Clinic Update Plus

Stacy and I made it through our appointment with the University of WA Pre-Lung Transplant Team in Seattle with effort. This was their first time seeing me in such distress as in the past I was able to reach deep and put my best face forward. Everything completed confirmed my decline. We measured new lows for the 6 minute walk. Lung function tests crept lower so my FEV1 is now 15% from previous 17%. Best thing about leaving Battle Ground at 4:30am was seeing the awesome panoramic views of Mt. Ranier and Mt. St. Helen along with foggy waterways and fields during sunrise. Spectacular!

I received feedback from the clinic visit yesterday. My listing number (LAS) has moved up a bit. The LAS is not an actual tool I can use to guess when I'll get a transplant as it changes quickly and often due to multiple criteria. The UW team made changes to perscriptions. Yippee! I'll be down to 2 pills daily temporarily. We want to see if this will relieve some of my neuropathy and edema. We have an adjusted plan moving forward including doing a CAT scan locally before my next 3 month UW clinic visit. That will let their team discuss results in advance.

In other news I have been approved for in-house caregiver assistance which will be awesome in so many ways. Multiple agencies pushed fast and furious to get this going and keep it on track. The goal is a first visit on Aug. 5th.

My oxygen provider service also stepped it up this past week by visiting Friday. They gave me a new ventilator mask. For anyone interested, it's a high tech Philips brand Amara View mask. It's already making it easier stay on the ventilator. Settings were also adjusted on the machine so it's working better for me. I'm hopeful I can learn to sleep overnight with the new mask on so I don't have to step up to less user friendly ventilators.

That's it for now. Gotta go.