I was diagnosed with the big "E" in 1989. Along with this news I was told my life was over, as I knew it, and the grim prediction of no real quality of life was now mine. I would be put on oxygen and use a nose hose to breathe...attached to an oxygen tank.
My femininity was gone. Being able to breathe did work, but I felt like a freak on display...people would stare.
On a visit to the pulmonary doctor she asked, "Where is your oxygen?" I replied, "It's in the car." I will never forget her words. "Well, it's really helping you breathe out there, isn't it?" I felt like a complete idiot...and after that, I never went without it again. I'm a vain female, but that was just plain stupid. This is how I got over people gawking at me. I needed to breathe worse than worry about someone gawking at me!
My pulmonary doctor suggested a pulmonary rehab program at the Dayani Center at Vanderbilt Medical Center in Nashville. I took the six week pulmonary rehab course, which also incorporated graduated exercises that are closely monitored by respiratory therapists, and education...which is a necessary and vital component.
You learn you're not the only one with this disease, and classmates have the same feelings I did. Interaction with other patients helps a great deal. You learn how to better function in life. It was a tough course, but well worth the effort. It dramatically improved my pulmonary function status along with the exercise.
My doctor asked me if I would like to take part in a study at Vanderbilt for an implant for oxygen. I was over the moon with excitement. I thought about nothing on my ears...and no nose hose. It was a dream come true.
Just to show that everything does not go smoothly all the time, I had a small problem in surgery, and they had to insert a second catheter, which worked just fine.
At this point I was no longer part of the study, and I seemed to have fallen through the cracks. My doctor had gone on maternity leave, so I too matters into my own hands. I found Trans-Tracheal Systems on the internet and was referred to a pulmonary fellow who, in turn, introduced me to Dr. Robert Miller at Vanderbilt University. As a result of his care and guidance I have had no hospitalizations. However, I did go back to rehab, and the pulmonary staff was amazed at the improvement in my numbers between my first rehab (pre-TTO), and my second session (post TTO).
No more gasping for air! My workouts were so smooth...and indeed, I was a different person. I also use less oxygen.
Since the TTO was put in back in 1991 I have been blessed to have Dr. Miller as my pulmonary specialist. He's simply the greatest.
This small catheter, known as the scoop, or TTO, has given me a life. I can taste and smell again, my energy is higher, I sleep much better, my color is good, I no longer look sick, I have my femininity back, I wear lipstick...and can kiss once again. I simply cannot imagine life without my SCOOP.