June 15, 2017

Since my first Solo Clinic day went so well and I’ve been having a good few weeks, I decided to go to my infectious disease appointment on my own today as well.  After waking up early and getting a quick shower I headed to the city. Upon arrival I waited for the valet to bring me a tank of oxygen from the front desk, and yet again… no wheelie cart… so I wheeled my tank and purse around in a huge oversized wheelchair.  My transplant team wanted me to see the infections disease doctor to plan out which drugs will be used for...

June 12, 2017

It has now been about three months since I’ve been on oxygen 24/7 and my lungs don't seem to be bouncing back into “lets move some oxygen around” mode. I have heard through some other forums and online friends that occasionally patients with CF can go on oxygen after a bad exacerbation and recover and lower their need for oxygen. I have halfheartedly believed that MAYBE that could be MY case. So I started conducting a few experiments.  Once off IVs and as back to normal as I can possibly get… I started unleashing myself. (...

June 8, 2017

So today was my first clinic day since I was officially listed and I decided to go solo today. My parents would have happily taken time off to bring me (as they have for all my previous appointments) and the transplant doctors also encourages patients to bring support with them, but as I have been feeling pretty good the last couple days I wanted to prove to myself more than anyone that I can still have some independence to take care of myself. So I made the drive to clinic day myself and actually made it without hitting m...

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