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Turning #LymeintoLemonAid Thanks to My PICC Line
A
P A T I E N T / C O N S U M E R
P E R S P E C T I V E
Turning #LymeintoLemonAid Thanks to My PICC Line by Emily Levy
I
was told that I was a moody teenage girl in need of antidepressants and psychotherapy, that I didn’t stretch enough before and after sports so I should see a physical therapist, that I was tired because school started so early, that it was all in my head, and that I was just a clumsy person who should stop complaining. Seven years later, I was diagnosed with chronic neurologic Lyme disease and coinfections of Babesia and Bartonella. Background During the seventh grade I had a strange hemangioma-like rash on my inner right leg. My pediatrician told me it was eczema. But this didn’t itch or look like eczema. With a month left to go in the seventh grade, I became extremely ill. I had a high fever for more than a week, I couldn’t walk, I was dizzy, my liver was swollen, and I was getting physically sick. I lost 20 lb in a month and I could not finish the seventh grade. The pediatrician I had consulted the rash for told my family I had the worst case of mono that he had ever seen . . . although I tested negative for the virus. Perhaps it was leukemia? I spent the summer months mostly in bed or in a beach chair unable to walk or make it through the day without a nap. From eighth grade until my freshman year at Babson College I had other strange symptoms. I was tired all the time, I had extreme hip pain despite no longer playing sports, and I was becoming increasingly uncoordinated. My words started to slur and I had twitching on the right side of my face. By the time I got to college, I could hardly pay attention in class and light and sound were causing me pain. I also had depression and was hospitalized twice for random collapses. I was misdiagnosed by more than 10 doctors and sent to psychotherapy. Throughout this time, I was crying out that something was wrong with me but no one would listen.
A Diagnosis Finally, after my freshman year at Babson College, I was diagnosed with chronic neurologic Lyme disease. After traditional antibiotics, such as doxycycline, tetracycline, azithromycin, atovaquone, minocycline, and others, did not make me any
better, a peripherally inserted central catheter (PICC) was placed in my left arm for daily infusions of intravenous (IV) antibiotics right after Christmas. Most people take time off from work or school to focus on their health, but I decided to stay in school for my mental health. I knew it would be just as damaging for me to stay on the couch and watch my friends have fun via Facebook and Instagram. For the second semester of my sophomore year I went back to college with a cut sock on my arm and a minifridge full of syringes, flagyl, rocephin, and alcohol pads. I went from being a social butterfly involved in too many clubs and working too many hours at my after-school job to being a hermit. I planned my days around my naps and IV treatments. I was no longer my confident, outgoing self. With a PICC, I felt like “that sick girl.” My rocephin treatment took place during my 8 AM finance class and the cute hockey player sitting next to me looked at me as if I was a walking disease. I could no longer hide that I was sick with some makeup and a fake smile.
2016
j
Vol 21 No 1
j
JAVA
j
23
Sophomore year was sobering. I learned who my real friends were, that my boyfriend really loved me, and that my family cared for me more than I realized. It was a very challenging time for me that included going home to Rhode Island once a week to see my PICC nurse for her to change my dressing. I am so thankful for her. She looked at me like a person. In addition, she had used a PICC for Lyme disease herself and was able to help me though difficult times. I could call her at any timedday or nightdwith the littlest questions. Although I was not yet rid of Lyme disease and the coinfections, I decided to have the PICC removed at the end of May 2014. I was accepted into an internship program in Haifa, Israel, with almost all expenses paid and I could not pass up this dream opportunity to intern for a high-tech startup abroad. I couldn’t bring my nurse to Haifa, so the PICC had to come out. I packed 1 suitcase with 3 months’ worth of pills, supplements, and vitamins, and 1 suitcase with clothing. Today I still have chronic neurologic Lyme disease and coinfections, but I am about 60% better. I take shorter naps, I have less joint pain, my words come out clearer, and I am doing better in school. I am now an advocate for patients with Lyme disease and I like to share my personal story because I don’t want other
24
j
JAVA
j
Vol 21 No 1
j
people to go through what I have been though. I have also started my own company, PICCPerfect. We create stylish and functional medical accessories: Our first product is the PICCPerfect PICC Line Cover. Our covers are a double-fold design that is stylish, antimicrobial-moisture wicking, 4-way stretch, and machine washable. Treatments take place through the hole in the lining so the insertion site is never exposed. The covers are reinforced with medical-grade elastic to stay in place. I will be graduating from Babson in May, at which point I will be pursuing my business venture full-time. Lyme is the worst best thing that ever happened to me. It made me realize what and who is important in my life and it gave me purpose. It made me strong enough to launch my own business. It makes my day when a PICC patient sends us pictures of our covers in use! Emily Levy is a former peripherally inserted central catheter patient and is the chief executive officer and cofounder of PICCPerfect.
2016
http://dx.doi.org/10.1016/j.java.2015.12.002 Copyright Ó 2016, ASSOCIATION FOR VASCULAR ACCESS. Published by Elsevier Inc. All rights reserved.
