Pulmonary Fibrosis in Indiahttp://www.pulmonaryfibrosis.in/2017-02-06T12:00:00+01:00Pulmonary Fibrosis in India Facebook Group2017-02-06T12:00:00+01:00Ashraytag:www.pulmonaryfibrosis.in,2017-02-06:ipf-india-support-group.html<p>Pulmonary Fibrosis is a terrible disease. However, what's even more disheartening for both sufferers and caregivers is the indifference that we face. It is for this reason that I've started the <a href="https://www.facebook.com/groups/1834600880148058/">Pulmonary Fibrosis in India Facebook Group</a>. The aim of this group is to help us share ideas with each other and also to give each other much needed support.</p>
<p>The group is a closed group so that your privacy is respected. However you can discuss treatment options, recommend good doctors or support staff, and even talk about how you or your loved one are coping with PF.</p>
<p><strong>I invite all our readers to join the <a href="https://www.facebook.com/groups/1834600880148058/">PF in India Facebook Group</a>. Together we can deal better and heal better.</strong></p>An international roadtrip for IPF Awareness2015-07-27T22:00:00+02:00Ashraytag:www.pulmonaryfibrosis.in,2015-07-27:ipf-roadtrip-fundraising.html<p><a href="https://www.facebook.com/pages/Breathe-free-live-free-A-road-cum-rail-trip-for-IPF-awareness/335168063359348">Breathe free, live free</a> is an expedition being organized to raise IPF Awareness across China, Laos, Thailand, Burma, and India. The idea is to raise grassroots awareness for IPF through a roadtrip, by meeting people, distributing pamphlets, etc.</p>
<p>You can donate to the cause at the <a href="http://www.firstgiving.com/fundraiser/shashank-gangil/Breathefreelivefree">first-giving page</a>. All proceeds shall be donated to the <a href="http://www.pulmonaryfibrosis.org/">Pulmonary Fibrosis Foundation</a>. The goal is to raise and donate $5000 or more towards IPF Research.</p>
<p>If you are unable to donate, then please <a href="https://www.facebook.com/pages/Breathe-free-live-free-A-road-cum-rail-trip-for-IPF-awareness/335168063359348">like the Facebook page and invite your friends to like it as well</a>. Awareness is the first step to a cure!</p>
<p>The initiative has been started by a friend who lost his father to IPF. I personally applaud his courage and dedication, it is not easy to undertake such a measure after a huge loss.</p>
<p><strong>Please show your support by <a href="http://www.firstgiving.com/fundraiser/shashank-gangil/Breathefreelivefree">donating to the campaign</a> and if you have more ideas on how to make it more successful, do please share in the comments.</strong></p>New resources on Pulmonary Fibrosis2013-10-06T19:05:00+02:00Ashraytag:www.pulmonaryfibrosis.in,2013-10-06:new-resources-on-pf.html<p>A few weeks ago while organizing our campaign for Pulmonary Fibrosis Awareness day I came across an interesting blog. <a href="http://www.pfdoc.com/">Dr. David Lederer is a pulmonologist</a> based in New York City, USA and he writes about pulmonary fibrosis. What's great about Dr. Lederers' initiative is that he takes the time to explain things really well to his readers. Plus, coming from a doctor's perspective, his opinions and advice are definitely reassuring and medically sound.</p>
<p>I've been following his blog for the past few weeks and he has written several interesting posts on IPF and how you should deal with it. You should check out his article <a href="http://www.pfdoc.com/2013/10/the-internet-said-i-have-3-years-to-live.html">the internet said I have 3 years to live</a> and <a href="http://www.pfdoc.com/2013/09/five-reasons-you-should-use-oxygen-if.html">why you should use oxygen if you have PF</a> amongst several others.</p>
<p>Through his blog I found another interesting research program led by Dr. Swigris. It's called the P3F Registry and is basically an effort to collect data on patients suffering from Pulmonary Fibrosis. Researchers are hoping that data collection on a large scale will help them pinpoint effective treatment methods. You can participate from anywhere around the world (everything is online) and maybe you will help them find an effective remedy for certain issues. Check out the <a href="http://pulmonaryfibrosisresearch.org/">website for P3F</a>.</p>
<p>I hope reading Dr. Lederers' blog will help you gain valuable insight into this disease. A lot of readers' have been asking about Stem Cell treatments for Pulmonary Fibrosis. I will be writing about these in the next post. However, please be advised that right now, <a href="http://www.pulmonaryfibrosis.in/lung-transplants-in-india.html">Lung Transplant</a> is the only real treatment option that is proven to be effective for IPF patients.</p>6 months and Global PF Day2013-09-05T18:45:00+02:00Ashraytag:www.pulmonaryfibrosis.in,2013-09-05:international-pf-day.html<p>Today is 6 months since my father passed away from IPF. I definitely miss him, the world goes on and IPF research is marching forward. September 7th is also Global Pulmonary Fibrosis Awareness Day.</p>
