I am on day six in Stanford hospital. The level of care is still extremely good. Kind of surprised at some of the services offered here. Patients are offered massage therapy. CFers get two sessions a week for free. Haven't had a chance to take advantage of it with everything else going one, but it sounds cool.
I don't think the doctors are used to argumentive patients. I'm not saying that I am purposely arguing. I just want to be sure that we are all clear on what I think about treatment, and what I am willing to do. One doctor actually told me that this wasn't a negotiation. I know they are doing their best. And I haven't told them about my science background (wanted to see how I was treated if, they assumed I didn't understand beyond basic biology). So they probably don't completely understand why I want a better explanation before agreeing to any treatment.
One doctor did answer as to why I feel pain in my port area even though it's been close to three years since the surgery. Nerves get damaged during the surgery (they have to make a pocket for the port) and they never completely repair. So every once in a while there will be extreme pain in the surgical site. Sort of like the nerves having a flashback of the surgery. It all feels very real, and the pain is real, it's just that nothing is currently cutting into the area.
Somehow broke my bed yesterday. First the foot got stuck in the upward position and it took awhile to get it to go back down. Now the head won't come up. I had to laugh. Most people "break the bed" doing extra curricular activities. I break one doing CPT.
My sister took a few days off and came over to Stanford to stay with my mom. It was nice having her. Someone to tease always helps the healing process. Her being here also helped my mom out. She didn't have to go back to the hotel alone, and my sister is good at providing a sympathetic ear when needed.
Unfortunately, my sister had to go back home today. She had a boyfriend, dog, and job to worry about. The joys of being an adult.
They brought in a bike for me to continue my workouts. I was so excited. I just hate the fact that no matter how far I build myself up, the moment I get sick I have to start the workout process all over again. This time though, I am starting the process while still in the hospital. Maybe that will help the rehab time.
Have had to deal with some issues.
My blood sugars keep going up, so I'm supposed to speak with an endocrinologist sometime today to find out the best course of action for me. I was diagnosed with CFRD (Cystic Fibrosis Related Diabetes) a few years back, but my diet and lifestyle were enough to keep it at bay (no need for insulin at the time). Now it's looking like I might have to start taking insulin. So far my sugars only spike up on prednisone days. Non prednisone days show my sugars to be low. So I'm guessing that if I do have to start taking insulin it will just be on prednisone days. I'll just have to wait and see what the endocrinologist says.
The whole concern about all this is that if I go through with getting a transplant, some of the anti-rejection medications will put me at higher risk for diabetes. This doesn't take me out of the consideration process, it just means that there's something else that needs close monitoring to ensure optimal health.
Personally, I'm still praying for a miracle that will give me another ten years with these lungs.