Tushar Kataria, 51 received a shocking diagnosis of Interstitial Lung Disease (ILD) 7 years ago. He shares his challenges of going through a lung transplant in 2018 and how his experience has changed his approach to health and life.
How did you first find out that you had Interstitial Lung Disease (ILD)?
In May 2016, I was on a vacation in Thailand with my family and some friends. I felt the first symptoms like breathlessness and running out of breath, but I did not feel the need to use oxygen. I just felt that probably because of my weight. I was feeling breathless. Once I got back to my hometown of Bombay, I got myself checked by a doctor. After examination, an X-ray was done following which a HRCT scan was suggested which revealed that I had bilateral lung fibrosis that was basically caused by an UIP pattern of Interstitial Lung Disease (ILD). I went on to consult a chest specialist in Bombay who put me on medications and supportive care to stop the progression of the condition, which continued for about six months.
What was your reaction to the diagnosis?
My mother at the age of 52 was diagnosed with ILD. She passed away a month after that. This was in 2003. I had lost my father in 2011, so when this diagnosis came about, it shook me. I had to think about my wife and two young daughters. It would have completely broken any other person, but we decided as a family to take it one day at a time.
How did you get to the stage of the lung transplant?
In December 2016, I had my first exacerbation for which I had to be rushed to the hospital, after which the doctor put me on 2 liters of supplementary oxygen which I had to use at rest, because my condition had progressed a bit. As 2017 began, my condition progressed even further and by around May, June 2017, I was in a really bad shape. We spoke again with the doctor, and he suggested that I should look for a lung transplant as an option for this condition. We began exploring possibilities of how to go about it, as we had no idea. At that time lung transplants were comparatively unheard of in India, so the US seemed the only logical option.
Let’s talk a little about your lung transplant journey.
We began preparing to go to the US. I had sent my reports to around three centers in the USA. I think it was the Cleveland Clinic, Temple University in Philadelphia and the third one was John Hopkins, in New York. We were in the process of communicating with them when I came across this group called “Lung Transplants India” on Facebook and I happened to speak to the creator of the group, Mr. Abhishek Arora. He mentioned that his father had undergone a lung transplant at a multispecialty hospital in November 2015. He explained the entire process to me and assured me that his father was doing well post-transplant. The conversation made me feel a little relaxed, thinking that I may not have to travel to the US, and I could get it done right here in India. I started my communication with the same hospital team in Chennai. They informed me that I would need to go to Chennai for an in-person evaluation following which the need for transplant and further course of action would be determined.
Unfortunately, during that phase, my condition further progressed, my requirement for oxygen increased, and my physical health deteriorated drastically. My movement was very limited. So, once things started rolling into place, I took an air ambulance to get to Chennai and my evaluation lasted around 10 odd days, which involved a combination of intensive physical examination, blood tests, radio-imaging tests and thoroughly tested me right from head to toe. In the end, they took a video consent from me where they explained the whole procedure and risks and what to expect. Thereafter, they put me on the transplant list. Then came the hard part- the waiting period to find a suitable donor.
Thankfully, in my case, my wait time was around two months. To be honest, even those two months seemed to be a lot longer for me because my condition was rapidly deteriorating. So, I was desperate and reasoned with the doctors about the urgency with my declining health to expedite finding a suitable donor as soon as possible. I then found out that no matter where you go for your transplant in India, your name is registered in that state only which narrows your chances of finding a donor at short notice. I requested the doctor to widen my search for a donor pan India because I felt that I was not in a condition to pull through any further. It was the last straw for me. So thankfully, after I had this meeting with them, just a couple of days after Diwali of October 2017, I got a call from the hospital that they have found a suitable match. I was taken into surgery at around 2.30pm. My surgery lasted around 14 hours. I was wheeled out at 4.30am the next day, after which I spent around 10 days in the ICU, slowly recovering. When the doctors felt that I had recovered reasonably, I was shifted to the ward. I spent another 10 days in the ward and after the total stay of around 21 days in the hospital I was discharged.
What was the journey like after the transplant?
After discharge, I stayed back in Chennai, simply because the doctors had requested that in case any complications arose, it made sense to be close to the hospital, which made complete sense to me as well. On the 22nd of February 2018, I finally flew back to Bombay after getting the go-ahead of the doctors at Chennai. My post-transplant recovery and recuperation, has been comparatively smooth. Yes, I have faced small roadblocks, small speed breakers, which usually are a part of every patient’s journey. When you encounter fewer complications post-transplant, you express gratitude to God for experiencing a relatively smoother journey than others. The team at the hospital where my transplant happened was always around. The nursing staff, physiotherapist and allied staff also did an exemplary job of supporting my recovery post-transplant. They were very careful to prevent any postoperative infection, the team provided me with a nurse who was with me 24-7. There was a separate room allotted to me in the flat that I had rented out and the team of the hospital sent a special sanitizing team who personally sanitized and cleaned my room as per their protocol and specifications. I was very weak and could not go for my shower and was bedridden for a period of 2 months, so everything happened on the bed. Gradually, I started recovering under the care of the nurse, who ensured that everything was running smoothly. He was in constant touch with the doctors and helped to remove the stitches. Once I got back to Bombay, I started leading my life.
