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Working On The Front Lines With An Autoimmune Disease

  • 6 min read

About The Author: My name is Danielle. I live with an autoimmune disease and I am a respiratory therapist fighting on the front lines against COVID-19. If you are interested in following along with my story, you can find me on Instagram @_.the.invisible.girl._

 

Getting Diagnosed

The last year of my life has been a whirlwind. In December 2019, I had a liver biopsy that confirmed my physician's diagnosis of Primary Biliary Cholangitisan autoimmune disease that affects the liver. Essentially there is too much bile in the body to safely pass through the bile ducts, so the bile ducts become destroyed. The bile then backs up into the liver leading to scarring or fibrosis, then cirrhosis, and ultimately liver failure. Sometimes a liver transplant is required but because PBC is autoimmune, the immune system will eventually attack the new liver as well. I was diagnosed with beginning stages of liver fibrosis. At 31 years old, that was hard to hear. I fell into a deep depressionI cried all the time and didn’t sleep. It was a bad combination. But I was sent to a hepatologist and put on Ursodiol to treat it. Ursodiol helps to thin the bile and make it easier to pass through the bile ducts. My liver enzymes began to normalize but I was told by my doctor to expect needing a liver transplant in 15 to 20 years. I try to not dwell on that but just focus on keeping my liver enzymes low.

Fast forward to July of 2020 when I began to notice that I was still in severe amounts of daily pain despite being on furlough from my job. I was allowed to go on furlough because COVID-19 was taking over the hospital where I work at. There was nowhere "safe" for me to work. There was a lot unknown about COVID-19 at the time and my primary care physician did not feel comfortable with me working as a RT. During my furlough, I realized I was still in the same amount of pain as I was running around a hospital for 12 or 13 hours a day. So, I went to a rheumatologist and was diagnosed with Sjogren's Syndrome, which is an autoimmune disease that causes systemic inflammation throughout the body. For me, it causes severe joint pain, stiffness, dry mouth to the point of difficulty talking and swallowing, as well as dry and itchy eyes. I have beginning stages of arthritis due to the swelling caused by Sjogren’s. I was started on Hydroxychloroquine in the middle of August 2020 to help treat it. My numbers are slowly going down, but they are still well above what is considered normal. However, my pain level has been noticeably better.


Life As A Respiratory Therapist

Healthcare HeroNow that I have explained a little more about me, let me tell you about my life as a respiratory therapist. When I first went to school to be a respiratory therapist, I never imagined I would find myself working on the front lines during a respiratory pandemic. I have been a RT for just over 5 years now and I have never seen anything like what we have seen this year in 2020. Patients are sick, really really sick. They are dying — young and old. The virus does not discriminate. Seeing the damage has really affected my mental health. Patients are dying alone because families are not allowed in. So, I am doing my best to replace their family. I hold their hands after I withdraw them from the ventilator and help them pass on from this life. It has always just been a part of the job for me, but this year it's different. The isolation is overwhelming. We are working so hard and doing everything we can, but sometimes it is just not enough. That takes a toll.  

But what is scarier for me is that I am immunocompromised. I was very scared to come back to work and I am still scared. I feel like I live in a constant state of fear. "Will my PPE fail? Will this be the day I catch the virus?" A lot of the time I feel like there is not an IF I catch the virus but more of a WHEN I catch and of course I worry if I will be okay or not if I do. I am not on immunosuppressants, but my immune system is compromised. I have a chronically low white blood cell count, so when I am sick, it takes me longer to heal up than most people. It is also a lot easier for me to catch a bug than most people. My rheumatologist recommended some daily vitamins to take, but I always wonder if it will be enough to try to help protect me. I have developed a lot of anxiety and depression over these last few months taking care of patients with COVID-19. I have just recently been started on depression meds by my care team. My primary care physician is also sending me to therapy. It has all been a lot to cope with. This year is a lot. 2020 is too much and I know I am not the only one suffering through it. I hope that therapy helps and begins to provide me some sort of comfort through all of this.

 

Pushing Through The Pain

Being an RT is also really hard on my body. We are constantly pushing patients and ventilators around. We have to maneuver ourselves around in weird positions for either giving treatments or during a cardiac arrest. Working causes me to have flare ups a lot unfortunately. And I struggle with the idea of not being able to keep up with my coworkers. I also feel bad about having to call off because I cannot move or I'm in too much pain. I have been lucky so far that my coworkers are very understanding of my situation, but it still affects me mentally. My rheumatologist actually told me she doesn't think I should be a respiratory therapist because it is too physically demanding and too hard on my body. 12-hour shifts are hard with profound fatigue. It's a different kind of exhaustion than just being tired. It's like walking through mud mixed with brain fog.... you are just kind of going through the motions. This job is extremely hard on me, but I push through everyday.

As for PPE, I feel like I live in my personal protective equipment at work. My job is to aerosolize the virus into teeny tiny particles which makes it considered "airborne." Breathing treatments, ventilators, BiPAPs, and high oxygen cause the virus to become airborne. It is really easy to contract the virus during inhalation when the particle size is so small. For all patients, I wear a p-100 respirator, a face shield, and a pair of gloves. I also tend to wear a scrub cap a lot. If I have COVID-19 patients, I wear the respirator, face shield, a gown, scrub cap, and gloves. If I am lucky, I will also have a pair of scrub booties to wear on my shoes. I am constantly worried about bringing the virus home and infecting my family. I disinfect everything. I also change my shoes. As soon as I am home, scrubs go in the laundry and I take a shower. I try to do everything I can to prevent myself from being in a risky situation. Respiratory goes to all areas of the hospital, including the emergency room. You never know what someone may or may not have-patients, visitors, and co-workers. So, I always try to protect myself as much as I can. A lot of people call me a "hero." I don't feel like one though. I'm just a young woman with an autoimmune disease trying her best to get through 2020

 

We want to give a big shoutout to all of the healthcare heroes that have been fighting on the front lines of the COVID-19 pandemic. Thank you for all of the incredible work you do! 

If you are looking for more resources, support, and community stories surrounding COVID-19, check out our other blogs: 

Want to share your story? Let us know in the comments or email us at wecare@careandwear.com. We love hearing from our community members!

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