“Making your way in the world today takes everything you’ve got. Taking a break from all your worries, sure would help a lot. Wouldn’t you like to get away? Sometimes you want to go where everybody knows your name, and they’re always glad you came. You wanna be where you can see, our troubles are all the same. You wanna be where everybody knows your name.” Friends, if you don’t recognize this song, you have been deprived of one of life’s greatest treasures. Yes, the show Cheers. Growing up, Cheers was one of my favorite shows. It usually came on well past my bedtime, so I often had to sneak and watch it. Now, before you say anything, yes I know it is sad that my idea of “rebelling” was sneaking to stay up late and watch Cheers. I also watched Perry Mason and Momma’s Family. Remember, we covered my inability to snugly fit into the normal box in an earlier post. I’m different and I embrace it.
Anywho, while watching Cheers I always loved how everyone in the bar would look up from their drink and yell “NORM” every time Norm Peterson entered. I always thought that was the coolest thing. Who doesn’t like to be recognized and celebrated? The bar could be completely packed with people, but everyone recognized Norm. Norm’s entrance was always celebrated, regardless of how crowded the bar was. As a kid watching the show, I had no idea that an infusion center in my least favorite hospital would become my Cheers.
As I have previously shared, I was diagnosed with Crohn’s Disease in March 2011. After experiencing symptoms since age 7, I finally received a medical explanation. Immediately following my diagnosis, my GI started an aggressive treatment regime. She started me on steroids, vitamin D supplements, a restrictive diet, steroid suppositories, antispasmodics, and a daily medicine Lialda. Despite numerous hospitalizations and several rounds on increased prednisone, I was unable to achieve remission. I would feel great for a few days, then become violently sick and start losing weight again. Finally, after 10 months on 60 daily mg of prednisone, I agreed with my doctor’s recommendation to add a biologic to my treatment regime. I initially tried an oral chemo medicine named 6mp. After several hospitalizations on 6mp and countless office visits and debates with my GI, I agreed in May 2012 to try Remicade.
Remicade is a chemo medicine used to treat auto-immune conditions like Crohn’s and Rheumatoid Arthritis. Given that I have both conditions, my doctor and I agreed that Remicade was a win win. Every 6 weeks I happily report for my Remicade infusion at the infusion center in my least favorite hospital which usually takes 4 hrs. Every 6 weeks, I slowly pull open that familiar door, approach the receptionist desk, ask for my one stick wonder by name, and playfully say “I’ll supply the hydrated veins if you supply the graham crackers, sprite, and remicade”. The receptionist gives a hearty chuckle and responds “check, and yes your one stick wonder is here”. We both laugh and I then take my seat in the waiting room and wait to be called back for my infusion. I have gone for my Remicade infusion so many times, that it is almost impossible to count. But, I go so frequently that the infusion center staff and I have come to really know one another.
The interesting thing about having a chronic condition is that you build relationships in the most unlikely places. I know about the nurse that recently passed her state boards, the nurse in school studying to be an NP, and the other nurse that recently became a grandmother. But, the nurses know I am the patient that likes a bed rather than a recliner, a sprite instead of water, 4 packs of graham crackers instead of one, and the one stick wonder I’ll call Rita.
I know I can be hard on physicians, but believe me that is not my intent. While there are some terrible practitioners, there are some medical professionals that do get it right. I have had some amazing and caring physicians, nurses, techs, and everything else. I can say without question that I have encountered more amazing people in the medical profession than I have encountered terrible ones. So, please don’t think that all my interactions with medical professionals have been terrible…I have had lots of great interactions. The great medical professionals that stand out the most though, to me, are nurses. When I think of my hospital stays, the individuals with the greatest influence on whether the stay was amazing or terrible, were the nurses. The same holds true for procedures I’ve had to undergo, and my infusions.
I remember back in 2012 when I found out I was pregnant with my second daughter, I had only been on remicade 6 months. I was 2 days away from my next infusion when I saw the double lines on the pregnancy test that indicated I was pregnant. I became a nervous wreck immediately after seeing those double lines. I knew that I only had hours to decide whether I would continue my remicade treatments during my pregnancy or immediately stop the remicade. My focus immediately shifted away from my own health, and turned to researching what I needed to do to ensure I delivered a healthy baby. My husband and I had tried to conceive for two years, and during that time I heavily researched the safety of remicade during pregnancy for both mother and baby. I also had countless conversations with my doctors regarding their recommendations to continue remicade if I became pregnant. My doctors assured me that remicade was perfectly safe during pregnancy, and all my research suggested it was the wise choice…but my heart was so heavy the night before my first infusion while pregnant.