<p>On the suggestion of one of the readers on this site, I have made a <a href="https://www.facebook.com/events/583563165034631">Facebook Event</a>. <strong><a href="https://www.facebook.com/events/583563165034631">Please invite all your friends to the Event</a></strong>. It is a simple Events Page that aims to create awareness about Pulmonary Fibrosis, I have included some links and videos there.</p>
<p>At the very least, I hope to familiarize people with the existence of this deadly disease. With more knowledge and awareness, there will be greater emphasis on research and new breakthroughs will certainly take place!</p>
<p>This is the <a href="https://www.facebook.com/events/583563165034631">facebook event</a>. Please invite all your friends and ask them to invite their friends as well.</p>
<p>Also, on this day, I have setup a recurring donation of US$100 per month to the <a href="http://www.pulmonaryfibrosis.org/donate">Pulmonary Fibrosis Foundation</a>. The foundation supports IPF research and clinical trials. It also coordinates support groups, etc. I will continue to donate as long as I can afford it. Hopefully my small contribution will help them fund more research towards finding a cure for this awful condition.</p>
<p>If you can spare some money for a worthy cause, please <a href="http://www.pulmonaryfibrosis.org/donate">donate to the Pulmonary Fibrosis Foundation</a> as well.</p>Acute Exacerbations in IPF - What can trigger it ?2013-08-25T15:00:00+02:00Ashraytag:www.pulmonaryfibrosis.in,2013-08-25:acute-exacerbations-ipf.html<p>Previously I had mentioned that my dad was going through an acute excerbation of IPF before he passed away. None of the doctors really identified it as such but I do not have any other words to describe his sudden decline in breathing capacity.</p>
<p>What exactly is an acute exacerbation ? Well, to put it simply, it is the sudden worsening of one's lung condition. This happens quite commonly with IPF patients at the end stage.</p>
<p>My dad was a pilot and he flew his last flight on 10th December 2012. He used to take O2 while sleeping at night but he could carry on with most day to day activities quite well. At this point he was taking just pirfenidone and some NAC for his cough. (the cough was the most irritating part!)</p>
<p>However, since we learnt about <a href="/lung-transplants-in-india.html">lung transplants</a> at Global Hospital in Chennai, my dad decided to go there (we live in New Delhi) for an evaluation. My parents went to Chennai on 17th December 2012 for the evaluation. They did a full workup and also an angiography to check his cardiac health. They found two blockages, one insignificant and another was about 70%. The doctors at Global Hospital advised my dad that he needed to have a bypass surgery to undergo a lung transplant. His report said "Bypass surgery followed by Lung TX after 6 weeks".</p>
<p>He did not enjoy the Angiography. It's a rather painful process where they cut an artery in your arm (or leg) and put a catheter through it all the way to your heart. They check everything and take the catheter out. Then, they seal up your artery but it takes a few days to heal and can be quite painful. Unfortunately, he was upset with the result as he now had not one but two problems (IPF and a heart issue).</p>
<p>Furthermore, with a clear heart issue my dad could not fly any more. So he called up his employer and informed them of the news.</p>
<p>We took my dad to Apollo Hospital in New Delhi on 22nd December where the doctor ordered an echo, looked at the report from Global and said that he didn't need any intervention. Unfortunately, the doctor was busy so when we asked him about the lung transplant requiring a heart procedure first, he said "They will do it if they want to do it, but in my opinion, it's not required." It's always difficult when you get such answers because while dealing with such a serious sickness you often do not have the strength to deal with ambiguity.</p>
<p>So we decided to seek a second opinion. We went to Fortis Escorts Heart Insitute where the doctor advised us that the blockage doesn't look that serious (we had a DVD of the angiography that Global Hospital had given us). However, he said that he would like to do a procedure called an FFR (it's an angiography that measures some sort of pressure difference between arteries to see if there is a significant blockage). He said that if the FFR showed that the blockage was significant, they would immediately put in a stent. The stent would go in on the same catheter so there would be no need for another procedure. We scheduled the procedure for 8th Jan 2013.</p>
