It has been a long week. We are finally starting to get some answers and paint a fuller picture as test results keep trickling in and watching how I respond to various treatments.

I had an Esophogram yesterday to look for evidence of acid reflux; the study was conclusive and distinctly showed active reflux. It feels good to finally pinpoint a definitive symptom because that means we can make a plan! (If you know me; I am a planner. I absolutely despise ambiguity). I have begun a PPI (a proton pump inhibitor, a.k.a an anti-acid). Normally one begins a PPI right after Tx as a prophylactic measure; reflux can cause serious damage to transplanted lungs; the wear and tear on the esophagus causes an immune response in the lungs that can unleash a domino affect of complications that lead to rejection).

I could not begin a PPI seven years ago because I was still battling my chronic fungal infection and the antifungal medication severely interacts with PPI's in the liver causing major damage. CF life is full of Catch-22's; I would have become extremely ill and compromised from the untreated fungus so I had to stay on the antifungal thus putting me at risk for reflux without being on a PPI…… at the time the fungus was more of an immediate threat than reflux.

I do not have really severe reflux so we are starting with treating it with meds not surgical intervention. (for REALLY acute acid reflux they do what is called a Fundoplication; that is a fancy way of saying we are going to tie your stomach in a knot. This is really major surgery, one I am not eager to have because you can’t puke after. What is one to do if one has the stomach flu?! Or food poisoning?! Or has one too many shots of tequila and needs to vomit and pass out in a gutter…..These are important life scenarios to evaluate). I am also just really fucking over having surgery.

The evidence is mounting up for the other major culprit that we have suspected from the beginning; my chronic sinus disease. I have the sinus surgery on Tuesday so that component will be addressed.

The next step is to let me heal and watch and wait. With this second round of IV prednisone, treating the reflux, and having the sinus surgery we will be treating the two primary sources that are causing the massive inflammation in my lungs and causing lung function to drop.

My doctors are reasonably optimistic while be honest and realist. A combination I really appreciate. I am a no bullshit kind of woman; tell it to me straight no sugar coating ambiguousness. I hate that shit.

If the sinus surgery, reflux meds,  and steroids work I should see a jump up in my lung function. ( most likely not back to my previous baseline, but higher that 37%, re-stabalization, hopefully going off O2, and some room to work with rehabbing up to better lung function). Then it is a matter of assessing if any permanent damage has been done to the lungs. The odds are in my favor right now for that piece because I am not suffering from a massive lung infection like pneumonia, the flu, bronchitis, pseudomonas, etc. So much of this information is new for me because I have been so lucky with my Tx; I have not dealt with major rejection and infection issues.

The next phase post-surgery will be to try and gain some ground with reconditioning by doing Pulmonary Rehab; conditioning and strengthening the lungs after all this stress and trauma. (Kind of like rehabbing a knee after you’ve blown out your ACL, but different because knee injuries typically don’t kill you). I will start that back home in Eugene after I have had a few days to rest from the sinus surgery.

This is not the summer I planned for after graduating from college, but life never goes as planned. One of my favorite quotes that I come back to often is from Eleanor Roosevelt: “Sometimes you have to give up the life you planned in order to live the life you were meant to lead.”

This is never been more true in navigating life with a chronic illness. Trying to find my place and purpose in the world after my Tx has been the biggest struggle; I don’t fit anywhere. I have always been an outlier because of the regimented and restrictive nature of my life in how I have to manage this disease. Understanding the purpose of it all is an infuriating philosophical journey.