(UPDATED: 5/4/09 to include a link to Run Sickboy Run, all about one man's journey with Cystic Fibrosis, quickly becoming my favorite patient blogs.)
You bet they do.
On Wednesday, I had my first experience in clinicals taking care of patients with Cystic Fibrosis at Big University Hospital. You see, at Big University Hospital, they have an actual pulmonary inpatient ward, so I felt very much appreciated the entire day, because these patients are the ones who know respiratory therapists by heart, having spent countless hours in ERs, clinics, and hospitals for treatment of COPD exacerbation, refractory asthma (asthma that is resistant to convential methods or treatments, often requiring hospitilization), and a number of pulmonary infections related to diseases such as Cystic Fibrosis and Bronchiectasis.
The one that stood out the most was a patient with CF. This is just a page in her story:
For those of you who are unfamiliar with Cystic Fibrosis, here is what the typical day is like for my 15 year old patient with CF:
Waking up at the crack of dawn, treatments are as follows:
2. hypertonic saline SVN to aid in the clearance of retained secretions (~9 minutes)
3. Inhaled Tobramyacin-- 28 days on, 28 days off: an antiobiotic given by nebulization to prevent pulomonary infections caused by immobile secretions (~8 minutes)
4. Pulmozyme per small volume nebulizer-- also known as dornase alpha, which hydrolizes the DNA present in the sputum of CF patients and reduces viscosity in the lungs (~10-12 minutes),
5. Advair diskus, one puff, an inhaled corticosteroid also used for anti-inflammatory effects (1 minute)
Total: Approximately 40 minutes (mind you, this is an estimated time given without consideration to the fact that CFers must often stop treatments due to heavy bouts of coughing)
1. Hypertonic saline 7% neb (~9 minutes)
2. Albuterol 0.5 neb (~8 minutes)
Total: 57 minutes
3-4 hours later:
1. Xopenex SVN (~8 minutes)
Total: 1 hour, 8 minutes
1. Albuterol SVN with ThAIRapy Vest (~8 minutes)
2. Hypertonic saline 7% neb (~9 minutes)
3. Tobramycin neb (~8 minutes)
4. Advair, one puff (~1 minute)
Total: 1 hour, 34 minutes
There are, of course, variations in this depending on the patient's status and a number of other factors. Sometimes, the ThAIRapy vest is used four times a day and Pulmicort nebs are given in place of Advair.
I was just preparing to set up Stacy's third treatment; I had been in the room for 30 minutes, much longer than any of my other patients.
"Thank you," she said. I could tell she meant it.
"Well, it's not just you. I mean respiratory therapists in general. Just, I don't know, thanks. I know this isn't easy-- taking care of people like me."
I was almost puzzled for a second, and without hesitation, I replied, "Not a problem. I imagine it isn't easy, doing this at home every day. I'm more than happy to help out."
I was curious at this point. I wondered about life with this disease. I looked around the hospital room to see photographs of Stacy and her friends singing karaoke, dancing, and hanging out at the mall. To my left were cards from family members. And then... out of the corner of my eye I caught a glimpse of a photo of her junior high basketball team. Stacy was holding a trophy.
"You like basketball?" Nearly an hour of therapy without any conversation would have made for awkwardness. I'd never spent such an immense amount of time with one patient, but I didn't mind at all.
"I do when I'm not coughing up my lungs," she said, laughing a bit.
"That must be hard."
She set down her nebulizer and looked at me for a second. "Nothing is ever easy. I just take life one day at a time. Did you know that most people with this don't live past 40?"
I didn't know what to say. I paused for a few seconds, then Stacy spoke up again.
"Hey, I said most people. Not me-- I dream big."
Conversation died down after a few more minutes and I finished up in the room.
It's funny how things work. You spend hours in a classroom learning about diseases such as Cystic Fibrosis, then you enter the clinical setting, and the biggest lessons are sometimes learned from your patients.
Always dream big. Never sell yourself short, not for any reason.
Remember that often as important as it is for us to educate our patients, sometimes it is just as important for them educate us.
Keeping everyone with CF safe and healthy is something that health care providers take very seriously. If you are a health care provider it is a good idea to get a DMEPOS bond for added protection.