Dev Yadava, 72 from Mumbai was diagnosed with Idiopathic Pulmonary Fibrosis and in the 13 years since he has become an informed patient and continues to try all kinds of treatment options to deal with IPF.
Please tell us a bit about your condition
In Jan 2006 I was diagnosed with Idiopathic Pulmonary Fibrosis (IPF) - Non-specific Interstitial Pneumonitis (NSIP) which causes scarring (or fibrosis) of the lungs. It falls under the broad group of Interstitial Lung Diseases. It is idiopathic which means that there is no known cause for it. As far as I know no members of my family have this condition.
What were the early symptoms? What made you go see a doctor?
In 2001, I had to go to my friend’s house in a remote town. On our way back, the air-conditioning of the bus failed and windows were opened, which caused a lot of exposure to dust and fine particles. Since then every winter, I would develop a very dry cough that would last for weeks, along with shortness of breath while climbing stairs. At the time, I tried allopathic meds prescribed by my GP.
In July 2005, I got a complete health check done. The hospital referred me to their Chest Specialist after seeing my X-ray. Their Chest Specialist dismissed it as a cold and sent me home. After 3 months of no improvement in my cough, my daughter (who is a doctor in the US) coaxed me to see another Chest doctor. He heard crackles in the lower fields of my lungs and prescribed X-ray, pulmonary function test, High Resolution chest CT scan and some blood tests. Reports showed Pulmonary Fibrosis and soon a lung biopsy was scheduled via bronchoscopy, which confirmed the diagnosis. It was now January 2006. When I first read up on my diagnosis, it was a frightening experience because everywhere it was mentioned that prognosis was only 3-5 years.
Please describe your experience of managing your condition.
I was initially put on steroid pumps and 5th generation antibiotics. However after 2 months of that, my hands started shaking, my voice became hoarse and my cough was not much better. I decided to see a more experienced Pulmonologist for a 2nd opinion. He told me steroids would not help me because my fibrosis was brute, and put me on Asthalin, Pantoprazole and cough drops. Next, I went to see my Homeopath who put me on meds to boost my immune system. Later on, I send all my reports to Baba Ramdev @ Patanjali and they sent me a bunch of pills and encouraged kapalbharti exercise. I was taking all the 3 therapies simultaneously with the consent of my Allopathic doctor. Overall, I was feeling better and was able to manage my cough.
In 2012, I had a flare-up with my fatigue, cough and shortness of breath. My doctor informed me about this new drug by Cipla called Pirfenidone and started on that.
What is your present condition?
It has been 13 years since my diagnosis and my doctor tells me I am the oldest survivor of IPF that he knows. At rest or while sitting, my O2 saturation is 95% but if I get up to open the door, it drops to 87%. In the morning, by the time I finish my daily bathroom ritual of shaving, showering etc. it plummets to 82%. That causes a lot of fatigue and I usually end up lying down because I can barely lift my arms at that point. My eyes too get very tired after any physical activity. My tests show that my DLCO* is down to 23 which is causing this deconditioning. I’m not on the oxygen cylinder yet! I believe that also leads to oxygen dependency which I want to avoid till I can. When I do my exercises at home such as walking or riding the stationary bike, I use a portable oxygenator. I also carry my oxygenator if I have to travel or commute for a more than a few hours.
Have you had any related complications from your primary condition?
I have developed sleep apnea as a result of my IPF. I now wear a CPAP (Continuous Positive Airway Pressure) mask in order to sleep every night.
What was your course of treatment? What medications are you on currently?
For my IPF, I currently take Pirfenidone, Serapeptase, Doxycycline, Pantoprazole and supplements of Giloy, Curcumin and Tulsi. I have found that taking a Crocin right away helps resolve a coughing fit. Besides that I am on medications for my hypertension, benign prostate hyperplasia, arterial clot and pulse control. I have also had bilateral knee replacements and cataracts operated on.
Were there any side-effects of the medicines? If yes, how do you manage them?
Most drugs do affect the liver and kidney functions. I do regular tests to make sure all my lipids are in check.
What kind of specialists (including Physio/ Occupational therapist/ Psychiatrist etc) do you consult and how often?
For about 3 months, I did go for Pulmonary Rehabilitation but it was getting too tiring. So I bought a stationary bike that I work out on from home. I also started kapalbharti daily.
Luckily my doctors are all in Mumbai. For any distant medications such as my supplements and Ayurvedic drugs, I do mail orders. Once while travelling to the US, I did seek private consult from a renowned Pulmonology Researcher at Texas University.
Have you learnt anything in managing in your condition that you wish you knew before?
I have learnt through the course of my illness, that a lot of the standard treatment drugs are actually ineffective for IPF.
How did you mentally/emotionally cope with your condition?
I’m coping but it’s tough! It’s tougher for my family. I find that being an informed patient is the best way to manage your condition. Self-education has helped me understand and deal with my condition better.
How has your family and friends supported you? Who has been your biggest support/companion through it all?
My wife surely has been by my side, but sometimes she too does not understand the complexity of my illness.
Even my friends don’t understand my illness. I have found that 95% of the people don’t know what it is. People realize it’s serious only when a patient becomes critical.
What were some of the challenges you faced and what is your advice to patients who face similar challenges?
One of the challenges is that most doctors in India are not well informed about the disease and not up-to-date with the current research. There are less than a handful of knowledgeable Pulmonologists even in a metro like Bombay and none who specialize in IPF per se. These are also the ones who are incredibly busy and lengthy waiting lists and have no time for their patients. When I had gone for a check-up in the US, the Pulmonologist there had spent 75 minutes with me!
My advice to other patients would be to take your medications regularly. In addition, try different therapies (with the consent of your primary chest specialist), one at a time and see how it works for you.
How has your diagnosis changed your life perspectives and ambitions? What changes have you made to your lifestyle?
Life has changed it completely! I was a dynamic entrepreneur running my business, travelling and working about 12 hours a day. Now all of that has come down to zero. Since 2015, I have stopped all international travels and retired for the most part. I keep an office that I go for 2-3 hours daily just to step out of the house. After every basic activity such as a bath, exercise, lunch, etc, I have to take a nap to recuperate.
Social outings have decreased too because I get tired going out for more than a few hours with chatting and riding in the car.
What keeps you awake at night?
I keep questioning “why the hell has God given me this disease?”. Even for cancer, there are certain treatments that provide hope to the patient. In IPF, there is no such hope. The “why to me” question continues to haunt me!
* DLCO is a medical test that checks how much oxygen is reaching the blood from the lungs. Normal percentage value for DLCO is about 80.
With deep regret we wish to inform our readers that Mr. Dev Yadava passed away on 02nd August 2022. He provided support to many persons with lung diseases and their families.