<p>Through this time, my dad used to take the dog for short walks, he could drive and go to the market, and while he was always a little breathless - he could manage things reasonably well.</p>
<p>On 8th Jan 2013 my dad was admitted to Fortis Escorts for the stenting. On the morning of the 9th, they performed the FFR and put in his stent as the blockage was above the margin (just by 0.5%). My dad spent another day in the hospital and then came home. The next day, he felt like a new man so he went for a big walk with the dog. The day after that he was flat out on the bed and didn't have any energy at all!</p>
<p>This is where my dad's serious decline started. He had increased his nightly O2 from 2.5L to 4L/min. He still didn't use O2 during the day but felt increasingly breathless and could walk only short distances before needing rest. He couldn't walk the dog anymore. The stenting had apparently caused some adverse reaction because now he seemed much worse than before.</p>
<p>We went back to the doctor who had done the stenting. He ran a few tests and everything was fine. He said the stent was working properly and my dad's heart was fine. Everytime I mentioned that his condition was worse after the stenting the response was "Oh well, he has IPF so it's normal to get worse..". It's strange that doctors in India have very less experience with IPF. One of the first heart doctors we met in Apollo asked my dad "Oh, how did you get this IPF ?". I wanted to say "Do you know what Idiopathic means ?" but I refrained myself. Several doctors have asked similar questions along the way including some pulmonologists! (shocking, I know!) I tried to explain to the doctor that my dad wasn't declining at such a rate prior to the stending, but the doc was already busy thinking about the next patient who was going to pay him Rs. 1000 + tax for a 15 minute consultation.</p>
<p>So we went back home and tried to deal with the situation. We decided to go see another pulmonologist in Apollo, New Delhi. One of the heart specialists had recommended him as "the best in the country". When we asked him about whether we should get a lung transplant he seemed to not know about the procedure happening in India. Not only that, but he recommended against it. He said "Oh sir, when your DLCO falls below 35% only then we'll look into it".</p>
<p>In all of these days, no one had mentioned the words "Acute Exacerbation". It was only through my research online that I found out about this. I was so scared. Did we mess up my dad's health more by performing the stenting ?! Why didn't the doctors say that something like this could happen ?</p>
<p>Well, the short answer is "the doctors wouldn't know". This is the worst thing about IPF - we do not truly understand it's nature, progress, and speed. In my dad's case, he was going through an acute exacerbation. This became evident when in February I had to buy a portable O2 concentrator just so that he could walk around comfortably. But by the end of February not even the 2.5L of pulse flow portable oxygen was enough for him. He needed 5L of continuous O2 to walk around - we got him a long tube for his big concentrator. In December, my dad had walked into Apollo hospital to see the doctor. In February, I had to take him in on a wheelchair. Yet, the doctor looked at his X-Ray and said "There's no acute exacerbation - it looks okay". I don't think he knows how to read an X-Ray or maybe an X-Ray is not the right tool for the job. The days running up to my wedding were interlaced with visits to incompetent and impatient doctors in New Delhi. Unfortunately, it was all for nought.</p>
<p>On 5th March 2013 my dad passed away and even in the ICU in the Army Hospital R&R, the pulmonologist was not sure of whether this was an acute exacerbation or not. He was not sure if it was an infection or something else. They had run several tests since my dad was admitted there for the past 2 days. They had cleared his heart of any issue. He needed 10L of continous flow O2. His condition had worsened a lot over the night of the 4th and on the 5th even with 11L of continous flow O2 he could not maintain over 70% saturation. When I saw him in the ICU on the morning of the 5th, he was delirious due to the lack of O2. When I went up to him, he just opened his eyes momentarily before he went back to groaning and trying to breathe. The doctor in charge of the ICU asked us if we wanted to try mechanical ventilation.</p>
<p>This was the moment that I had to make the toughest decision of my life. The decision to let my father go. I had read everything online. IPF patients respond poorly to mechanical ventilation. The procedure is traumatic and the outcome is poor. After all, it's not like my father will take mechanical ventilation and suddenly be cured of his IPF. He would still struggle to breathe, even if he managed to make it out of the ICU. The doctor in the ICU also agreed that IPF patients should not be mechanically ventilated. There's no point.</p>
