It's time to chronicle the upcoming events...

There's a lot going on right now.  Five years ago, out of the blue, I was diagnosed with Pulmonary Hypertension, a rare, progressive and incurable lung disease.  3 1/2 years ago, I left my career in government, went on disability and added the most intense drug therapy to help combat it, an IV-administered medicine called Remodulin (and if you go to that link, you can even see a picture or two of me!).  I've spent these past few years focusing on my health and my family.  Unfortunately, the "progressive" part of PH has kept up and this past June, I was told it was time to start the evaluation process for a double-lung transplant.

I want to make sure I keep my loved ones informed about this process so I thought this blog might give me a place to chronicle everything from quick updates to delving into the more complex issues this brings up.

Things move into high gear this week, though I've already met with the head of UW's lung transplantation team, had my first round of blood draw (18 vials of blood!) and I had my right heart catheterization.  My immediate appointments are as follows (all are at or near the University of Washington):
Wednesday -- Bone Density test, blood draw, Hep B injection, start 24-hour urine collection, meet with social worker.
Thursday -- begin 24 pH study, Lung Transplant Education Class
Friday -- Esophagram test, Pulmonary function tests.

Then Monday, October 17 will be my last day of appointments and will include meeting with Dr. Edelman, head of transplantation; meeting with the nutritionist and then Dr. Mulligan, the transplant surgeon.

Thankfully, my mom is flying up on Tuesday to help with things and also join me and Scot at the appointments that my caregivers need to be at (social worker and the class).

Time to post this and see if it works! 

--- Kim