After talking about quality of life in my healthcare class, I began to think about CF quality of life and the technology that has come about to make life easier.
Clearly, being sick ,being in the hospital, or having to do daily therapies isn’t very high on the quality of life scale, however it’s a lot better than what it used to be. When I was younger, I would have my dad do chest PT on me every single day. It took up not just a lot of my time but also a lot of my dad’s time. Not to mention, a lot of space, as we piled up pillows on the couch. It wasn’t necessarily something that could be done anywhere and by anyone (given they hadn’t learned). Then, I had ancient nebulizer machines that were louder than level 60 on the TV’s volume and that took like seemingly forever. The only inhaled medication I had at the time was pulmozyme.
Now, there are many many inhaled antibiotics available. With the development of hypertonic saline, it is easier to get stuff out of the lungs. I no longer need my dad or tons of pillows to do airway clearance, because of the vest. Not only that, but the vest has gotten smaller and more portable making quality of life that much better because I can travel and take my vest anywhere! I now have the Respironics MiniElite neb that is 10 times quieter than my previous neb and 20 times quieter than the one I had when I was little. Not to mention, it is teeny tiny, can run on batteries, and can be brought anywhere! The E-flow is another innovation that makes therapy easier. Though I have it for a study right now, I know that it has changed the way CFers get their inhaled cayston (an antibiotic). Where TOBI and other inhaled antibiotics take about a half hour, the E-flow takes only 3-5 minutes! Imagine how much more time we have!!
Technology has improved in the hospital and doctors office as well. When I was younger, I would go to the PFT lab and do my PFTs on a machine three times the size of me. Now, all they need is a computer with a little plug in that can be brought all around the hospital, making it easier for me to stay away from CFers also in the PFT lab (so I don’t infect them). Where my medical record used to weigh probably 20 pounds and was bigger than my head in thickness, it’s now all on the computer. My doctors can now easily find information about medications, tests, and past sicknesses.
As far as hospital admissions go, it’s a lot easier to go home on IV antibiotics now than it was in the past. There are portable iv machines and with e-mail its easy to stay in contact with my doctor when I’m at home on IVs. A round of IV antibiotics no longer means missing weeks of school, I can still live my life at home (assuming I’m not too sick). In the hospital, its no longer a bore as there are laptops and internet to keep in touch with everyone and everything.
With online pharmacy’s, its so easy to get my meds on time. I barely have to go to CVS to pick up all my prescriptions. With just a few clicks, a three month supply is delivered to my door within a couple days. Every little convenience helps!
I expected to be a lot sicker by the time I hit 20 than I am. I’m a lot healthier than I was even 2 or 3 years ago, and a lot of that may be attributed to how easy it is for me to be compliant with all of the advances in technology and medication (along with EXERCISE!)
For CF parents reading, look how far CF care has come even in 15 or so years. Imagine how far it will come by the time your child is older. Right now, with vertex’s new drug being researched, there is a lot of hope for a medication that will completely alter the way we care for ourselves. Inhaled drugs are getting faster and easier to administer, and research is coming so far in developing drugs to further clear the mucus in our lungs.
I can’t wait to see how far research and technology will come. Until then, we can continue to support the Cystic Fibrosis Foundation who does so much to add quality and length to our lives. I am so grateful for all my family’s friends and relatives who have supported CFF in the past because it has truly paid off!
