It’s been two years since I fell ill with a specific lung infection. Two years ago I didn’t realize my life was about to change forever. Two years ago I thought a course of IV antibiotics would do the trick. Just a month prior to April 2016 I was thriving, I had energy, I skated 4 days a week and did school, managed A’s and B’s, turned in assignments on time. My life was totally different from March 2016 to April 2016.
It’s so hard for me to not miss this life I had before burkholderia cepacia complex. I often find myself scrolling through pictures and memories of the life I still wish I had.
Sometimes I want to go back, other times I’m grateful for everything I have learned so far just from my struggle. I lost my ability to exercise, cepacia took skating from me. My grades dropped to a C average. I had missing assignments. I spent more time in my bed than anywhere else. I fell asleep on my desk all the time. I got early dismissals to go home and sleep. I had developed some major fatigue. This debilitating fatigue still follows and haunts my life to this day.
It’s hard to look back and see what used to be. I have to remind myself to keep looking ahead, this is my life now and I need to make the best of it. It blows my mind that I’ve been colonized with burkholderia cepacia complex for two years. My main strand is multivorans, although three times I have cultured burkholderia cenocepacia. I vividly remember my childhood appointments where everyone would tell me to beware of the “killer bacteria”(as they called it), burkholderia cepacia, the name that made my family afraid, the name that my doctors were thankful wasn’t a part of my life. The bacteria my mom had always been conscious of trying to keep me away from (even though, there’s no way to avoid it really.) I remember the day of the phone call from my doctor. I remember what I was wearing, where I was sitting, and what I was eating for lunch. He said I have Burkholderia Cepacia Multivorans. I cried later. I was worried because my whole life had been spent hearing “thank goodness we haven’t seen this on your cultures”. At this point, we were pretty sure we could eradicate it. Then came my longest hospital stay at the time. I was determined I would get rid of it after that 20 day Hospital stay. It kept coming back. Culture after culture, and here we are at 2 years and I still have it. It’s unfortunate, uncertain, frightening, and exhausting all in one. Cepacia can attack rapidly at any time under the name of CS, Cepacia Syndrome, where the infection enters the bloodstream and can be fatal within weeks.
Just two months ago, I heard the words “It’s not eradicable anymore, we are just going to do our best to manage your symptoms.” I’ve been in denial ever since I heard those words, no it can’t be here forever. “We can still get rid of it, right?”I would whine to my doctor and nurses. Followed with a disappointing and rather unsatisfactory answer for me, “It’s colonized. It’s pretty much not going to go away at this point Jennifer.”
That wasn’t good enough for me. I wanted to hear “we can try this combination of iv antibiotics as it’s promising to kill cepacia!” I wanted options, I wanted answers.
But I got none of that. Just a shrug of the shoulders and a dead end response.
I spent hours online reading about all the antibiotics on my sensitivities/resistances list in my chart. I read about success stories, and people who died from burkholderia cepacia. I dug around, I found a combination of antibiotics that’s been very effective. I read about bacteriophages. I read scientific scholarly articles.
Two years later. I am still digging and searching for answers. Praying for relief. Meanwhile my normal has become 4-5 weeks of IV antibiotics followed by a spurt of health and energy for 2-3 weeks, followed by a crash, which results in needing more IV antibiotics. My life is in a constant cycle of managing instead of eradicating now. This lifestyle takes a warrior mindset and an incredible ability to adapt.
It’s not easy, I won’t ever say it is. At only 19 years old, I’ve watched the thing I love most be taken away from me which is figure skating.
I can go back to ice skate, but it will never be the same. The way my body feels as my blades press into the ice and land a jump will always be accompanied by a feeling of chest heaviness, fatigue, and thoughts of needing breaks.
Burkholderia cepacia has changed my life. Some may say there isn’t anything good that has come from this lung infection. I disagree with that. Since B. Cepacia Multivorans and Cenocepacia was cultured in my lungs, I have built an incredible amount of strength that I would have never had. I am resilient. I am strong. I especially now, do not take anything for granted anymore. My whole mindset has changed because I have learned to expect the unexpected.
Since culturing burkholderia cepacia, the pain, fatigue, and worrying has been unexplainable. Through this incredibly hard time in my life, this is when I found God. I slowly started going to a youth group, and then started going to Sunday services. Before I knew it, I was experiencing such peace and tranquillity with God. For the first time in my life, I felt equipped for the battle. I felt like I wasn’t on my own. I then realized He really has equipped me for this battle. Personally, I feel like I’ve gained way more than I’ve lost these past two years.
It may seem crazy that I see this as a pivotal point in my walk with God, but I do. I see this as an uphill climb, with a few detours. But I truly do believe I am just going up. Up in strength, up in my fight, and up in my faith. I could not have made it to this point without God. He prepares, equips, and guides. I used to hear that all the time, but now I have an experience that I can testify it is the TRUTH.
Romans 8:18 says the pain you’ve been feeling cannot compare to the joy that is coming. And I believe that.
God may not fix the situation or hardship right away but He promised to never leave us. He never will. He will always be with us.
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Jennifer Nelson
Battling2Breathe 