<p>My mother was with me and already crying. I asked the doctor what we can do to make him comfortable. She said that we can give him morphine and he will be peaceful and comfortable. I told her to do it. I asked her if we had to sign some sort of consent form but she said verbal consent from family is enough.</p>
<p>I have no doubt in my mind that my dad's sudden and sharp decline was due to an acute exacerbation of IPF. This phenomenon is well documented in IPF research and I have read a lot of things about it. Unfortunately, it appears that medical professionals in India seem to be quite unaware of it. They are bogged down treating regular varieties of pulmonary disease (TB, Pneumonia, etc.) that IPF doesn't fly too high on their radar. So what caused my dad's acute exacerbation ?</p>
<ul>
<li>Was it the chart busting pollution in New Delhi ? (my parents were living in Coimbatore until September 2012)</li>
<li>Was it the initial angiography in Global Hospital ?</li>
<li>Was it because of periods of hypoxia while my dad was not on O2 ?</li>
<li>Was it the stenting procedure ?</li>
<li>Was it something else ?</li>
</ul>
<p>Unfortunately, we will never know why these things happened the way they did. However, the ultimate truth is that my dad went from walking a few kilometers in the trade fair in November 2012 to not being able to walk on 10L of O2 in March 2013. He knew he had IPF for 6 years but his decline in the end was very sharp.</p>
<p>It's important for IPF patients to understand that acute exacerbations can happen at anytime and to take proper care. It's also important to find a competent doctor, if you know anyone, please leave his info in the comments - it will help other people IMMENSELY. I could not find a good doctor in the top hospitals of New Delhi (I only tried Fortis and Apollo).</p>Pirfenidone - Does it work ?2013-06-30T11:05:00+02:00Ashraytag:www.pulmonaryfibrosis.in,2013-06-30:pirfenidone-does-it-work.html<p>Pirfenidone is one of the only drugs that has been approved in several countries (Japan, India, Canada, etc.) as a viable treatment option for IPF. In clinical trials it showed only an 8% success at slowing down the progress of the disease. However, secondary effects that were observed was a reduction in the probability of an acute exacerbation.</p>
<p>IPF patients often suffer episodes called acute exacerbations. During these periods, they suddenly get really bad, have trouble with oxygen saturation levels and sometimes need hospitalization. <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3039013/">Pirfenidone was shown to reduce the incidence of such episodes</a>.</p>
<p>In the case of my dad, his liver readings were slightly elevated in late February due to all the drugs he was taking. So, on our visit to the doctor on Feb 22nd, the doctor took him off Pirfenidone. At this point, my dad had been taking it for about 9 months. (since May 2012)</p>
<p>Shortly after the Pirfenidone removal, he went into an acuate exacerbation and eventually passed away on 5th March. It may be that he was already having an acute exacerbation since his condition had become much worse since December 2012. Another suspect in the exacerbation is the stenting procedure he underwent. We were looking into the possibility of a lung transplant but to have that, he would need to either get stented or have bypass surgery. Since stenting was a safer option, he got a stent placed on January 7th 2013. However, after this, his ability to do any physical activity greatly reduced. He had trouble keeping his O2 levels up while walking around and eventually had to use oxygen 24x7 (prior to this, he only took oxygen at night while sleeping - he could go about his day without supplemental O2). </p>
<p>I searched high and low on the internet to see if there was any correlation between a stenting procedure and an acute exacerbation but couldn't find anything. Unfortunately, not much is known about what can cause an acute exacerbation of IPF. There are some cases where a patient underwent kidney surgery and shortly thereafter had an IPF acute exacerbation. Pretty much anything can trigger it.</p>
<p>Pirfenidone is still not available in the US as the FDA hasn't approved it yet. The drug is pretty cheap in India and I would suggest that anyone who wants it should try and get it imported. It's produced in India by a fairly reputable company called Cipla. It would be much cheaper than buying it in Canada, etc.</p>
<h2>Do not take Azathioprine</h2>
