Spend a Day with a CF Nurse Coordinator!

My day starts with a phone call as I take off my coat. A mother, whose son was brought into the emergency, has concerns. I check my other messages to make sure there is nothing else urgent before I visit the patient to see how I can help. After assisting the patient in emergency, I go to see the hospitalized CF patients.

First, I go to pediatrics. Johnny, a five-year-old who was admitted last week with a chest infection, will be in hospital for intravenous antibiotics for two weeks. Because his mother has a new baby at home, she can only visit occasionally. Johnny is full of energy and a challenge for the nursing staff, so I sit with him and encourage him to eat his breakfast.

Then, a doctor stops me in the hallway to ask if I could speak with a family about CF? They have one positive sweat chloride test and are booked for another. I gladly answer their questions and leave telling them that I will check back tomorrow when the next result is ready.

I stop off at the social worker’s office to let her know that a family she needs to see is coming to the clinic this week. Then I continue to the adult ward.

I meet Dora, who is admitted with pancreatitis. She is worried about taking so much time off work this year because of her health problems. We discuss how she can minimize her days off.

In the next room, a young adult is fast asleep. He awaits a lung transplant; we only hope it comes soon enough. All we can do is support him through this time.

I stop to talk to the nursing staff. It is hard to deal with someone their own age afflicted with this condition. I provide hugs and encouragement.

When I leave the nursing unit, I pass the chapel and stop in for a few moments to pray and gather strength.

When I return to my office, I get a ‘We’re pregnant!’ phone call from a CF patient and I rejoice with her. We had conversed many times as she and her husband worked through this decision and waited for a positive test.

I take other phone calls:
“My daughter won’t take her enzymes.”
“I am scared, my son is going away to university across Canada.’ – “Yes, they have a clinic there; I know the nurse and she can tell you about the clinic.”
“I have an increased cough and more secretions, what should I do?”
“What does this ‘pseudomonas bacteria’ mean?”
“Can you re-order my medication?”
“I want to make a memorial donation - how do I do that?” (I give them the number for the CF Foundation.)

My colleague stops by to ask if I am ready for our walk. I look at the papers on my desk and start to say “Not today,” but I change my mind. I know I have to practice what I preach and to take care of myself as well. I come back from our walk refreshed again, and grab a bite to eat.

Next, e-mails are waiting for me:
A nursing instructor: “Can I come talk to the students about CF?”
A nurse from another province: “A person with CF is moving here, what is our drug coverage?”
The local CF Foundation Office reminds me of a board meeting this week (I sit on the board as clinic liaison).
Some team members ask about a parent night that I am organizing.
The Ethics Board has a concern about a research proposal submitted.

I move on. This afternoon I need to check the charts for the clinic tomorrow. It will be a busy day at clinic tomorrow: each team member, myself included, will see every patient. I will take throat swabs or sputums, review their medications, talk to them about their knowledge of CF, the treatments, exercise, new research, and assist them in solving any problems or issues.

I see that one seven-year old has moved and changed schools, and I make a note to talk to him about it. Does he need school pamphlets?, Are the enzymes kept in the office,? Does he need me to come and talk to the teachers about CF?

I call the dietician about an issue one of the families has. I speak to the physiotherapist about a teen who needs to learn other forms of physio. I see that three patients meet the admission criteria for a study we are conducting. I need to remember that at the end of clinic, I have arranged a meeting with a community social worker, a family and the team about ongoing problems.

Throughout the day I have gotten numerous pages: the pharmacy, the transplant team to discuss a patient, the nursing unit, patients asking for me, the doctor I work with, a doctor from an outlying hospital that has admitted one of our patients and is looking for information to assist him in the treatment.

My beeper goes off again, and it is my husband. Do I know the time? Yes, I am late leaving work again. Before I leave, I make a list of what I still need to take care of this week: review patient results, write letters for parents, make phone calls, compose an agenda for the team retreat, finalize research night.

Joan Tabak , a registered nurse, is the coordinator of the CF Adult and Pediatric program at the University of Alberta Hospital in Edmonton , Alberta, Canada. The program follows 220 persons with CF in Northern Alberta and British Columbia. Joan is the chair of Canadian CF Nurses Interest Group(CCFNIG) and sits on the board of the local CF Foundation . In the year 2000 she was recognized a Woman of Vision in the community . The clinic has participated in numerous research projects over the past 12 years and Joan acts as the research coordinator. Birdwatching, swimming and skating keep her busy in her spare time.