After the excitement settled, my friends all headed home but I had to pick up a medicine refill so I went to the pharmacy. Sitting alone, I was looking at the pictures we took and the gravity of the situation hit me like a brick wall. I couldn't help but start crying right there in the middle of the waiting room.
As a part of the community leadership team for the Junior League, I selflessly made a plug for a toy drive for NMCP months ago. I currently serve as the Chair of our Children's Initiatives Committee so my role is to connect our members to children-focused charities and organizations in need, so NMCP was a natural fit. But as a former patient, it held a special place in my heart. I still regularly talk with many of my doctors and nurses either through Facebook or when I'm at the hospital for an appointment or admission on the adult ward.
I know I will still be a hot mess on Wednesday, especially when I say farewell to my respiratory therapist, Barb, and my clinic coordinator, Ruthie, who have literally taken care of me since I was six years old. One of the double edge swords of being in military healthcare is that they have a very high turnover rate as staff gets new orders or deploys. It can cause some issues with continuity of care, but it also means that I got to meet and be cared for by an entirely new team of medical professionals every few years. Barb and Ruthie, however, work as civilians for the clinic and they have been with me since the very beginning. I honestly don't even remember going to a doctors appointment that they weren't a part of and I don't even know how I'll function without them moving forward.
I have been a patient of the CF Clinic at NMCP since I was six years old and was admitted to the that very pediatric ward more than 20 times in the last decade before transitioning to the adult ward. While I never had to spend Christmas in the hospital, some of the absolute worst days of my life have happened in that building.
I've had dozens of surgeries and procedures, and been to hundreds of appointments. I've gone from having lung function in the 90s to just 24%. I've had 4 severe drug reactions. I've been diagnosed with diabetes, mycobacterium, DIOS, MRSA, pneumonia, influenza... you name it. I've cried.. and I've made residents cry (sorry!). I've screamed. I've been speechless. I've felt pain that I can't even describe and I've felt completely numb, physically and emotionally. I've literally ran out of exam rooms because I just couldn't handle anymore bad news. I've wander aimlessly at 3am when I couldn't sleep and I've spend 22+ hours a day laying in a hospital bed cause I didn't have the energy to even stand up. I've gone from having to walk downstairs and two building over to the library to be able to get onto the internet to check my Myspace just once a day, to seeing the peds ward get its own wifi, to complaining endlessly and requesting a room change because the ONLY room on the entire ward that didn't get a good wifi signal was my isolation room and I was a college student with online classes to finish up. I've personally experienced them switch the brand of chicken nuggets they stocked three times and very unhappily watched as they took both the Pizza Hut AND the Taco Bell out of the food court. I did homework for high school, finished art projects for my associates degree in graphic design and wrote research papers for my bachelors in communications from the *comfort* of a hospital bed on the ward.
I've had dozens of surgeries and procedures, and been to hundreds of appointments. I've gone from having lung function in the 90s to just 24%. I've had 4 severe drug reactions. I've been diagnosed with diabetes, mycobacterium, DIOS, MRSA, pneumonia, influenza... you name it. I've cried.. and I've made residents cry (sorry!). I've screamed. I've been speechless. I've felt pain that I can't even describe and I've felt completely numb, physically and emotionally. I've literally ran out of exam rooms because I just couldn't handle anymore bad news. I've wander aimlessly at 3am when I couldn't sleep and I've spend 22+ hours a day laying in a hospital bed cause I didn't have the energy to even stand up. I've gone from having to walk downstairs and two building over to the library to be able to get onto the internet to check my Myspace just once a day, to seeing the peds ward get its own wifi, to complaining endlessly and requesting a room change because the ONLY room on the entire ward that didn't get a good wifi signal was my isolation room and I was a college student with online classes to finish up. I've personally experienced them switch the brand of chicken nuggets they stocked three times and very unhappily watched as they took both the Pizza Hut AND the Taco Bell out of the food court. I did homework for high school, finished art projects for my associates degree in graphic design and wrote research papers for my bachelors in communications from the *comfort* of a hospital bed on the ward.
Six years ago, I nearly died inside that hospital. And in six days, I will have my last ever doctor appointment there.
For centuries, the term safe haven has been used to describe a place of refuge or security. A place for someone to go to escape from an attack or danger. Looking back, NMCP has been my safe haven. That hospital, and more specifically Ward 4B, the pediatric ward... my pediatric ward... was where I went when I was in danger and it's where I found refuge. Being there meant that my cystic fibrosis was on the attack again, but I knew that sitting in one of those hospitals rooms, I had the help I needed to fight it. I had to be there because I was sick and because something was wrong, but being there meant also I was going to get better and I was going to be okay.
Over these last twenty years, the staff at NMCP became my family. They haven't just cared for me, but encouraged me through every trial and celebrated with me through every triumph, inside and outside of the hospital gate. It's not just that I wouldn't be alive, but I wouldn't be the person I am today without the literally hundreds of attendings, residents, interns, nurses, corpsmen, nursing students, lab techs, child life specialists and volunteers, administrative support, hospitality and food service teams and more that have been involved in my care there.
As a part of the community leadership team for the Junior League, I selflessly made a plug for a toy drive for NMCP months ago. I currently serve as the Chair of our Children's Initiatives Committee so my role is to connect our members to children-focused charities and organizations in need, so NMCP was a natural fit. But as a former patient, it held a special place in my heart. I still regularly talk with many of my doctors and nurses either through Facebook or when I'm at the hospital for an appointment or admission on the adult ward.
Understandably, I was thrilled when our Board approved my request and I got to start planning the toy collection. And while I knew it was happening in December, and I was transferring out of this hospital in January, I didn't actually put two and two together until last night. As I sat in the waiting room, I realized what a poetic and bittersweet moment it was for this experience to be one of my last inside those walls. Despite everything... the pain, fear and sadness.. despite every bad day, I get to close this chapter of my life by giving back to the place that gave me so much. I truly couldn't ask for a better way to say goodbye.
I know I will still be a hot mess on Wednesday, especially when I say farewell to my respiratory therapist, Barb, and my clinic coordinator, Ruthie, who have literally taken care of me since I was six years old. One of the double edge swords of being in military healthcare is that they have a very high turnover rate as staff gets new orders or deploys. It can cause some issues with continuity of care, but it also means that I got to meet and be cared for by an entirely new team of medical professionals every few years. Barb and Ruthie, however, work as civilians for the clinic and they have been with me since the very beginning. I honestly don't even remember going to a doctors appointment that they weren't a part of and I don't even know how I'll function without them moving forward.
If you've gotten this far, you might be wondering "why are you leaving NMCP if it's so important to you?!", which is a very valid question. The short answer is that I turn 26 year old in a few weeks. My dad is retired military, so I've been on his insurance benefits these past few years, but I now have to transition to my own since apparently being 26 means I'm a full fledge adult or something?! Who would've thought... Regardless, my new health insurance doesn't cover me to continue using the military hospital, so I'll be transitioning my care to the Adult CF Center at the University of North Carolina in Chapel Hill. There's more to the story and I'm actually really excited and eager to make this change, so I'll follow up with more details later! But for now, I'm going to cherish the memories I have, and probably go buy some new waterproof mascara cause there's no way I'm getting through Wednesday morning without it.
No comments:
Post a Comment