Everything remaining somewhat equal with my health- I was focused on my career. My husband Scott and I had discussed making a move to a new city since adventure and travel were important to us. Being that we were both born and raised on the West Coast we felt Seattle would be a natural fit for us. So, after securing a new job in Seattle, we made the move north in February of 2016.

What a city! We loved it. Surrounded by water, great restaurants, endless outdoor activities, distinct seasons. We were exploring like crazy and really taking in the new area. What a great decision to move. On the flip side, my health was starting to slide backward. I could feel changes in my breathing and I knew I needed to find a local doctor. I was lucky enough to be near University of Washington and I was even luckier to have found Dr. Lawrence Ho. All I knew about him was that he was working alongside Dr. Ganesh Raghu and that they had done a lot of research and work in the Interstitial Lung Disease (ILD) field. I was so fortunate to find Dr. Ho. He was amazing and Scott and I both felt he was invested in my health in a way that other doctors hadn’t been.

We went back through my health history with Dr. Ho and we decided to re-try some medications and explore additional autoimmune blood workups to rule out any autoimmune diseases that might have been at play. We also explored acid reflux as a contributing factor to my lung disease. Although we explored options that we hadn’t previously considered, ultimately, we landed in the same place with my diagnosis. So, we still didn’t know why I had this disease or where I got it. And my Pulmonary Function Tests (PFT) were continually decreasing. We were checking them every 3 months and the numbers were dropping a few percentage points every time.

Scott and I had planned to take my Mom to Europe in May of 2017 and Dr. Ho knew about the trip and blessed it but he asked us to come back for a follow-up immediately upon our return. I knew he was feeling unsure about the stability of my health. So, we went on the trip to London, Amsterdam, and Paris and you better believe we made the most of every moment. I had to live it up…I had an ominous feeling about what was going to happen when we returned.

When we got back we spoke with Dr. Ho and he started introducing the idea of transplant preparation into the conversation. He indicated he thought the main drawback for me was going to be my weight. I’ve never been a naturally slim person, but with the steroids and other medications my weight was the highest it had ever been. We discussed weening off the steroids to aid in weight loss but decided against it since my Pulmonary Function Test (PFT) numbers were not stable. I wasn’t ready to except the idea of transplant as the next step anyway, but I listened.

I was still in denial, still working normally and pretending I was 100% for the rest of the world, including my family. I took a work trip in August of 2017 from Seattle to San Francisco to give a training in our SF office. The trip was a challenge and I was completely reliant on a portable oxygen concentrator (POC) for the flight down to the Bay Area. It was on 5 liters per minute and it was a portable so it was pulse (not continuous flow). I could not even consider getting up during the flight to use the restroom, I felt so weak in the air, but I made it to the office and delivered the training. The flight home was another story. I wasn’t sure if I should fly at all because the flight down had been rough. My husband kept telling me to get off the plane and stay in SF, but I’m a bit stubborn and strong willed and I didn’t listen, I just wanted to get home. I was in the air and checking my oxygen saturations with my pulse oximeter religiously. My saturation dropped to 55 about half way through the flight (it should be above 90). I could barely breath and the oxygen pulse of 6 liters wasn’t enough with the altitude. I quickly paid to get WiFi so I could text my husband, I needed him to know what was going on. I was alone and so scared I was going to die on the plane. We texted and I focused on my breaths and tried to relax. I made it through to Seattle, but it was obvious that my flying days were over. This was a HUGE hit for me, as someone who lives to travel.

Once back in Seattle, I finally faced that fact that I had been feeling fatigued and breathless more than ever. I went in for a doctor appointment and my doctor reviewed my Pulmonary Function Tests and there was another dramatic drop. My oxygen needs doubled. I was now prescribed 8-10 liters at rest. I knew transplant was unavoidable and for the first time in the appointment I consented to discuss it and make strides toward pursuing it. Dr. Ho, knowing that Scott and I had no family in the Pacific Northwest, suggested it may be beneficial to consider a move back to California. He recognized that the transplant process is a heavy journey to pursue and caregivers are an essential part of recovery. After a few weeks of discussion, we agreed, and Dr. Ho referred us back to Stanford ILD Clinic.

I finally had to take a leave of absence at work in late September of 2017, something that I had been avoiding. As someone with no children, my work was a large part of my identity and I always put everything I had into my job. It was a sad realization for me that I was starting to lose some of the things I lived for. But, I couldn’t have asked for a more supportive team at work, they were all behind me and knew that I needed to focus my efforts on my health.

Within a matter of months, we packed up our apartment and moved everything back to California. We had to drive since I could no longer fly and I used a POC in the car and tried to move very little. I switched to E-tanks with a higher liter flow for bathroom stops and any time we got out to eat or stretch our legs. The oxygen situation on the way down wasn’t ideal but we made it work. By December 2017 we were settled back in in the Bay Area. It was a whirlwind and I was exhausted and feeling the worst I had ever felt, physically AND mentally.