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

Posted May 22nd, 2013 by

In this second interview of our three-part series, Keith and Sarah talk about how their daily lives changed and the importance of connecting with others. If you missed our first interview with Keith and Sarah, you can find it here.

S-K 2

What were the most noticeable changes you had to make in your daily life?
[Keith] My ability to enjoy time with family was impaired because I could no longer be active with my children or my wife. I could not work because when I tried to do the simplest task, I became out of breath. I could no longer carry a toolbox, go up a set of stairs, or do everyday tasks at home without becoming winded and requiring rest. I wanted to rest all the time and was never comfortable.

As a caregiver, what things could you do to help Keith the most?
[Sarah] Keith eventually got to the point where he needed me for many personal tasks as well as taking care of all of the home tasks. I showered him, and took over our business, and we hired a cleaning service every two weeks to try to keep the house in order. Keith really needed to know that I was there for him. I made lots of special food for him because he needed to gain weight in order to be active on the transplant list.

How did you connect with other transplant patients and why did that help?
[Sarah & Keith] From the beginning, we began to seek out others who had received lung transplants. We found one in our town and eventually met many others through our many visits to the hospital. The lung transplant “family” is a tight one and it really helped to have others to talk to who were waiting, as well as those who had received their transplants and could offer hope and advice. Facebook became a good way to find people through other friends from the hospital, and eventually we developed a close group of “lungies” that we keep in touch with.

Besides PatientsLikeMe, what would you suggest to others patients who are trying to connect with someone like them?[Sarah & Keith] Finding groups on Facebook that relate to organ donation / transplant and beginning conversations with others is a great way to find people. Starting your own Facebook group or blog to raise awareness about your situation is another excellent way to let people find you.

Sarah and Keith are part of our “Spotlighted Blogger” series, where we talk with people who are sharing their personal health experiences to help raise awareness and change healthcare for good. Sarah started blogging about her fiancé Keith’s journey with a rare lung disease back in July of 2012 on her blog Taking a Deep Breath.

 


2 Comments

  1. I’ve read a lot about Keith but still do not know what his “rare lung disease” is. Why?

  2. Hi Kitty,
    So glad you’re following along. Sarah talked about Keith’s diagnosis in their first interview last month, I copied the question and answer below. Is there anything else you’re looking for? If you’re part of the PatientsLikeMe community already, or if you have a question about getting started, feel free to reach out anytime. -Brian from PatientsLikeMe

    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.

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