I never thought in a million years I would have made it this far. 4 years ago, I ended up coughing blood to the point I needed an embolization to stop the bleed. For some unknown reason I came out of that surgery with a traumatic brain bleed that we can only point back to human error during surgery. It threw my life into a downhill spiral that caused me to need Bipap, oxygen, and began the initial discussion of transplant for the first time. Time goes by and my problems seem to pile up. 87 day stay. In and out of the ICU. 2 lung collapses. Being listed at UTSW in Dallas for 2 years. Numerous chest tubes. 2 pleurodesis procedures to adhere my lung to my chest wall. 2 devastating calls for lungs that resulted in dryruns. Being diagnosed with MAC. Having to have 12 antibiotics that led my body into uncontrollable fevers. Taken off the transplant list. Reaching out to Houston Methodist for transplant. Being sent home on hospice. Accepting my fate. Saying goodbye to everyone that I love. But deep inside, I wasn’t ready. I regained my strength. I went to Maui to die and surprisingly to everyone, I RECOVERED— I recovered in the most beautiful place on the planet. I got strong. I grew in so many ways. I came back home and I shockingly stayed out of the hospital for an entire year but I still have CF. My lungs were still loosing their fight. We started reaching out to every transplant clinic in Texas but I never forgot about Duke in the back of my mind. With every denial from each clinic we sighed but we were starting to get excited because we knew that once I would get a formal denial from each transplant clinic in Texas, we knew my insurance would allow me to go out of state......
So here we are. I up rooted my family who has lived in our same beautiful Texas home. Moved 18+ hours to North Carolina. Spent every single day filled with appointments, tests, and procedures. Spent endless hours every day pushing my body to its limit at Pulmonary Rehab.
And here I am standing at the finish lane waiting for my time to cross. So as I sit by my phone, with it on loud, 24 hours in the day, waiting for that random “NO CALLER ID” to come through, I think. I think of the time it took me to get here. I think of my parents who have put their life on pause for me. I think of the doctors working endlessly to find that perfect pair of lungs for me, but most importantly, I think of my future donor that is enjoying their lives, their families, and I hope and I pray that they find their peace. I hope they know that I will forever respect their precious gift and that I will always thank them for letting me live the life I have always dreamed of.♥️
Just wanted to share my story of how I got here.
-Thank you ALL for the ongoing love and support, Elissa. XoXo.