<p>Another doctor we visited prescribed a combination of Azathioprine and Prednisone. This is a very dangerous combination and my personal opinion is that the doctor was not aware of the latest studies on IPF. There was a <a href="http://pulmccm.org/2012/randomized-controlled-trials/panther-ipf-stopped-early-prednisone-azathioprine-dont-work-for-ipf-thorax/">study in 2011 on this combination</a> and it was found to be so dangerous that the study was stopped midway. If your doctor prescribes this combination - <strong>PLEASE TAKE ANOTHER OPINION</strong>. My dad took this combination for 2-3 days but when I found this study he stopped taking it and switched back to his older medication. Nothing was helping much, really.</p>
<h2>Remedies for the coughing with IPF</h2>
<p>The coughing with later stage IPF gets pretty bad. We couldn't really find many ways to control this. Prednisolone did control it for a little while but it would eventually return as the body adjusts to the dosage. Besides, steroids aren't really the best for you and your other systems. The only thing that would help the coughing is possibly humidifying the air and taking NAC (an antioxidant) but the benefits were small.</p>
<p>Some people find nebulizers helpful, you have to basically try a number of things and see what works for you.</p>
<h2>A tough choice ?</h2>
<p>Taking medication for IPF is a tough choice. The drugs don't really work. Pirfenidone is possibly the only medicine that is worth a shot and it is fairly safe. Other than that, a combination of steroids is possibly a bad idea.</p>
<p>We ended up experimenting with various steroid combinations (with the guidance of doctors of course) only to control my dad's cough. However, nothing seemed to be work and everything just seemed to make something else worse.</p>
<p>This unfortunately is the choice you are faced with. Take drugs to control the cough and make things worse ? Or take nothing and be bothered by this annoying cough ?</p>
<p>Every case is different, but please be careful with drugs. Again, there are no medicines that truly work for IPF so far and doctors are only too happy to prescribe 20 pills a day since drug companies take them on <a href="http://abcnews.go.com/Primetime/story?id=132141&page=1#.Uc_DOOsmy8w">cruises if they meet prescription targets</a>.</p>
<p>This does happen in India as well, so please be very careful when dealing with doctors. Make sure you go over every drug in the prescription and ask "What is this one for ?". It's best to be careful. We had situations when the doctor would say: "This one is to speed your heart up" followed by "This one is to slow your heart down". What ?!</p>
<p>Another example was that they prescribed blood pressure medication for my dad when he had no blood pressure problem. Please be careful when it comes to doctors and drugs. Good luck!</p>Lung Transplants in India2013-06-24T09:00:00+02:00Ashraytag:www.pulmonaryfibrosis.in,2013-06-24:lung-transplants-in-india.html<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>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. </p>
<p>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 <a href="http://www.hopkinsmedicine.org/news/media/releases/DoubleLung_Transplants_Work_Better_Than_Single_for_LongTerm_Survival">double lung transplants result in greater 10 year survival</a>. </p>
<p>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.</p>
<p>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.</p>
<p>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.</p>
<p>Below is all the info that I have been able to find about lung transplants in India. I had started a <a href="http://www.inspire.com/groups/pulmonary-fibrosis-foundation-caregivers/discussion/lung-transplants-in-india/">discussion at inspire.com</a> 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.</p>
<h2>Lung transplant options in India</h2>
<ul>
<li>Global Hospital, Chennai. Contact: Mr Netaji (+91-9003098851) Surgeon: Dr. Govini Balasubramani</li>
<li>Yashoda Hospital, Secunderabad. Contact: +91-40-27713333 Surgeon: Dr. AGK Gokhale</li>
<li>Apollo Hospital, Chennai. Contact: +91-44-26537777 Surgeon: Dr. Madhu Sankar</li>
</ul>
<p>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.</p>
<h2>A word of caution</h2>
<p>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.</p>
<p>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!</p>
<p>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 <em>"Did you make the payment ?" - there was no "Hello sir, how are you ?".</em></p>
<p>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.</p>
<p>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:</p>
<blockquote>
<p>Me: "So is lung transplant an option ?"</p>
<p>Him: "You will have to go abroad for that"</p>
<p>Me: "I heard there are some options in the south now, can you please guide us ?"</p>
<p>Him: "Really? Well, then you should try and find out about them.."</p>
<p>Me: "Uhh.. okay"</p>
</blockquote>
<p>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.</p>
