When I first moved here at Christmastime '09, my lungs were definitely not in the best of shape. The last couple of years in Phoenix were filled with increased tune-ups, and in May of 2008 I experienced a massive hemoptysis that lasted 10 full days. It had become increasingly difficult for me to take care of myself physically (finding time for treatments, getting enough rest), juggle a full-time job, and keep up with my regular church & life activities.
Tune-up: A term used in the cystic fibrosis community to refer to a preventive course of intravenous antibiotics and respiratory therapy. Depending on the doctor’s preference and the specific case of the individual with CF, a “tune-up” can last from 2 to 4 weeks.
Hemoptysis (hee-MOP-tih-sis):
| The coughing or spitting up of blood from the respiratory tract. |
| Throughout 2009, my PFT's had seemed to steadily decrease, and my overall lung capacity/function had been fluctuating up and down between 55%-70%. After having two IV treatment periods of 3 weeks each -- once in September '09, then just two short months later in November -- my lung function had finally begun to level out at 60%. PFT's, or Pulminary Function Tests: A group of tests that measure how well a person's lungs are working, and can help determine disease progression by tracking changes in lung function over time.  |
Jaden likes to do his breathing machine too ;-)
My November tune-up was actually completed while making the 3-day move across the country. I was finishing out the last week of treatment while literally traveling with an IV pole, a cooler full of antibiotics, and a huge storage bin full of medical supplies. Each night as Dad and I would settle into a hotel room, I would hook up to the good 'ole IV pole, administer the dosage and let the meds do their thing :) In the morning, I would hook up again and complete my morning dose before we hit the road again...
My own personal pharmacy!
Ahh, my life-long friend, the IV pole :-)
************************************************************
Since arriving and settling in to my new home in North Carolina, a LOT has changed. Lifestyle changes, financial changes, emotional changes... all contributing to ONE BIG change: A CHANGE for the better in my PFT's. FINALLY!!!!
In order to understand my excitement, you need to have a basic grasp of the parameters that measure my lung function...
PFT's are measured by certain parameters, which are as follows:
FEV, or Forced Expiratory Volume:
The amount of air which can be forcibly exhaled from the lungs in the first second of a forced exhalation.
FVC, or Forced Vital Capacity:
The amount of air which can be forcibly exhaled from the lungs after taking the deepest breath possible.
The FEV and FVC readings put together are what make up my lung capacity percentage -- in other words, the 60% previously mentioned.
Here is an example of what my tests look like when I breathe into the machine. The graph measures my actual breath compared to what a person my age/weight/height with normal lungs should have. That is the predicted (represented by black line):
During the test I usually take as deep of a breath as I can, then blow it out as fast, hard and long as possible. Here's a sample picture of what it looks like:
On May 4th -- during my last check-up -- I received some of the greatest health news I'd gotten in a very LONG time...
My FEV (Forced Expiratory Volume) had gone from 60% to 76%!!! Not only that, but my FVC (Forced Vital Capacity) had gone from 74% to 100%!!!!!!!
Here's a glimpse of life during a tune-up...
Yes, life has definitely changed. The doctors described my last report as fantastic, ending with "So whatever you're doing, keep doing it." Wow. So what have I been doing??
First of all, after only ever seeing my family but once a year, suddenly I was surrounded by them 24/7, a luxury I'd not had for five years. Two little individuals in particular have contributed to my daily joy. Affectionately referred to as G & J, Gideon and Jaden have played an ENORMOUS part in my decision to leave Arizona and come here.
Recent footage of the boys during our last Florida trip:
Secondly, I finally tried what I had been on the fence about for years. I pushed through the mounds of paperwork... completing the intense process of applying for Social Security disability benefits... and GOT IT. This. Was. H U G E. It has not only given me much more free time to complete all my treatments and medication, but has also allowed time to give my body the REST it had needed for a very long time. And my stress level has gone down TREMENDOUSLY. I no longer have to worry about pushing my body full time in order to make ends meet. The financial stress has been taken away as I now live with my parents, so I am able to focus on finally paying off debt.
Gideon and I -- loving the ocean together :-)
And Thirdly, I found a new medical facility with a CF Center, and the doctors there prescribed something new for me. Something, in which I have found, has helped me immensely. Advair is a drug that focuses on diminishing the inflammation in the airways, thereby opening them up to allow better airflow for me. As far as the difference I feel in my breathing, it has literally been a breath of fresh air. For the first time in a LONG WHILE, I feel like doing things again. Doing things that I love -- like dancing and hiking -- that I didn't feel like doing for the past couple of years, simply because I felt so bad.
An X-Ray of a healthy person's lungs...
VS.
An X-Ray of someone with CF
(the cloudiness is the scarred lung tissue)
***********************************************************
September is rounding the corner, and so is another check-up. In a few weeks I'll know where my numbers lie, and am quite curious as to what they will be. Mostly though, I am still reveling in my last report and just trying to be thankful for the last 6 months. When it comes to breathing, they have literally been refreshing.
Now if only everything else could just fall in to place...
