Almost there!

We're still working on pain management. Things were a bit better this morning, but I still didn't get much sleep. We think that my muscles may be stiffening up while I sleep, pulling on everything and causing me pain, then taking a while to settle down after I wake up. Tonight we're going try some muscle relaxers before bed and see if that helps. Wish me luck!

One thing I didn't mention is that I've basically been diabetic since transplant. Diabetes is a common CF complication, particularly as people get older, due to pancreas damage. Diabetes is also not uncommon post-transplant due to medication side effects. I was already hovering on the borderline of diabetes before transplant, so this may be the thing that pushes me over the edge. Or it may be temporary while my body heals and adjusts to new medications. Either way, I've been learning how to check my blood sugar and give myself insulin multiple times a day, and will continue doing so for the foreseeable future. Fortunately I'm not phased by needles and am used to medical routines, so it hasn't been difficult. If this is the price I have to pay for breathing, I will gladly take it!

Yesterday we finished the prophylactic IV antibiotics to prevent infection post-transplant, and my other IV medications were changed to oral or nebulizer meds. Since I'm now done with IVs, tomorrow I'm scheduled to have my port removed. A port is always at risk of infection, and I'm at even more risk now that my immune system is suppressed to prevent my body from rejecting my new lungs. I shouldn't need regular IVs now that I have new, healthy lungs, so hopefully I won't need the port anymore. Since I'll already be in the OR and under sedation, we're also going to do one more bronchoscopy to clean me out. And then... There's nothing else keeping me here! The current plan is to send me home on Wednesday!

I have been gradually allowing visitors as I've been feeling stronger. Please coordinate with me so I don't have too many people at a time and to figure out what times are good for visiting. And most importantly, any visitors MUST be COMPLETELY healthy! I can't be around anyone showing ANY signs of illness, or who has been around anyone who is ill and might have picked something up but not be showing any symptoms yet. My immune system is suppressed to prevent my body from rejecting the lungs, which means not only am I very vulnerable to picking up any infection I'm exposed to, but my body will be less able to fight off infections and they will cause more serious illnesses. What would be a simple cold or stomach virus for a regular person could land me in the hospital or even be deadly. Catching an infection can even trigger rejection, so I will be spending the rest of my life being very careful about trying to avoid germs. So if you're thinking of visiting, make sure to be VERY careful about protecting my newfound and fragile good health!