Communicating Expectations with CF Care Team (CF Clinic)
Cystic Fibrosis Care Centers (or CF clinics) provide a multifaceted care team to help treat the various aspects of CF. My CF care team consists of seven individuals: doctor, nurse(s), respiratory therapist, physical therapist, social worker, research coordinator, and dietician.
During my appointment, I meet with each one and make sure I have my questions answered and goals addressed. I usually prepare for CF clinic by writing out a few concerns/questions I have, any prescription refills I need, or other issues I may be experiencing.
Each member of the CF clinic has an important role
They check me into CF clinic, check my vitals, go over current prescriptions, and talk about current goal/concerns (for example: focusing on weight gain). They are my “go-to” person if I need anything at all.
RT's have me perform a pulmonary function test to assess my current lung function. We discuss my therapy treatment plan and how it’s working for me. I currently do between 7-10 nebulizers a day. I take Pulmozyme, albuterol, hypertonic saline, and I alternate months with two antibiotic nebulizers. I also have a portable vest I use twice a day as well.
There is a mental health assessment that I usually do while I’m at CF clinic. It helps to show the social worker my area of struggles, usually anxiety. Anxiety and relaxing are my biggest issues that we discuss. The social worker can help with additional outside resources and point me in the right direction for help for many issues, whether mental health, financial, or school-related.
Weight and lung function are two biggest concerns for me. My dietician and I discuss what I typically eat, my calories, and options for on-the-go food. We usually discuss high-fat foods that I can take with my Symdeko.
My dietician is also responsible for keeping an eye on my yearly glucose test and vitamins levels. I currently do not have diabetes, but I do take a lot of vitamins and supplements daily: vitamin A, calcium, DEKAs multivitamin, probiotics, vitamin E, vitamin D. She also helps coordinate my meals/snacks when I’m in the hospital.
PT's usually do testing such as the step test. They watch my heart rate and discuss my current level of exercise at home. I have CF-related arthritis so we usually discuss options I can do with CFRA. They also may test my flexibility and strength. PT's help build an exercise plan that I can commit to at home without feeling overwhelmed.
My doctor usually comes in last so we can talk about any issues. We discuss goals, weight, lungs, CFRA, and anything else I need. She listens to my lungs and does a physical exam. After all the results from the day, we may discuss changing my treatment plan a bit or adding a new medication. Sometimes we need to do a round of IVs and sometimes no changes are needed at all. Each clinic is different, so depends on how I am doing currently.
I stay in regular contact with my CF clinic
I spend a good amount of time with each care team member. Each aspect of my health is equally important. CF clinics aren’t the quickest, but they are very thorough. Sometimes I need to update my x-rays, labs, bone scans, or other test results. I either do them at the clinic or make an outpatient appointment in the next week or two.
I usually go to CF clinic once every three months, but depends on how I am doing health-wise. More often than not, I go when I’m feeling ill or having surgery. In between my CF clinics, I keep in contact with my care team about any concerns or changes. It’s important for me to keep in communication with them. Some patients email, or use online portals. I tend to call and leave voicemails for my nurses, then they call me back with further instructions. I like using the phone because I feel it’s fast, direct, and personal. But, any method of communication would work.
Communication is key
Keeping my CF care team in close communication helps keep my health stable in between clinics. A lot can happen in one week, let alone the twelve weeks in between my CF clinic appointments. Communicating clearly with my CF care team also helps us to bond and understand each other. Getting to know my CF care team helps me to understand their treatment decisions and helps them to understand all my needs and hopes.
I have always felt very fortunate to have CF care team that understands who I am as a person, not just as a patient. We have come to form not only a medical and professional relationship, but a strong friendship as well. I’m very lucky to have them and thankful for all they do.
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