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Ask the Health Leaders: Working With CF Specialists

Cystic fibrosis (CF) healthcare teams tackle a variety of health issues, and therefore can be made up of many different types of healthcare professionals and doctors. Some examples include respiratory therapists, nurses, pharmacists, social workers, dietitians, and uniquely, a CF specialist.

We asked our CF health leaders: Do you work with a CF specialist? Was it difficult to find them? Are they in a convenient location to you?

CF specialists

Response from Moriah

I do work with a CF specialist at University of Washington Medical Center. Luckily it was not difficult to find them, as I just had to ask my primary doctor where the best CF center was that relatively close and they referred me. Unfortunately, I live quite a ways away from them, so appointments are often an all-day affair, or multi-day affair if I have multiple appointments in a week.

Response from Nicole D

I have been cared for by a CF team since I was born. As I’m reading this question, I recognize how fortunate I am that there are CF centers in close proximity to where I live; as I am sure there are some living with CF who may have the added burden of significant travel to see their care team. I couldn’t imagine the additional stress that may cause.

I saw one CF specialist for the first 18 years of my life until it was time for me to transition to an Adult CF care team. The adult team was an additional ten minutes further from my home (45 45 minutes in total), so it was relatively seamless.

Initially the transition brought on many feelings including anxiety that my new doctor wouldn’t know any of my history or know what was “normal” for me.

Almost immediately I connected with my new doctor and the rest of the care team. I have seen them for the last 20years and counting. The team feels like my extended family and I am incredibly grateful to have them in my life overseeing my CF management and care.

Response from Jennifer

When my husband was relocating (military) he made it a priority we were located near a CF center. So, when moving to NC I knew I’d be seen at one of the top CF centers in the US.

I work with a team of CF specialists, located about an hour and twenty minutes from me. The distance can be frustrating at times, but overall, I know it could be much worse.

Response from Ella

I have an adult CF pulmonologist that I have been treated by for the last 10 years. We have a great doctor to patient relationship. It wasn’t difficult to find him because when I transitioned from pediatric to adult care, he was the adult pulmonologist at that care center which is located about 10 minutes from my home. For the last few years, I have also been seen by a transplant center which is about 2.5 hours from my home. I was referred to that center from my local adult pulmonologist as the two care centers have a good relationship and collaboration in care for their patients.

Response from Katelyn

I do work with a CF specialist and they’re amazing. It wasn’t difficult for me to find them because I have been going to the same CF Care Center since I was a baby. I had the same CF pulmonologist until I aged out of pediatrics, and I have had the same adult CF pulmonologist since then. Their office is a few hours away, so it isn’t an awful drive away, but I do wish that they were closer.

Response from Janeil

My CF specialist wears many hats–not only is she my doctor that cares for my CF but she truly is my main health care provider. Because CF can be so complicated, my CF doctor manages a lot of different aspects of my health that may not be directly related to CF. I am lucky in that fact that I have attended the same CF clinic for 26 years and my clinic is very aware of my health history and personal life. My clinic is also very close to my house. (Fun fact: my CF clinic is also on the same campus as my college alma mater.) That has made it very easy to receive care from my specialist and the CF clinic over the years.

Do you work with a CF specialist? What has your experience been? Leave a comment below!

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