P A T I E N T / C O N S U M E R
P E R S P E C T I V E
Turning #LymeintoLemonAid Thanks to My PICC Line by Emily Levy
I
was told that I was a moody teenage girl in need of antidepressants and psychotherapy, that I didn’t stretch enough before and after sports so I should see a physical therapist, that I was tired because school started so early, that it was all in my head, and that I was just a clumsy person who should stop complaining. Seven years later, I was diagnosed with chronic neurologic Lyme disease and coinfections of Babesia and Bartonella. Background During the seventh grade I had a strange hemangioma-like rash on my inner right leg. My pediatrician told me it was eczema. But this didn’t itch or look like eczema. With a month left to go in the seventh grade, I became extremely ill. I had a high fever for more than a week, I couldn’t walk, I was dizzy, my liver was swollen, and I was getting physically sick. I lost 20 lb in a month and I could not finish the seventh grade. The pediatrician I had consulted the rash for told my family I had the worst case of mono that he had ever seen . . . although I tested negative for the virus. Perhaps it was leukemia? I spent the summer months mostly in bed or in a beach chair unable to walk or make it through the day without a nap. From eighth grade until my freshman year at Babson College I had other strange symptoms. I was tired all the time, I had extreme hip pain despite no longer playing sports, and I was becoming increasingly uncoordinated. My words started to slur and I had twitching on the right side of my face. By the time I got to college, I could hardly pay attention in class and light and sound were causing me pain. I also had depression and was hospitalized twice for random collapses. I was misdiagnosed by more than 10 doctors and sent to psychotherapy. Throughout this time, I was crying out that something was wrong with me but no one would listen.
A Diagnosis Finally, after my freshman year at Babson College, I was diagnosed with chronic neurologic Lyme disease. After traditional antibiotics, such as doxycycline, tetracycline, azithromycin, atovaquone, minocycline, and others, did not make me any
better, a peripherally inserted central catheter (PICC) was placed in my left arm for daily infusions of intravenous (IV) antibiotics right after Christmas. Most people take time off from work or school to focus on their health, but I decided to stay in school for my mental health. I knew it would be just as damaging for me to stay on the couch and watch my friends have fun via Facebook and Instagram. For the second semester of my sophomore year I went back to college with a cut sock on my arm and a minifridge full of syringes, flagyl, rocephin, and alcohol pads. I went from being a social butterfly involved in too many clubs and working too many hours at my after-school job to being a hermit. I planned my days around my naps and IV treatments. I was no longer my confident, outgoing self. With a PICC, I felt like “that sick girl.” My rocephin treatment took place during my 8 AM finance class and the cute hockey player sitting next to me looked at me as if I was a walking disease. I could no longer hide that I was sick with some makeup and a fake smile.
2016
j
Vol 21 No 1
j
JAVA
j
23
Sophomore year was sobering. I learned who my real friends were, that my boyfriend really loved me, and that my family cared for me more than I realized. It was a very challenging time for me that included going home to Rhode Island once a week to see my PICC nurse for her to change my dressing. I am so thankful for her. She looked at me like a person. In addition, she had used a PICC for Lyme disease herself and was able to help me though difficult times. I could call her at any timedday or nightdwith the littlest questions. Although I was not yet rid of Lyme disease and the coinfections, I decided to have the PICC removed at the end of May 2014. I was accepted into an internship program in Haifa, Israel, with almost all expenses paid and I could not pass up this dream opportunity to intern for a high-tech startup abroad. I couldn’t bring my nurse to Haifa, so the PICC had to come out. I packed 1 suitcase with 3 months’ worth of pills, supplements, and vitamins, and 1 suitcase with clothing. Today I still have chronic neurologic Lyme disease and coinfections, but I am about 60% better. I take shorter naps, I have less joint pain, my words come out clearer, and I am doing better in school. I am now an advocate for patients with Lyme disease and I like to share my personal story because I don’t want other
24
j
JAVA
j
Vol 21 No 1
j
people to go through what I have been though. I have also started my own company, PICCPerfect. We create stylish and functional medical accessories: Our first product is the PICCPerfect PICC Line Cover. Our covers are a double-fold design that is stylish, antimicrobial-moisture wicking, 4-way stretch, and machine washable. Treatments take place through the hole in the lining so the insertion site is never exposed. The covers are reinforced with medical-grade elastic to stay in place. I will be graduating from Babson in May, at which point I will be pursuing my business venture full-time. Lyme is the worst best thing that ever happened to me. It made me realize what and who is important in my life and it gave me purpose. It made me strong enough to launch my own business. It makes my day when a PICC patient sends us pictures of our covers in use! Emily Levy is a former peripherally inserted central catheter patient and is the chief executive officer and cofounder of PICCPerfect.
2016
http://dx.doi.org/10.1016/j.java.2015.12.002 Copyright Ó 2016, ASSOCIATION FOR VASCULAR ACCESS. Published by Elsevier Inc. All rights reserved.