Coming To Terms

It's almost midnight and I am exhausted. I arrived home from the hospital last Wednesday. I am so grateful to be free of the confines of four walls. I will be on IV antibiotics for another month along with a nebulized antibiotic and two oral antibiotics. Although the the strain of pseudomonas that I carry is resistant to each of these medicines, they seem to be having a synergistic effect and I am getting better.

I am continually coming to terms with how sick I am. I'm not sure if it's denial. I am aware of the facts: My lung capacity (FEV1) is at 31%. My lungs have lost much of their elasticity due to scar tissue caused by so many infections. I have had 3 lung collapses and statistically will have more. Pneumothoraxes (holes in the lung) can lead to respiratory distress and heart failure. Lung transplantation is not merely a life extending operation, it is life saving. I know the facts yet I still struggle to accept that I am this sick.

I am a survivor, a fighter. I don't know when or how to give up. This has served me well at times. But now I feel tired. The trials of life are wearing me down. I am coming to a place of giving up, letting go.... surrender?!? Didn't I do that already?

hospital update

I want to walk outside before the sun sets. After 5 days in the hospital I am feeling the need to commune with Mother Nature before retiring to room 921 for another night of luxury here at UT hospital, but first, an update.

The doctors took out my chest tube on Friday and my right lung is staying expanded. However, I developed a fever that evening and my oxygen saturation level dropped low. No matter how deep I inhaled I simply could not catch my breath. As panic set in and erased rational thought my nurses (notice they are now, MY nurses, not just the nurses) came to the rescue with calming words and an oxygen catheter. They quickly reassured me that I was not some mad, mutated mermaid slowly drowning while attempting to live underwater. I was safe on dry land.

**Disclaimer- this blog was written while I was under the influence of mild narcotics so read it with a grain of pepper.

My birthday

I have a wonderful problem, it's really quite a delightful dilemma. Today is my birthday. I am forty years old. There have been plenty of times that I wondered if I would live to be this old. The last ten years have been especially challenging. I shifted from having a disease that served as a footnote in my life to a disease that orchestrates my daily routine, dictating my schedule, what I can do and what I can't do.

I was diagnosed with Cystic Fibrosis when I was eighteen months old. At the time the doctors told my parents I would be fortunate to live to be eighteen. Much has changed since then , early diagnosis and better treatment means someone born today with the disease will live an average of thirty-four years. I am forty years old! I made it to the next decade. I am blessed.

I am plagued with a question. Why me? Why am I fortunate enough to live while others with the disease fight harder and live shorter lives, many dying before reaching adulthood. I do not know the answer. However the inquiry leaves me with a hyper awareness that our lives are not to be taken for granted, each day is a gift bestowed on us by the author of life and death.

The problem I spoke of earlier involves a lack of planning. I never pictured myself living this long. It felt a little presumptuous to think I could live to be forty. Even now, the idea of being this old is settling in. I'm thrilled to be here, quite curious to see what the next chapter of my book will look like.