<p>I am not trying to scare you, but be prepared for a LOT of indifference. </p>
<p>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. <strong>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</strong>. His reason was: <em>"Wheelchairs cannot go beyond the entrance."</em> (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 <em>"See there, that's my dad struggling to walk here, can I please take a wheelchair ?"</em> His response was: <em>"You should have dropped him at the entrance, whose fault is this ?"</em> 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.</p>
<h2>Lung transplant stories from India</h2>
<ol>
<li><a href="http://articles.timesofindia.indiatimes.com/2012-07-31/mumbai/32960286_1_lung-transplants-transplant-team-surgery">Woman in Mumbai had lung transplant</a> but <a href="http://www.deccanchronicle.com/130303/commentary-sunday-chronicle/article/%E2%80%98-nurses-were-god%E2%80%99s-angels%E2%80%99-parag-mehta">died 5 months later</a>.</li>
<li><a href="http://www.globalhospitalsindia.com/chennai/media/second_lung_tx_global.aspx">Global Hospital press release</a> regarding their lung transplant program.</li>
<li><a href="http://www.dmrhs.org/tnos/notifications/list-of-approved-hospitals-for-lung-transplantation">Tamil Nadu's list of approved hospitals for lung transplant</a></li>
<li><a href="http://articles.timesofindia.indiatimes.com/2012-04-07/chennai/31304304_1_lung-transplant-new-lung-new-organ">Global Hospital gives new lung to Bahrain woman</a></li>
<li><a href="http://www.dnaindia.com/india/1743648/report-pune-woman-becomes-third-in-country-to-get-lung-transplant">Pune woman has lung transplant in Secunderabad</a></li>
</ol>
<p>Any more stories ? Please share them in the comments!</p>Introduction to PF India2013-06-23T19:00:00+02:00Ashraytag:www.pulmonaryfibrosis.in,2013-06-23:pumonary-fibrosis-in-introduction.html<p>Welcome to pulmonaryfibrosis.in. If you are here then it may be because you or someone you care about has been diagnosed with some form of Pulmonary Fibrosis. First of all, I am truly sorry that you are here but hopefully this site will be a source of strength for you.</p>
<p>The reason this website exists is because my father passed away due to IPF (Idiopathic Pulmonary Fibrosis) on 5th March 2013. His journey with IPF was long and hard but most of all it was lonely, he had his family close to him, but unfortunately most other people do not understand the nature of this disease. There is very little awareness about IPF in India, even doctors sometimes ask strange questions!</p>
<p>The first time I heard about this disease was back in 2006 when my dad called me to the dining table, sat me down, and said "I have been diagnosed with this disease, it's called IPF". My father was a pilot in the Indian Air Force, due to this he had routine medical checkups. It was in one such checkup that his disease was detected.He had noticed some shortness of breath while climbing the stairs but nothing more than that.</p>
<p>When I heard of this, the first thing I did was google it. I was dumbfounded. There's no cure ? Average survival of 2-5 years ? The only option was a lung transplant which was not available in India at the time. I was 20 years old and unprepared to face such a reality, but reality was there and it was unavoidable.</p>
<p>Luckily my father lived well for the next five years with serious symptoms only showing up in the sixth year (end of 2012 - early 2013). In all of this time, none of our friends had ever heard of this disease or knew what it was about. There is so little awareness about IPF in India, yet, visits to the doctors office always proved that a large number of people suffer from this condition.</p>
<p>I'm hoping that through this website, we in India can find ways to battle this disease. IPF is a horrible disease and those who are affected must stand together. Together we can find ways to ease the burden, manage the symptoms, and support each other. I hope to start a forum here where we can share information about the latest medication, progress with lung transplants, ways to manage decreased lung function, and more.</p>
<p>This site is not just about IPF but all kinds of pulmonary fibrosis. Often, the methods of management are similar (oxygen machines, antioxidants, yoga, etc.) and therefore applicable to both groups of people with PF.</p>
<p>I shall begin by writing about our journey with IPF and how we managed as best as we could. At times I will share information about the various options we explored, the doctors we met, the medicines we tried, and more. Through this, I hope to give strength to people struggling with this condition and their loved ones. I hope that we will be able to build a community over here so that we can support each other in our unique and tragic circumstance. You are not alone, and together we shall be stronger.</p>