Meet Fatboy’s CF Coordinator: Sue

I went out on a limb one day a while back and asked my totally awesome coordinator if she would be willing to answer some interview questions so we, as CF patients could get her perspective on what she does and what we do/do not do as patients. I was threatened with life and limb or something about never getting another Rx again if the photo we took at Great Strides ended up on the Internet, so this post is sans-Sue photo. Instead, I’ve used a photo of a person pretending to be Sue. Just so we’re clear – this is not Sue (of course, she knows that!), so I can continue to receive treatment at my CF center.

She warned me of her rambling answers, but after reading through them, I have editorially decided to leave them be, and de-labeled them as rambling. It’s rather a stream of consciousness that makes perfect sense. I think they tell an interesting story that I’d never heard, and I’m sure most of you haven’t either.

Fatboy: Ok, so I know you’re an RN, but how did you get so darn good at being a coordinator with all of the administrative things that you do? You’re undoubtedly one of the reasons I’ve been able to get and remain compliant because of easy e-mail access to the doctors through you. Before it was like jumping through hoops to get meds or an appointment. Did you set out to change that or was that why you were selected as the new coordinator. Mad props to your administrative abilities. I couldn’t do your job.

Sue: My position was a created one. There had never been a solely designated CF coordinator or research nurse. The coordinator who did CF also did pre/post transplant. The research options with CF, as you are well aware, have increased significantly. The decision was made to develop my position. I had worked with Dr. Rolfe on the transplant unit for 7 years, so I knew him and his wife Nancy. They talked with me about the position and at the time the schedule fit the needs of my family. I honestly didn’t think it through any more than that. It was sort of like my initial decision to become a nurse. I had planned to be a veterinarian, got distracted during school, but was working as a vet tech since high school. I, on a whim without any thought, decided that it would be easier to watch people die than pets. When I look back and realize my extreme naivety, I laugh. I still remember my first patient who expired. He was 19. He and his family impacted me greatly. I learned that even though it is significantly more painful to participate in people’s suffering, it is incredibly more fulfilling to even attempt to ease it.

Fatboy: Did you have to take time to consider who the patients were before taking on this position? It always impresses me that someone (doctors and nurses) would choose to work with CFers because they have always been tagged as early terminal in nature, so you’re setting yourself up for a lot of heartache. How did you make that decision or did you just have to see it as a job and deal with what comes with it?

Sue: CFers are special, you are right, with regards to being told early on their lifespan will not be as long as others. That doesn’t bother me as a theory so much, since I am acutely aware that time is a gift and no one but God can decide how long you get to keep that gift. Every day could be your last. I don’t despair that fact, but am becoming acutely aware I am going to be grieving with some of my families soon. That is where the question of compliance comes in later on.

Another reason I decided to take the position was due to an amazing woman, Karen Campbell. I met her at a back to school function at my son’s school. She was utilizing oxygen, so I couldn’t help but strike up a conversation. Karen had moved to Tampa from Jacksonville to treat with Dr. Rolfe. She had CF and was needing a transplant. Her son and mine were in the same 4th grade class, the only 4th grade class, it is a very small school. Any way, she was amazing, living life fully, never using her challenges as an excuse to avoid living. Unfortunately, she passed away before the school year even ended, prior to receiving a transplant. She was my first exposure to a CF patient prior to transplant. All the others I knew were post-transplant and they were amazing, too.

I like to be in control. That is why I try to give my patients easy access to me. I don’t like the 1800 system here. I don’t like pushing 3 to get another prompt to push another number. You should see me when I am attempting to get a live person at a mail order pharmacy or an insurance company. I rant and rave the whole time to the stupid computerized system. By the time I reach a live person, I am at the end of my rope. So, I figure I would rather talk to people immediately, while they are calm, then try to calm them down after the fact.

Plus, I like talking with my patients. I love my coordinator part of my job much more than my research part. I am not detailed oriented enough with regards to research. I don’t want to fill out 8 forms that say the same thing. I understand the importance of that, but do not like doing it. Sometimes I dream of adding enough patients to my roster in order to coordinate 100% of my time. That being said, I love the research people I work with and love my boss.

I am a research employee, not a part of the transplant clinic. I am considered the “CF orphan.” I kind of float between the two worlds and it does work well for me. Especially on days like today, which thankfully are few and far between, when I feel like I am functioning rather below a normal level. I am sitting in the dark, playing the radio on the computer, with my lights off while I type this.

Fatboy: What advice do you have for the non-compliant segment of your patients based on what you get to see every week with those who are compliant?

Sue: I would advise the non-compliant people to strive for greater compliance. I read something that indicated doing your treatments today is like putting money in the bank for tomorrow. Was it you who said that? I cannot recall where I saw it. It is true. Whatever effort you put forth now will exponentially increase your likelihood of better health in the future. I know a lot of my non-compliant patients just want to be “normal”, but no one is.

Fatboy: What do you think is the biggest reason for non-compliance with adult CFers. I have my opinion for another day, but I’d love to know what your observations are since you see the broader slice of life than I do (how many pre-tx list patients are in our center vs those on the list?)

Sue: I think that noncompliance can arise from a variety of issues, including lack of funds, lack of time, wanting to live a “normal” life, fatigue, and depression just to name a few. It is hard, especially with teenagers and young adults, to see past the moment. It is like my thinking watching people die would be easier than pets. You cannot see outside of the here and now at that age. Everything is a drama.

I get frustrated when patients utilize the fact that they are going to “die anyway, so why bother”. Again, that can be anyone’s argument. That is an excuse plain and simple. I will fight for my patients until the bitter end, as long as they are fighting along with me. I can appreciate occasional non-compliance, I do it myself. I can appreciate being depressed, tired, feeling like it isn’t worth it – for a brief period of time. It is when people choose, and it is a choice, to live in that pit of despair that I have a problem. There are medications that can and do help with depression. There are ways to learn that many people have it harder than we can ever imagine. I get angry when people decide their life isn’t worth anything and throw it away.

So many people do that across the board. Life is not easy, for anyone. Life is not fair. I could talk about America now, ranting on about how we are turning into a nation of comfort seeking, deserving something for nothing group of people. I truly am on a soapbox, sorry! My poor husband says I carry it around with me constantly. (Editor’s note: Fatboy’s soapbox has a shoulder strap for comfort.)

Fatboy: Wow! Thanks for letting us look into your world. You’ve certainly lived up to your goal of being accessible. I can order prescriptions via e-mail or cell phone without pushing “3” to talk to someone for the first time in my life. Readers everywhere are jealous, I know. Every CF center should have a Sue. Someone get to work on cloning her, stat!