Living with Lupus in Medical School
Stacey Jaimes-Herrera is a second year medical student at Loyola University Stritch School of Medicine. The following is a message she wrote to her class about her experience as a patient with lupus:
Dear Class of 2020,
I want to share my story with you because my experience has taught me a lot about patient care and I think maybe it can bring you a bit of motivation as you prepare for step and rotations. By this point I am sure you are feeling burned out and the pressure to do well on step is real. Let me tell you a little bit about what is going on with me to reinforce that what you are doing is for a great purpose.
Only a handful of you know this, I was originally part of the class of 2019. After orientation with the class of 2019, I experienced fevers and chills that would not resolve. I went to the ER and was diagnosed with Francisella Tularensis. I do not hunt and did not mow over a dead rabbit. I have lupus and I am immunocompromised. I was diagnosed 10 years ago at the age of 17. I have a history of systemic lupus erythematous (SLE), lupus nephritis, shingles, cytomegalovirus infection, and aseptic meningitis. I have been treated with plaquenil, methotrexate, cyclophosphamide, prednisone, and myfortic. Receiving chemo and facing the possibility dialysis at the age of 19 seems unimaginable, but I experienced it. I wore a wig, developed moonfacies, gained tons of weight, and was told I may not be able to conceive in the future. Thankfully the chemo placed the lupus nephritis in remission and I never had to go on dialysis. Still, I could easily be our capstone case.
The past two years have been very tough for me. I am always tired and experiencing some level of pain. I am always recovering from either an infection or flare. I am usually behind with lecture material and most of my exams have been delayed. Nevertheless, I have done very well academically and I can genuinely say that I feel privileged every day. Although I do not know many of your personally, we are connected by the desire to bring healing to others and we strive side-by-side for a purpose that is beyond our self interests. Medical school is the best, most difficult thing I have had to do thus far (aside from chemo) and I feel truly blessed to be sharing this experience with you.
I have been hospitalized for the past two weeks for acute transverse myelitis and will be here for quite a bit longer. The first day of my hospital admission I experienced allodynia and lost my ability to move my legs. An MRI showed activity in more than half of my spinal cord. My case is complex because my presentation indicates infection or lupus flare-which, as you know, are treated in opposite ways. Lumbar puncture results came back with a very high WBC count and infection was suspected. I was blasted with all the big gun antibiotics, antifungals, and antivirals. Nothing ever grew on the cultures or came back positive from PCR tests, so infection went down on the differential and physicians are now treating me for a lupus flare, which means high dose steroids, plasmapheresis, IVIG, and rituximab.
How can I begin to describe my experience? It is terrifying to have absolutely no control of what goes on with your body. Having lupus means you do not what is coming or when it is coming, and it could be absolutely anything. It is difficult to determine when a fever will resolve or turn into something horrid. My baseline is never normal and if I were to seek medical attention anytime I feel slightly off I would never get anything done. As a patient I have felt helpless and vulnerable. As a medical student it is both helpful and stressful to understand the diagnosis, treatment, and prognosis.
I am telling you my story because I wanted to share the following lesson with you. During all of my difficult times, it was not the physicians who had all the answers that brought me comfort. The physicians who really comforted me and brought me healing were those who acknowledged my family in the room and who placed a hand on mine and said “we will be with you and get you through this.” A patient care technician recently came into my room with a bucket of soap and warm water and washed my feet and then used warm wipes to wash the rest of my body. She addressed an area of self-consciousness I felt when a room full of physicians examined me half naked, their faces in awe at what was probably the most interesting case on the floor. The patient care technician brought me healing without anyone’s request and without any drugs. I am always amazed at the nurses who are like the soldiers in the trenches, they have treated me with such kindness and love that my heart is simply overwhelmed with gratitude. My eyes fill with tears as I remember all of the innumerable acts of kindness performed by my healthcare team, family, and friends. Their words of encouragement have motivated to get out of bed despite the pain and work with my physical and occupational therapists to improve my mobility.
I am happy to tell you I am making great progress. I am still experiencing some problems with balance when I walk, but the physicians believe I will regain my normal function with time. My treatment is ongoing and I am not sure what this means as far as a timeline for med school, but I can reassure you I will be back on campus as soon as I am able. I wish you the best of luck as you study for step and prepare for rotations. Just remember that how well you treat a patient is not just determined by your knowledge base or your step score. I hope that you will continue to feed the desire that motivated you to pursue a career in medicine and that you will care for yourself first so that you may care for others. Be kind to each other. Everyone has a unique struggle even though it may not seem apparent. Reach out to the classmate who missed a small group or lecture-the simple fact you noticed their absence will bring that person comfort.
I will leave you with this quote from Dr. Mohrmann’s “Attending Children”-
“If doctors are attentive and open to hearing the needs of patients and their families in that situation where ‘nothing more can be done’ they must eventually recognize there is never nothing to do. There is always the service of being present, of accompanying the patient and family through what remains -as guide, companion, assistant, or witness. This too is the work of attending, part of the ministry of service to the sick that is as much a definition of doctoring as is the knowledge, the technical dexterity, the professional demeanor, or the listening ear.”