Towards the end of 2012, my father's IPF was getting worse. I knew that in the US, for many years lung transplant had been suggested as pretty much the first option. This is because there are no drugs that work for IPF. Pirfenidone is a drug that helps somewhat but it's efficacy is still doubtful.
So I decided to look into lung transplant in India. I had read in the newspaper about some cases where successful lung transplants had been performed in India. At the time, the successful cases I had read about were in Mumbai and Chennai. Thus began my research.
I googled around for some info but couldn't really find much. Then, I found some press releases from Global Hospital in Chennai. I called them up and spoke to the transplant coordinator, Mr. Netaji who was quite helpful. He mentioned that they had performed around 9 lung transplants (this was in November 2012) and that 7 of them had been successful. In this case successful meant that 7 transplant receivers had made it out of the operation.
My father went down for a lung transplant work up in December 2012. They basically run a large number of tests to make sure you're in good health to receive the transplant. During an angiogram they found that my dad had a 70% blockage in one of his arteries. This meant that he would have to undergo a bypass or stenting before a lung transplant. However, other than that, he was fit to go ahead with the transplant.
They only do single lung transplants in Global Hospital and as far as I know, most other lung transplant centers in India do only single lung transplants. I do not know if this is a process, technology, or experience issue as research has shown that double lung transplants result in greater 10 year survival.
The waiting period in Chennai would be around 2-3 months and we would have to relocate there and live within 1 hour of the hospital in case a donor is found.
I was supposed to get married in February and we hadn't printed the invitations or made any bookings. I asked my dad if we should do the transplant first and then the wedding - but he didn't want to have the transplant. He said that he felt fine and due to the fact that survival rates are low in the medium term, he was not interested in the additional stress. Lung transplant survival rates tend to be poor in the long term. Reality is cruel for IPF patients, their only option may extend their life between 1-10 years but the probability of surviving 10 years is only 40% for double lung transplants and under 35% for single lung transplants.
My dad had his stenting done on January 7th 2013, I got married on February 28th 2013 and he was there to enjoy the wedding and was very proud! Unfortunately, his condition worsened on 2nd March 2013, he was admitted to the hospital on 3rd March and passed away on 5th March 2013. Some of the choices we made along the way were extremely tough and I will talk about them in another post.
Below is all the info that I have been able to find about lung transplants in India. I had started a discussion at inspire.com the day after my father died to try and help people. However, I hope that people here will be able to contribute and share any info they have so that others can benefit from this info.
Lung transplant options in India
- Global Hospital, Chennai. Contact: Mr Netaji (+91-9003098851) Surgeon: Dr. Govini Balasubramani
- Yashoda Hospital, Secunderabad. Contact: +91-40-27713333 Surgeon: Dr. AGK Gokhale
- Apollo Hospital, Chennai. Contact: +91-44-26537777 Surgeon: Dr. Madhu Sankar
If there are any other centers that you know of, please respond in the comments and I will add them to this post. We were told that the cost of the lung transplant would be approximately Rs. 20 lakhs ($45,000). This will include hospitalization post operation and rehabilitation for another 2-3 months.
A word of caution
All the pulmonologists we spoke to in New Delhi seemed to be unaware of the lung transplants taking place in the south. They had a very suspicious attitude towards them - I am not certain if this was justified or unjustified. We spoke to the top pulmonologists at Fortis, Vasant Vihar as well as Apollo, Faridabad. Both were unaware of lung transplants and told my father he didn't need one at the moment. They were wrong.
The same doctors also prescribed branded versions of certain drugs. A certain medicine cost us Rs. 1,500 for a single strip. We later found the same medicine in a generic variant at Rs. 10 for a strip!
Unfortunately, the standard of care even at hospitals such as Fortis and Apollo (in NCR) is quite poor. The doctor charges Rs. 1000 for 15 minutes and will meet you for only 7-10 minutes, in this time, he will check his phone and email several times and talk to his secretary as well. We met several doctors in New Delhi and while not all doctors treated us this way, the majority did behave in an indifferent way. Furthermore, there were times that we visited the doctor's office and the secretary's first question would be "Did you make the payment ?" - there was no "Hello sir, how are you ?".
I am mentioning this because IPF is a disease that needs constant attention. When the disease progresses, you will have to see your doctor more often. Try and find a good and honest physician who takes the time to follow up with your case. A doctor who is interested in helping you either manage your disease or in finding the best treatment options. I am sorry that I do not have a recommendation for you but hopefully someone may come along and share details for a good doctor in the comments.
If lung transplant is your ultimate goal, allow the pulmonologist at the transplant center to handle your case and decide when you are ready for it. There isn't much awareness of the procedure elsewhere in India and unfortunately, doctors do not seem interested in finding out about lung transplants to help their patients. One doctor literally had the following conversation with me:
Me: "So is lung transplant an option ?"
Him: "You will have to go abroad for that"
Me: "I heard there are some options in the south now, can you please guide us ?"
Him: "Really? Well, then you should try and find out about them.."
Me: "Uhh.. okay"
Another doctor told my father that he didn't need a lung transplant, that he was hale and hearty. On my dad's last visit to him, when I had to take him there on a wheelchair because he couldn't walk with ease, I asked the doctor if we should look into lung transplant now. His reply was: "Yes, maybe you should look into it". Note that it was not "I will help you look into it". These are the doctors at our premier hospitals.
I am not trying to scare you, but be prepared for a LOT of indifference.
One of the days I took my father to Apollo hospital (in Faridabad), he was walking in the parking lot towards the entrance with his portable oxygen in his hand. I ran up ahead and tried to get a wheel chair for him. The guy at the door refused. Yes, the guy at the door of Apollo hospital in New Delhi refused to let me take a wheelchair up to my father who was struggling to walk towards the door. His reason was: "Wheelchairs cannot go beyond the entrance." (this entrance is inside the hospital compound, and my father was walking from the car parked inside the compound) In fact, the man could see my father walking down and I said to him "See there, that's my dad struggling to walk here, can I please take a wheelchair ?" His response was: "You should have dropped him at the entrance, whose fault is this ?" Eventually my dad reached the entrance and I made him sit in the wheelchair. I told the guy at the entrance that I hoped someone would help him when he is in need and not treat him like he treated me.
Lung transplant stories from India
- Woman in Mumbai had lung transplant but died 5 months later.
- Global Hospital press release regarding their lung transplant program.
- Tamil Nadu's list of approved hospitals for lung transplant
- Global Hospital gives new lung to Bahrain woman
- Pune woman has lung transplant in Secunderabad
Any more stories ? Please share them in the comments!