It’s been almost seven years now down the line and I have had a couple of incidences here and there. For instance, in 2022, I suffered a pulmonary embolism, which was basically a clot that had formed in my leg and traveled up to my lungs and impaired my breathing. It was taken care of by the doctors in Bombay. They put me on anticoagulants. I am now under the care of a chest specialist in Bombay, and he is in touch with the team at Chennai.
Since my transplant recovery, I have traveled; have gone abroad; have taken vacations and I’m leading a normal life. I do continue to take advised medications and require periodic testing, which is a part and parcel of every transplant patient’s life. There was a small incidence of COVID as well. I had unfortunately got Omicron, but then again, you know, it was not as severe, so the doctors managed it effectively and complications were prevented.
How did you manage office work?
Before the transplant, I would keep an extra Oxygen Concentrator at office and eventually when I needed it all the time, I purchased a portable one for my commute to work. My office work while I was in Chennai was managed by my trustworthy staff and I was in touch regularly and connected with them over phone.
What changes did you have to make to your lifestyle?
The major changes that I made to my lifestyle were to regularize my eating and sleeping habits and timings. I now finish eating dinner by 7.30 pm every day, whereas earlier my dinner timings were very erratic. I also began sleeping early so that my body would get sufficient rest. These changes helped in building a healthy routine. I do not venture out without wearing a proper N95 certified mask and usually avoid visiting places that are overcrowded. However, sometimes I do visit the cinema hall to view a film. After all, you have to start living your life. An influenza vaccine is usually recommended by the doctors that I take annually. My condition doesn't affect my social and work life because apart from not visiting very overcrowded places, I do meet my friends and business associates and I also visit places of entertainment.
How do you stay fit now?
I was in constant touch with my nutritionists in the initial stages as raw food was a strict no during the initial stages post transplant. The doctors recommended a protien rich diet to enable quick recovery and recuperation which can include protien shakes. Since I am a vegetarian, options for protien intake are quite limited. Hence, we would balance the diet in a way that I would extract the most out of my limited options. My liking for eggs helped me as I was able to switch to eggs anytime I was unable to continue with the usual diets. However, every person is unique and so are their dietary requirements. For exercise, I undertook mild forms of exercise along with yoga and pranayama. Once I was settled with the new organs, the doctors allowed me to visit the gym for increasing the level of exercise along with weight training. Again, I would like to emphasis that each person is different and so will be their recovery protocols. It would be best if one took the doctors advise and continued ahead. Once you get accustomed to your diet and exercise, you can increase or decrease as per your physical needs.
Have you tried complementary medicine or therapies, like homeopathy or ayurveda? If yes, did it help?
Prior to my transplant, I tried a number of therapies, including acupuncture. Although these provided brief moments of respite, they did not offer any significant relief.
What medications are you currently on?
Currently, I am on immunosuppressants and a dose of steroids which I need to take for a lifetime. Apart from these, the doctors may prescribe other medicines as per the patient's condition and medication plan may differ from patient to patient. Also, doses of medications are altered as time goes by. I was being administered anti fibrotic drugs prior to my transplant. For supplementary medicines, the doctors advise me to take protein powders to bolster muscle strength. I am not taking any herbal or alternative medicines as of now.
Were there any side-effects of the medicines? If yes, how do you manage them?
The immunosuppressants are known to have some or the other side effects which the doctors manage by timely blood tests, tweaking the doses and also suggesting dietary changes to support the medicine doses. Steroids can totally mess up your body and have lots of side effects. I am currently witnessing the beginning of steroid induced cataract and I have been advised to administer eye drops for the same. As for managing my vitals, it's a combination of diet, exercise and timely checkups to ensure that I am not taken by surprise.
Did you see a counselor ever for mental and emotional support? Were you offered counseling by your doctor?
As part of the pre-surgery work-up, counselling is offered to all transplant patients and accompanying family members. Outside of that, my family and I never saw any counselor. We managed to talk it out amongst ourselves. My daughters stayed behind in Bombay with my mother-in-law, so that school didn’t get disrupted. They were most mature for their ages and supportive.
How has your family supported you? Who has been your biggest support/companion through it all?
My family has been my biggest support. Throughout the entire ordeal, my wife was by my side. My sister, my cousin brothers, and a few of my friends remained by my side throughout the entire duration.
What are the most challenging parts of your condition?
The breathlessness that intensifies as the condition progresses proved to be the most formidable challenge. The medications administered to you are of high potency, thus exerting a significant impact on your body. It is a herculean task to keep yourself positive and to keep going despite such tough and uncertain scenarios.
What are some key takeaways you would like to tell our readers?
- Never neglect a symptom, however simple it may seem. In hindsight, the dry cough and shortness of breath on climbing stairs for the preceding months of my diagnosis was a sign, and if I could have seen a doctor, things would have been detected earlier. I was lucky to get a donor in time and time was of essence, so an earlier diagnosis and timely intervention matter.
- Never take life for granted, live life with gratitude. My experience with the transplant has changed my outlook towards life and health.
- Always prioritize your health.
- Lung transplants do happen in India and there is good teamwork and coordination with specialists on the team to ensure management of complications, any side effects of medications related to liver and kidneys. Transplants are safe and even though every journey is unique, I can vouch that one can lead a normal life after a lung transplant.
- For anyone looking for social support and talking to people with experience of lung transplants, one can visit- https://www.facebook.com/groups/lungtransplantsindia/?ref=share&mibexti…
