Never Downplay the Importance of Your Care team

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Luisa Palazola

My transition to adult care was a rocky experience that only the time spent with my pediatric team could prepare me for. I spent 10 years with my pediatric team and at nearly 22 years old, my pulmonologist was nudging me to move onto adult care. Begrudgingly, I accepted the reality that I couldn’t live my years out within pediatric care, and with a broken heart I began seeing the adult clinic in my city.

Despite my initial anxiety, I got along well with my new pulmonologist. We bonded over our travels and it was my first time using Spanish within the clinic setting. When I had a theatrical paranoia about a cyst that had developed in my breast, he assured me that it was probably nothing, but made sure to make a referral with a specialist to assuage my anxiety. Undoubtedly I felt acknowledged as both a person and a patient, and I trusted him as my doctor. However, coming from a clinic that ran like a well oiled-machine, there were inconsistencies in care that were immediately noticeable, and would only fester the longer I stayed.

Perhaps it was the positive relationship I had with my doctor, maybe the proximity the clinic was to my house, or the overwhelming anxiety that comes with starting a new clinic. But, I overlooked the fact that my new team was missing key roles that come within the territory of CF care. So, I found confidence in in my ability to self-advocate and the education that I had under my belt. It also helped to know that I was doing really well with a clinical trial I had been enrolled in. I believed that as long as I had access to my medicines, I would be alright. I underestimated the power of an incredible care team.

As time went on, it was evident that I couldn’t be my own support team. I could never replace the constant encouragement from the respiratory therapist while doing PFT and it wasn’t my job to ensure I could start IV antibiotics the day they were prescribed. It was also becoming clear that my team didn’t have the internal support necessary care for so many patients, and I was falling through the cracks of a dismantled system. I found my breaking point after learning through a third party that my pulmonologist was leaving the adult clinic.

That day I made an appointment with one of the best clinics in the country — three hours away from where I live. My consultation became a fresh reminder that healthcare is not just access to medicine, but a genuine collaboration between patient, care team, and medicine. With that, I decided it was best for me to make a permanent switch.

I don’t write this piece out of spite or anger, but out of my isolation and quite frankly, fear for what might happen if I continued to go unheard. I recognize that my (old) clinic was doing the best they could with the resources they were dealt, and part of me hoped to be a part of developing a thriving clinic. However, I had to remind myself that that wasn’t my burden to bear, and that my burden was unforgiving and time sensitive. I write to reflect on how I needed to learn how to operate within that situation to be able to advocate for my health and myself as a whole.

 

 

 

Luisa Palazola is a 24 year old with CF and currently lives in Memphis, TN. Luisa just recently graduated from the University of Memphis, and now she spends her time planning her next worldwide adventure, gathering medicine donations and sending them to Latin America, and taking selfies with wild fauna, family and friends. Follow her on instagram at @ladela9

 

 

 

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***Views expressed in the CFLF Blog are those of the bloggers themselves and not necessarily of the Cystic Fibrosis Lifestyle Foundation*** 

***Please speak with your physician before making any changes to your CF management***

 

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