Last week Eric & I headed out of state to get another opinion on my health. I had one goal in mind and it was pretty simple: I wanted them to tell me what they thought about the state of my CF health.
You all know about all of the CF intestinal issues. My lungs, however, have also not felt very good for the better part of 16 months. It seems like my sputum cultures are growing the least amount of bugs they ever have but my everyday lung symptoms seem to be getting worse. It also seems like I have had almost zero remission after hospital tune-ups OR, worse, my lung function actually declines afterward. This is not normal for me at all and I wish I knew why.
I expected them to say that my CF was declining as expected. After reviewing my health history and assessing me I thought they would tell me that, for the most part, my treatment plan seemed appropriate. I figured they might have some tips for me or maybe some education that may be useful.
The reality of what actually took place could not have been farther from anything that I was imagining. I mean this in the best possible way. It's easy to explain, really. We spent 6 of the most efficient & informative medical appointment hours of my life at the clinic. So many questions were answered-some that I've had for years and years. Therapies were modified. Treatment plans were adjusted. Medications were changed. Lots of imaging studies were done. But mostly, it was a true collaborative patient-practitioner exchange. Something that I needed so badly-not only because my physical health is at stake but because something positive like this needed to happen in the name of preserving my spirit. :) I am not sure what I would have done if I had left another clinic wondering what I was going to do. Thankfully, I DON'T have to wonder at all. Thank you to the amazing team there. We are go grateful.
I could not possibly have enough room on this blog to review everything single thing that was explored at the appointment. What I can tell you, however, is that so many of my health mysteries-things that I have tried to get diagnosed, treated, etc. were acknowledged and addressed. I got so many answers and explanations and education that when I left there I felt an enormous sense of relief about my health and my future. Even though we may have discovered a few things that are far worse than we thought-more on that when I hear back from the team in the next week-I now actually have a sense that things are going to be okay. Ahhhhh!!! And that feels amazing.
My Spirits Are Lifting, Much Love,