This blog won’t be so grand, ’cause I’m typing it hurriedly on my phone before embarking on another day of great adventure! Please excuse the rambling, disorganized nature of this post. But I figured the blog needing updating in light of all that has happened since my last post.
Got to San Francisco safely after riding in a dope jet that’s “like a G6.” I got to fly in this private jet because I needed huge amounts of oxygen to make sure my lungs wouldn’t implode or something at the high altitudes.
There are two big “aspects” of my trip I’ll update ya’ on, so you can just skip to whatever you’re interested in: the hospital-side of things and the vacation-side of things.
So far, so good. Had three long days of appointments in which we met with transplant docs, CF docs, and an infectious disease doc. Long story short, they THINK I am eligible for the transplant list. But it’s not certain yet. We still have (painful) tests to undergo. There are some barriers I will have to overcome in terms of current infections I’m battling, but fingers are crossed and hearts are optimistic.
If I am put on the list, it could take an average of 3-6 months to get the transplant. If I get accepted on the list, I’ll write a more detailed post explaining the process.
Health-wise, I feel so amazing. The humidity in Hawaii really bogged me down, plus I’m trying out some new treatments. Two big changes: appetite and energy. I haven’t had a good appetite without the help of steroid meds for months, but I’m finally eating some now! Not sure if it’s because I’m surrounded by so much great food, or if it’s because of generally better health.
My energy boost has been astounding. In Hawaii, I only went outside the house for 4-5 hours, and spent most of that time sitting down in the theaters or at coffee shops. According to my FitBit, I was only averaging 600 steps a day. Even just talking to people made me tired, and I would need gasps of oxygen between bites of what little food I ate. Now, I’m energetic, on less oxygen, and out of the hotel nearly all day. Just yesterday, I hit 6,200 steps! So I guess you could say I’m doing 10x better now? Let’s hope this health climb continues.
Kristina is here with me for the first week (she leaves tomorrow :c ), so we are trying to play tourist. It also helps to keep my mind off the scary transplant stuff. We visited the Walt Disney Museum, the Aquarium of the Bay, explored Haight-Ashbury a little bit, roamed Fisherman’s Wharf and Golden Gate Park, and today we will be seeing what Mission District has to offer.
Of course, we also ate a lot of yummy food, from Chick-Fil-A to loads of chowder to Cuban food. I’m gonna miss the local food scene in Hawaii, but the Bay doesn’t seem half-bad when it comes to the taste buds.
Actually, the Bay isn’t half-bad at all. I think I will love living around here. I noticed there’s loads of disabilities accessibility, nerds to blend in with, diverse culture, and beautiful, comfortable climate (I love fog). We will probably be living in a city an hour or so outside of San Francisco (Gilroy or Sunnyvale), but it’s still cool to have nearby.
I miss everyone! But don’t worry about me. I’m doing better than fine.
P.S. I’ll getcha a better blog post ASAP!
My cousin from Fl. And I will be in San Fran 10/11-10/13. We are just on a girls road trip up the coast from LA. We are staying at Zephyr hotel by the Fisherman’s Wharf. Maybe we can touch base with you guys and meet for a meal! We love that Crab idea! Hang in there! !Aunt Kay