The night before that infusion I did not sleep one wink. When I arrived to the infusion center at my least favorite hospital, my face was completely wet with tears. An infusion nurse saw me crying in the waiting room and asked what was wrong. I explained that I was 7 weeks pregnant and very concerned about taking remicade while pregnant. She sat down next to me, explained that she had pregnant patients in for remicade all the time, but also that taking the remicade was less risky for both me and the baby, than refusing it and flaring while pregnant. As I continued to cry, she hugged me and said “I know this is scary, putting a chemo med in your body while pregnant has to be a horrifying experience. Research it and do what you are comfortable doing. Medically, I agree with your doctor that you and the baby need this, but you have to do what you are comfortable doing because stress is also not good for you or the baby.” The conversation lasted no more than 3 minutes, but the memory will stay with me a lifetime. The nurse that spoke with me as I second guessed my remicade decision was not my infusion nurse. In all honesty, I had never met that woman before in my entire life. Despite being a complete stranger to me, and having patients patiently waiting for her, the nurse took time to sit, comfort, and inform me. It seems like a small gesture, but in a world filled with people only concerned with themselves, this was big.
I absolutely adore the nursing staff at the infusion center in my least favorite hospital. Every nurse I have encountered has been absolutely amazing. My infusion nurse Rita (my one stick wonder), is absolutely amazing. One time during my remicade infusion, my blood pressure shot through the roof. My infusion nurse at the time, who I will call Jessica, noticed early on during my infusion that something was amiss. I repeatedly reassured her I was fine, and just exhausted from recently delivering my baby. Despite my reassurances, Jessica kept an extra special eye on me. Thank God she did. When I finished my infusion, Jessica removed my IV but asked me to sit for a few minutes to give myself time to feel a little better. Within minutes I drifted off to sleep, but was abruptly awakened by beeping monitors. Slightly dazed and a little confused, I heard a muffled voice yelling “we need a emergency response team to the infusion center”. I immediately thought “oh man, I hope that person is ok. Hopefully my roommate didn’t die”. I had no idea the emergency response team was activated for me.
Apparently, I passed out when I thought I had drifted off for a nap. During the short period of time that I slept, my blood pressure reached stroke level. I can’t recall the actual numbers, but both my systolic and diastolic had triple digits, and the first number for the systolic started with a 2. My infusion nurse at the time, Jessica, rushed over to me and explained what was happening. She spoke calmly and said “your pressure is alarmingly high and going higher by the minute. We need to get an IV line in to get you a medicine to bring it down immediately or you will have a stroke”. As she spoke sternly yet softly, tears rolled down my face. Confused, all I could say was “why, I feel ok. I just want to go home to my baby”. Jessica leaned in and said “if you listen to me, we can get you home healthy for your baby. But I need you to talk to me and do as I ask, please”. Crying at this point, I nodded and softly said “ok”. Jessica began asking me a series of questions “who is our president, what is your name, what is your new baby’s name, what is your husband’s name”. I answered each wrong, but oddly what I recall the most from her questioning was that she knew my baby’s name without hesitation.
After Jessica established that I could not answer her questions, she felt better about activating the emergency response team. They quickly arrived with paramedics in tow, along with a cardiologist and 6 medical students. The paramedics explained what Jessica had previously told me and asked for my consent to start an IV and administer a medicine called hydralazine. According to the paramedics, this medicine would immediately bring my blood pressure down and keep it there for 20 minutes to make me stable enough to transport to the Emergency Room. After 3 attempts, the paramedics could not get the IV in. Suddenly, Jessica yelled “call Rita on her cell, she just left and I know she can get an IV line in her…she is a hard stick”. A nurse from the nursing station immediately ran out of the infusion center and within 2 minutes ran back with Rita in tow. Rita quickly put sanitizer on her hands, grabbed a set of gloves and went to work. Amazingly, and thankfully, she got the IV in on her first attempt. Honestly, no one in the room could believe their eyes, but there was no time to celebrate. With tears in my eyes, I leaned forward and whispered “thank you”. Rita smiled and said “we gotta get you home to that beautiful baby”. Her words left me speechless.
Rita had never worked as my infusion nurse, but knew my story. She knew about my illnesses and my new baby. When my husband rushed into the infusion center to be by my side as I was being wheeled out, Jessica, my regular infusion nurse, quickly identified him and assured him that I was stable. She knew what he looked like based solely on numerous conversations about him as she prepped me for my remicade. See, that day so many years ago, in the infusion center at my least favorite hospital, I was Norm. People knew my name and story, even though our paths never crossed long enough to have an actual conversation. Fortunately for me, that knowledge helped save my life.