May is rapidly coming to a close and man has it been a month. As I’ve mentioned May is Ehlers- Danlos Awareness month. I started out this month with high hopes of creating content in order to bring awareness to this rarely talked about disease. Little did I know that EDS would be creating its own “content” in my own life. I have been a walking billboard for Ehlers- Danlos Syndrome this past month.
I’m reminded of a fellow EDS warrior who lived her life bringing awareness to our disease. Jaquie Beckwith changed my life in many ways and I think about her legacy often. When people ask me if EDS can kill me the answer is complicated. The subtype of the disease I fight will not inherently kill me, but the disease puts me in a lot of situations that are life-threatening. For Jaquie, it was complications from her feeding tube, which was necessary due to her EDS. Anytime anyone goes under anesthesia, is hospitalized, or given a life-saving device, such as a feeding tube or port, the risk of complications is out there. For us who have these things happen to us often, our risk of complications is higher than most. It was this time last year that Jaquie went home to be with the Lord. It was this past month that I faced life-threatening complications.
At the beginning of this month, my port-a-cath became infected. With the way, my port was looking my cardiologist immediately scheduled for my port to be removed and placed me on oral antibiotics. I showed up to my procedure to have my port removed and was all prepped and ready when the interventional radiologist decided that my port didn’t need to be removed.
For 2 weeks I continued my oral antibiotics and then Monday the 11th the interventional radiologist decided that the infection was cleared up and my port could now be used. That afternoon they used my port as instructed.
The next morning I woke up to a laundry list of extreme symptoms and most importantly a fever of 102 degrees. My cardiologist sent me directly to the emergency room.
As my symptoms of a bloodstream infection and/or COVID-19 were overlapping I was placed in isolation and treated as though I had the coronavirus. I was placed in the unit with COVID patients, astronaut looking nurses, disposable everything (even stethoscopes and thermometers), robot nurses and doctors, and fear in the faces of everyone.
My temperature spiked that night again, next door the respiratory team did their best to keep my neighbor breathing. My test for COVID would come back negative the next day, but my doctor told me he wished I had COVID, instead of what they believed I had.
In my new unit, COVID precautions were still high and the fear of the virus that seems to know no boundaries was still as high as ever. My nurses cried in fear and in shock of what they had witnessed. Family and friends flooded the parking lot outside our windows to possibly see a shadow of the ones they loved. Maria, the cleaning lady was overwhelmed by the task in her hands. My nurse who was 7 months pregnant wore 4 masks to try and protect herself and her child. The nurse’s ears were rubbed raw and their faces were blistered. This was life in the hospital during COVID-19.
I received antibiotics every 8 hours in order to combat the infection. The blood cultures took 5 days to grow results, but in the meantime, as my other bloodwork showed frightening signs of infection it was decided that my port needed to be removed. My port was surgically removed on Friday the 15th.
Over that weekend my blood cultures would grow staph infection, meaning the infection that once was contained to the port device itself had been spread to my bloodstream and my body was in sepsis. The good news was that they knew what they were fighting. They changed my antibiotics to specifically target the staph infection and after a few days, I was allowed to come home.
I write this as I’m getting an outpatient infusion. I’ve been out of the hospital for 10 days now and have made a comfy spot in this infusion chair 5 out of the last 10 days. I’m receiving a “super-duper” antibiotic once a week and IV fluids three times a week.
Wednesday, June 3rd I will see the infectious disease doctor in hopes to get cleared to schedule surgery for my new port placement.
IV antibiotics are no joke, my dad describes it as if they are letting a nuclear bomb off inside of me. My arms are bruised up and down from vein after vein blowing from the harsh antibiotics. My stomach feels like there is a war being fought inside me. Headaches and extreme fatigue are all par for the course. Hopefully, the nuclear bomb of antibiotics will be able to clear up the infection and set me on track for the next part of my journey.
One thing is for sure about May 2020 and that is the fact that I will never forget this month. My nightmares are filled with the painful things of this past month and my daydreams are filled with the overwhelming love that I’ve felt this past month.
I will never forget the reminder that isolation does not have to mean separation. In fact, May 2020 might’ve brought me physical isolation, but in every other way, May 2020 found me surrounded by love and connected to everything that matters.
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