**Note October 2023**

We will add more details someday, but we are sad to share that Keith passed away after a fierce battle trying to survive the complications of a double lung transplant which was the final attempt to extend his life after his determined battle with IPF. He was 63 and far too damned young to go.

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Ten years of IPF/UPI and counting!!

[This earlier section was written in September 2012]

About eleven years ago Keith was clearing his throat and coughing A LOT. It didn’t seem to be making him crazy, but it was definitely not only making me worry, but getting on my nerves. Seriously!! How many times in a day can one man clear his throat? I was sure he’d set records. So—before we headed off on an adventure to the U.K. he had some inconclusive tests that only really told us that he needed more tests. We all agreed he was in good enough health to take the trip before coming back and dealing with the next phase.

Upon our return, we were referred to a pulmonologist (AKA lung specialist) who decided the best way to get to the bottom of the situation was to perform a lung biopsy. We figured, “Sure! Why not?? Let’s figure this out and get it treated.”

Keith made it through the surgical procedure at the nearby hospital with flying colors. Apparently there’s normally more pain and discomfort than he experienced, but he was doing fine and now had a cool new scar to show off. He hadn’t really earned that many through his life to that point and it was his first surgery. He hadn’t even had a tonsillectomy!! I could not begin to relate to his stellar health history, but we were banking on it helping him through whatever this was.

Ultimately, the biopsy was sent back east for diagnosis and it came back as UIP – usual interstitial pneumonia. Which once we started learning more, we came to understand was anything but “usual” and deserving much concern. It is a progressive IPF (idiopathic pulmonary fibrosis) lung condition that has some pretty scary statistics associated with it. We’d discovered that Keith had a disease that was progressive, that many people die from in the first 2 to 3 years after diagnosis, had no agreed upon standard treatment plan, and was about to become a part of how we managed every day of our lives since.

The first thing we did was ask the existing pulmonologist Keith was seeing who he would see if he were diagnosed with this condition. He said there were two people he could think of in the states (just two!!) —one was in Colorado, but lucky for us his top choice was a physician working at the University of Washington Medical Center in Seattle by the name of Dr. Ganesh Raghu. We were very fortunate that Dr. Raghu accepted Keith as a new patient and has been our partner in this endeavor ever since. His staff is great, too.

Dr. Raghu’s first step was to validate the diagnosis. We were hoping that there’d been some sort of mistake and that Keith had something not as severe and with a known treatment plan. Unfortunately, the diagnosis was accurate the first time and it was time to put Keith on a plan to keep him as healthy as possible for as long as possible. It was clear that the path he was on was going to eventually lead to him being put on oxygen and hopefully a successful lung transplant. That just seemed like such a big concept to fathom. It was tough for us to wrap our heads around it because most of the time Keith seemed his perfectly healthy self. In fact, one of our friends actually said to me once, “He doesn’t seem sick!” I wanted to smack him for that. He had no idea all that Keith goes through. [Imagine rolling eyes emoticon here]

Some of our questions were (this is such a short list compared to the full one):

• How did he catch this disease? Answer: They don’t know
• Is it contagious? Nope!
• What is the standard treatment plan? There isn’t really a “standard” plan, but Dr. Raghu had a regimen that he was using and after walking us through the pros and cons—we did what was necessary and started Keith on medications that included a nasty injectable medication that gave him horrible side effects every other day for years. Fortunately (or not), it was ultimately discovered that medication wasn’t effective and it was taken out of Keith’s regimen. Life got better for him after that.
• What do we do to help him get better? There is no getting better. It is a progressive condition that is normally fairly aggressive. We’re so thankful that for Keith it’s been a slow, maintained progression that we’re hoping to sustain until he’s old and decrepit. We’re so lucky he’s been an exception to the rule so far. But we know not to take this good fortunate for granted.

I know Dr. Raghu would like us to speak to how we emotionally manage this situation and here’s what we do—we live our lives! We make sure Keith has regular visits with his physicians, he follows his medication plan closely, he avoids (as best as he can) people who have contagious conditions, and he gives the condition a respectful nod each day before we both focus on the other priorities instead. We do not let the condition manage our lifestyle, but instead we include it in our daily routines as needed, but we don’t focus all of our attention on it—that would be bad! We often will go a day or two without even thinking about Keith having this disease while we just LIVE. Other than his medication—which is old hat and routine by now—there are a few telltale signs: he has a few doozy coughing and throat clearing fits a day; he is WAY susceptible to phlegm attacks due to dairy products (but he hasn’t given them up anyway); he gets winded going uphill and stairs nowadays; and sometimes when he bends over for something it really takes his wind away.

Now you ask how a guy with this condition can take this pilgrimage. Well, Keith has always liked walking, hiking, and traveling. He’s always wanted to tackle a long-distance trek. He’s not hyper-athletic, but he has continued to hike a local area arboretum and the trails that are in the city and don’t even get me started on the crazy jaunts he and Ross (best friend to those of you who don’t know him) take on their infamous weekends! He might be slower, but he is relentless. I’m so proud of him for living spiritedly and not letting the disease become his identity.