The Trials and Tribulations of COVID-19 and Rare Disease

Shawna Barnes avatar

by Shawna Barnes |

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Last month, I began experiencing symptoms of COVID-19. My husband had tested positive two days before that, but we thought I might get lucky because I was fully vaccinated and boosted. Alas, it was not to be, as I tested positive shortly afterward.

I am a disabled veteran, so when I first started coughing, I immediately called my local Veterans Affairs clinic and spoke to the triage nurse. I have myasthenia gravis (MG) and other chronic conditions, so my care team and I knew I needed to be proactive in implementing my care plan in response to COVID-19.

I suffer from a combination of weakness in my diaphragm and the muscles involved in accessory breathing, as well as eyelid drooping, generalized weakness, and bulbar symptoms, including difficulty chewing, swallowing, and speaking. When you have a chronic illness, particularly a rare one like MG, the risk of COVID-19 is high, both in terms of the potential for disease progression and the inability to quickly recover from such a hostile viral takeover.

My ER experience

We decided I should go to the emergency room, where I tested positive for COVID-19. But the ER nurse told me to manage the symptoms as best I could at home. I expressed my concern that COVID-19 symptoms could exacerbate my MG symptoms, and to prepare for that eventuality, I requested specific medications.

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With Chronic Illness, the Silence of Others Is Deafening

COVID-19 is a serious respiratory illness, so the members of my care team and I were concerned it might affect my breathing and bulbar symptoms, which could lead to a myasthenic crisis. Unfortunately, I wasn’t able to obtain the medications I requested and was advised to discuss it with my primary care provider.

After leaving the ER, I messaged my primary care provider, who ordered cough suppression meds (Tessalon Perles works well for me), Mucinex, an antibiotic, and more prednisone. She placed a rush order at a local pharmacy.

In the ER, I felt frustrated because it didn’t seem that the threat of MG and COVID-19 was sufficiently taken into consideration. I felt like I was being treated the same as someone who didn’t have another serious disease, apart from COVID-19.

I did, however, hope to avoid being admitted as an inpatient, because I know how overwhelmed healthcare workers currently are in the U.S., due to the pandemic.

In these types of situations, being a strong advocate for my well-being is critical, along with having a supportive care team. It’s important to remember that the healthcare providers we don’t see every day may not be familiar with MG. Some may not understand the importance of the specific things we ask for. So, we need to be able to calmly articulate them. And we should have plans B and C in mind if plan A doesn’t materialize.

The COVID-19 effect

COVID-19 has exacerbated symptoms I already struggle to manage. Since testing positive, I’ve had a cough that alternates from dry to productive. Sinus pressure, especially in my ears, has been most noticeable when my heart rate is above 80 beats per minute.

I haven’t had a fever, which I suspect is because of the high-dose prednisone I take to manage my MG. I’m experiencing immense fatigue and an increase in general weakness. My breathing requires constant monitoring. A couple days, I wrestled with the idea of returning to the hospital because my breathing was compromised and I was incredibly weak.

As of this writing, I am on day seven of having COVID-19, and it’s the first day I haven’t had to use my BiPAP machine during the day. My bulbar symptoms have occasionally come out to play, so I’ve slightly altered my diet in response. I avoid foods that require lots of chewing, I pay attention when I drink something to avoid aspiration, and I avoid talking more than necessary.

Being prepared

Having a chronic illness has allowed me to acquire all of the necessary equipment to weather this storm at home and avoid being admitting to the hospital. I have a hospital bed because I can’t breathe while lying flat. I have a BiPAP machine to provide breathing support. I have a wonderful care team that trusts me to adjust my meds as needed to maintain my well-being.

My neurologist increased my prednisone dosage to help my breathing. My pulmonologist encouraged me to adjust my BiPAP settings to a higher pressure with an extended time interval for breathing support, and advised me to more consistently use an inhaler to keep my airways open and cough up phlegm. My primary care provider ordered the meds I needed to manage COVID-19 symptoms.

I strive to find the silver lining in every situation, and if nothing else, having MG has provided me the tools over the years to keep me out of the hospital as much as possible during a pandemic.


Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.

Comments

Douglas F Young avatar

Douglas F Young

My support team at the infusion center, along with my personal physician, have told me that my first treatment against covid, given my age and my MG, would be an immediate monoclonal antibody infusion. Our local emergency room has a supplemental exterior facility to provide infusion services. It doesn't seem that your emergency room was well prepared for an immunosuppressed covid patient.

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Shawna Barnes avatar

Shawna Barnes

Hey Douglas! Plan A for my care plan included getting the monoclonal antibodies but my local VA and other local hospitals were all out of it. That's why I mentioned how important it was to have a plan B, C, and then sometimes we still need plans D, E, F...Z. ha

It sounds like you have a good care team as well!

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Craig avatar

Craig

Good for you for being your own advocate, and for having the supplies you need at home to maintain your care for a period of time! The rules, policies, and provider experience level at different facilities can create unexpected bumps and it sounds like you were so proactive in being ready that you have weathered this storm pretty well. I hope you and your husband are feeling much better!

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2021 Myasthenia Gravis Survey Results

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Myasthenia Gravis News conducted a survey from Feb. 11-March 28 to gain greater insight into the characteristics of the MG community and disease management. Results of the survey have now been published. Click on the image to view the infographic, and click here to read the story.