2 posts tagged “pneumonia”

Still leading a full life – An interview with IPF member David

Posted November 27th, 2015 by

David’s (darbygreenboy) username comes from the village in the English countryside where he lives and is still an active member of the community. We caught up with this grandfather of 10 – a former business owner, mayor and leader of the town council to talk about living with IPF. Here’s what we learned …

David surrounded by his family one Father’s Day.

Tell us a little bit about yourself. What are some of your hobbies and passions?

I am 70 years young and live in England in a village called Darby Green in the Parish of Yateley. It is in the countryside, but only 30 miles from London. I live there with my wife of 48 years, Rose, whom I met 51 years ago at Youth Club and we have been together ever since. We have 3 children: Abbie, Emma and Stephen, and 10 grandchildren aged from 3 months to 13 years old and they all live nearby.

I had my own business for 30 years, but I am now retired. I am a Yateley town councillor and have been for the last 12 years. I was also mayor of my town some 8-9 years ago and leader of the council for 7 years.

I love travelling and before being diagnosed with IPF, we traveled many times to the USA, including touring the Deep South, California, Alaska, New York and many other wonderful places. Now, unfortunately, we can no longer obtain reasonable priced medical insurance to travel to the U.S.

I love to watch football (soccer) and was a keen tennis player until the IPF.

You say in your PatientsLikeMe profile that you were diagnosed with IPF after getting out of breath climbing stairs. What were your thoughts and feelings when you received this diagnosis?

My first thoughts after being diagnosed with IPF was one of stunned realization of my own mortality. I had read on the Internet that the median life expectation was 2-3 years, that was 3 years ago. The first year after being diagnosed I caught a cold that went to my chest. This developed into a type of pneumonia and I was very ill and it took me nearly 3 months to feel near normal again.

What are some changes that happened in your life after being diagnosed? What in your life helps you to better manage your condition?

This made me realize I had to make changes and try to avoid infections. I no longer went to watch winter soccer matches.When the grandchildren have colds they do not visit. If I am at a council meeting and a councillor has a cold they tell me and we avoid contact.

I know it sound severe but it has kept me free from colds for 18 months now. I carry in my travel case a 2-week supply of antibiotics as well as prednisone prescribed by my doctor in case I get a chest infection whilst on holiday.

All that said, I lead a fairly full life. I help with picking up the grandchildren from school and they visit every week. I am okay at walking reasonable distances on the flat, but can no longer run about with the children or play tennis.

Can you describe your experience on PatientsLikeMe? What keeps you coming back to the site?

I find PatientsLikeMe essential and in many ways reassuring. If I am feeling down after getting bad side effects from either drugs or IPF itself, I will go on line to see what others have experienced. And this I find, in a strange way, comforting to know I am not alone. 🙂

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Keith & Sarah’s personal journey with rare lung disease. Part I, “Fine”

Posted April 18th, 2013 by

As part of our “Spotlighted Blogger” series, we’re talking with people who are sharing their personal health experiences to help raise awareness of disease and change healthcare for good. For our latest interview, we’re talking with Sarah and Keith. Sarah started writing about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath. In this first part of our three-part series, Keith and Sarah talk about why they started blogging, and the difficulties of finding the right diagnosis.

Keith:Sarah1

What prompted you to start blogging about Keith’s journey and what’s the reaction been? 

[Sarah] When Keith’s health took a turn for the worse in the winter of 2011, I asked him repeatedly if he would allow me to share his story, knowing that we were likely going down a very difficult road, and selfishly wanting lots of support while we (I) went down that road. He wasn’t comfortable sharing until the day we drove away from his respirologist’s office, after an appointment where the doctor said that Keith was “fine,” wasn’t a candidate for transplant, and didn’t need to be on oxygen. We knew different. I blogged, we got a second opinion, and Keith was on oxygen within 4 days, and referred to the transplant program at Toronto General Hospital (TGH) within 2 weeks.

At what point did you know that something was not right? What was your first symptom?
[Keith] I got a cold that wouldn’t go away, and it turned into a pneumonia. I was hospitalized in the fall/winter of 1997. I never fully recovered.

What was involved in finding a diagnosis? Did Keith ever receive an official diagnosis?
[Sarah] Keith visited various specialists and respirologists and was misdiagnosed with various diseases (BOOP {bronchiolitis obliterans organizing pneumonia}, COPD, asthma) before the final diagnosis of diffuse panbronchiolitis (DPB) was given. It was a strange diagnosis since the disease strikes people of Asian descent, and Keith is Caucasian. DNA testing was done to see if there was Asian blood in his makeup, but there was not. Interestingly enough, in the final pathology of Keith’s old lungs after removal – this diagnosis was confirmed.

What advice do you both have for patients that are struggling to find a diagnosis? 
[Sarah & Keith] Ask as many people as you can who have experience with lung disease, or know someone who has it. Find out doctors’ names, get referrals and stick to your guns. If you don’t feel right, tell someone!