14 posts from March, 2013

“Stiff Lungs” -Ian’s Personal Journey from Idiopathic Pulmonary Fibrosis Diagnosis to Lung Transplant

Posted March 4th, 2013 by

“Short of Breath? See your Doctor,” said the poster in the pharmacy. I’d been short of breath for some time, but put it down to an unhealthy lifestyle, being 58 and being overweight. The poster encouraged me to visit my doctor, which I did. He sent me for a chest X-ray and I could tell by the reaction of the technician that he’d seen something. He discussed the X-ray with a doctor who then arranged for me to see my own doctor that afternoon.

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My doctor explained the X–ray had shown I had ‘stiff’ lungs and that I should see a specialist a few days later. At this point I wasn’t too concerned. I was still convinced I would be told to just exercise more and take some pills. After seeing the specialist and having more tests, he told me that I had Idiopathic Pulmonary Fibrosis (IPF) and explained what it was. He also told me that left untreated I could expect to live about another 18 months! You can imagine going home and telling this to my wife and kids.

I’d never heard of it before so the first stop was the Internet. Most of the sites you visit frighten you to death. You find out the mechanics of it, the prognosis, but not how people live and deal with it. PatientsLikeMe gives you direct access to other people in your situation. It’s nice to hear from people who have had it for many years, what drugs they take, how those affect them, what they are doing themselves to keep a good quality of life and so on. Everybody is different of course, the illness progresses differently in each person, so it’s interesting to see all the variations in medication.

I have to say, I never believed at any point that I was going to die. I was bloody determined to have a transplant. I wasn’t going to die. I had to meet certain criteria to get on a lung transplant list and one thing was weight. I weighed 118kg (260lbs) when I was diagnosed and had to be 90kg (198lbs) to get on the list. So I started walking. I could only make it half a mile to start, but eventually got up to 5 miles with the help of an oxygen tank. It took nine months, but I dropped the weight. Then, everything happened very fast.

I was accepted onto the transplant list on a Friday, got a 12am phone call on Sunday about a possible transplant and was wheeled in for surgery that same day. They could only harvest one lung, but it was better than nothing. When they were taking me back for surgery I remember saying “bye” to my wife. I could tell she was hoping for something more than that. I probably should have added the ‘see you later.’

There were a few complications with my ribs post surgery and sometimes when I walk upstairs it feels like I only have one lung, but I’m glad to be alive, really. I was and am lucky to have a wife who has worked as hard as me, if not harder, to help make all this possible. Having support around you does make a difference. Sometimes you don’t realize it, sometimes you take it for granted, sometimes it’s frustrating having to have help doing things you used to easily do. And it’s great when you can give things back, like a nice roast dinner or some favorite biscuits that are within your capabilities. I do consider myself to be very lucky.

Ian is a member of the growing IPF community on PatientsLikeMe where people track, connect, and learn how to manage the condition together. Every experience shared by patients about this rare lung condition is also contributed to a data set on PatientsLikeMe that helps researchers uncover new insights about the disease. Do you have IPF or know someone who does? Sign up for PatientsLikeMe and start living better, together.


Living with Idiopathic Pulmonary Fibrosis

Posted March 1st, 2013 by

What is idiopathic pulmonary fibrosis (IPF)? How many people does it affect? Do we know what the cause is? Can it be treated? If you don’t know the answers, you’re not alone. IPF is considered a rare disease by the National Institutes of Health and much of the research surrounding it is not definitive.

© Kempski | Stock Free Images &Dreamstime Stock Photos

So what do we know? IPF is a degenerative condition with no known cause that gradually scars a person’s lung tissue. As more and more tissue scars, the lungs slowly lose their ability to transfer oxygen to vital organs. This can lead to shortness of breath and dry coughing. As the condition progresses, everyday activities become exhausting – just climbing a flight of stairs can be a challenge. It usually affects people between the ages of 50 and 70 years old. More than 100,000 people in the US are diagnosed every year and nearly 40,000 will pass away. The only known cure is a lung transplant.

If you’re living with IPF, find others just like you in our growing community of more than 900 IPF patients. Learn what they’re doing to manage their condition with symptom and treatment reports, and share your own experience with a personal health profile and in the IPF forum. If you haven’t read about our collaboration with Boehringer Ingelheim to create this customized IPF experience on PatientsLikeMe, check it out here.

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