoxia ( low oxygen levels). Then I have my breakfast which is an egg, toast and lots of fruit. I then do my pulmonary rehab exercises of breathing and conditioning.

Afternoon: I have to do a mucus release again every 4-5 hours. I always lie down after lunch to rest as I feel exhausted around this time.

Evenings: I have my bath which is a big aerobic exercise in itself. I then do my daily walk and cycle or climb stairs alternatively. Before I go to bed, I take my steroid inhaler again. Insomnia is a side-effect of this condition but all these exercises do help me sleep.

Present condition:

Since 2015, I am on oxygen 24 hours a day. I require 4 liters per minute. I have a 1500 liter cylinder on a trolley and a portable 700L tank which a helper can carry if I need to step out. I don’t go out every day but am not completely home bound either. When I go out I carry both my oxygen tanks which can last me around 9 hours. I live on the 3rd floor of a building with no lift. Because of my daily exercises, I can climb the stairs easily and I think that muscle memory has retained. I started with Homeopathy few years ago and I believe that helps me prevent infections. Ayurveda is not a curing science but helps me balance my chakras.

Family:

I have no family history of IPF, I think my grandfather had some lung condition but was never diagnosed. My wife and kids have been very supportive. My wife was extremely stressed after my diagnosis and had fallen sick herself. She took up classical singing later on and that was very helpful. She also meditates with me daily. We had a very robust lifestyle which we had to give up so it wasn’t easy.

Coping:

Looking forward to something is essential, small targets help such as watching my kids grow up etc. Every day is a struggle! Some days it is difficult to even walk from my bedroom to the living room.

Biggest Challenge:

Initially it is always the question of “why me?”. Western medicine caters to the physical nature and ignores the mental and emotional state of a being. When I started meditation, I realized that everything has a cause and effect. There was nothing I could do but accept my situation. But acceptance is to surrender your ego and come to terms with your weaknesses. Acceptance has brought me a lot of peace!

Advice to other Patients:

Pulmonary Rehab and Meditation are my recommendations! Think of everyday as a bonus. Take life one hour, one moment at a time and be happy.

Future concern:

I don’t worry about my future. I have faith in the higher power so it is his job to worry not mine.

**With deep regret we heard that Rahul passed away in September 2020. But the experience and lessons he shared will continue to support many other patients with Pulmonary Fibrosis. And we will always be grateful for his willingness to share. 

On his first death anniversary, we have updated this interview with his wife's tribute. His wife Mukta, remembers his courageous journey and pays him a tribute.

My husband was a true warrior in every sense. He gave a tough fight to this life threatening disease. He was a very positive and hard working person with faith and loads of will power.  It is not easy for a person to suddenly hang up his boots one day due to ill health and wind up everything. It was his spiritual nature that made him come to terms with this deadly ailment.  He was very independent, even on the day he passed away, he had completed his pulmonary exercises, done his meditation, had his bath on his own, which he insisted on. 

It was a very difficult journey but he walked through it with his head held high! Never depended on anybody for any kind of help, except doing things which would burden his lungs like moving his oxygen machines, or carrying heavy books etc. When there is love and you care for one another lot of things get easier. I am proud of my children too as they were a part of this trying and difficult journey too (son was 8 and daughter 2 when he was diagnosed with this illness. Today my son is 29 and my daughter is 22)but they walked it with grace! Not once have they tried to gain pity or get special treatment from school or teachers or friends by talking about it!They took everything that came their way gracefully and worked very hard. 

There is so much to say about Rahul, but for the people who have closely known him, Rahul was a true warrior and a determined fighter. He fought his illness for 20 years when the doctor had given him only 7! In this journey his “never die “spirit has rubbed on to the three of us. His ever smiling face, his zest for life, his hard working nature, his love for his family, the pride he used to take in all the small achievements of his children and me will keep us motivated all our lives. Today he is not with us on this physical realm but his strong positive aura will continue to guide us.  We salute the tough fight he gave this illness. You are in a better world dear Rahul. Will always be proud of you. I am blessed to have met you in this life.  You have taught me so much! You will always remain an inspiration to us and many others tackling this life threatening illness. 

Will cherish the memories till we meet again.

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