Over the course of our careers, nurses, nurse practitioners, and other healthcare providers come into contact with hundreds and perhaps thousands of patients. While a big part of our job is providing medical-related education to these patients, we often learn just as much about life from them. Many of our interactions teach us about courage and bravery and stamina, leaving us with fond memories to look back on.
I have many such interactions stored in my memory bank. PR is one of my most cherished. She’s a young woman who never fails to amaze me with her zest for life.
Let me share part of her story with you.
We’ll start in mid-2016, approximately 1 month prior to her wedding. PR was 26 years old at the time and came into our office as usual accompanied by her mother, who had been her main support throughout her decadelong battle with rheumatoid arthritis (RA). PR was in the throes of a terrible disease flare, and an especially poorly timed one with her upcoming nuptials.
PR was being treated with rituximab at the time and was due for her next infusion in a few days, but she asked me if I thought it could wait until after her wedding and honeymoon. She was afraid that she might have an adverse reaction to the infusion that would interfere with her plans. PR put on a brave face. She was willing to accept the consequences of her disease flare so that she didn’t ruin her wedding day not only for herself but for her future husband, his parents, and all of the other friends and family who were coming to celebrate.
Instead of her rituximab infusion, PR asked for a short court of steroids. It took a lot of pleading from PR’s mom, her attending rheumatologist, and myself to convince her that this wasn’t a good idea and that she was going to be much better off going through with the infusion so she could fully enjoy this special time in her life. We assured her that we would vigilantly monitor for any potential adverse effects to the medication.
This wasn’t the first time I had had some really tough conversations with PR. We first met when she was 18 years old. She came into our clinic with pain and swelling in multiple joints. Lab tests revealed positive anti-nuclear antibodies, anti-citric citrullinated proteins (anti-CCP) levels, and rheumatoid factor (RF). We know that patients with both a positive RF and anti-CCP typically have a more aggressive course of RA and can be difficult to treat, so unfortunately PR had two strikes working against her right from the start.1
“Nevertheless, PR never complained and accepted that her disease was a part of her life. Importantly, her disease never became her life, and she always came into our office with a smile.”
We started PR on a course of NSAIDs, prednisone, and hydroxychloroquine. We discussed the possibility of including methotrexate, but since PR was heading off to college in a few months, there was concern about possible drinking. An unplanned pregnancy was also a concern. Fortunately, instead of having to gently bring these issues up myself, PR’s mother did it for me. She had done a lot of reading to educate herself about treatments for RA and knew the risks of methotrexate before the topic ever came up.
Over the years, I saw PR on a semi-regular basis. There was a brief period where she and her mother sought out a second opinion from another local rheumatologist during one of PR’s disease flares, but they came back to our practice a few months later. We have often had to make adjustments to PR’s treatment regimen due to ongoing disease. Of course, as a young woman, life didn’t stop for PR, as she attended college full time while working 10-15 hours a week at a local grocery store. Nevertheless, PR never complained and accepted that her disease was a part of her life. Importantly, her disease never became her life, and she always came into our office with a smile. Because of her pleasant nature, we eventually created a strong bond not only as patient and provider, but as friends. We often share stories about our families and important milestones in our life.
It’s been a hard slog for PR. She’s been through the gamut of RA medications, ranging from infliximab to abatacept to tofacitinib. She developed rheumatoid nodules, which would be a horrifying development for many young women. Not for PR. She took it in stride.
After much trial and error, we finally hit upon a successful regimen approximately 4 years ago centered around rituximab that finally got PR’s disease under control. She was been able to finish college, accept a corporate-level job at the grocery chain she worked at during college, and had a beautiful wedding.
Her latest challenge involved planning for her first pregnancy. It was an exciting time and another important milestone in PR’s life, but always a situation that we as providers have to manage carefully. I worked with PR to time her final rituximab infusion prior to her trying to conceive and then transitioned her to hydroxychloroquine and prednisone.
Six months later, it was another good news/bad news scenario. PR was pregnant (good news!) but was again in an RA flare (bad news!). She came in and told me she was unable to dress herself or comb her own hair in the morning. It turns out that her Ob/Gyn had taken her off of prednisone due to a fear of cleft palate that is sometimes, but quite rarely, associated with steroid use during pregnancy.2
Based on her level of pain and inflammation, we referred PR to a high-risk Ob/Gyn as there was little chance she would be able to deliver a healthy baby in her current condition. Fortunately, her new provider agreed to let PR resume use of low-dose prednisone, her joint symptoms resolved, and she delivered a healthy baby girl.
Alas, there was more bad news on the horizon. Two years following the birth of her daughter, PR was diagnosed with cervical cancer, requiring a total hysterectomy. This would have devastated some people, but as with everything else she’s been through, PR sees this as just one more of life’s challenges. Her optimism never seeks to amaze me. Instead of a “woe is me” attitude, she always says, “Look at all that I’m lucky to have. My family and my healthcare team do all they can to support me.”
In the healthcare world, we too often look for those unusual cases, those rare diagnoses or treatment regimens that we feel the need to write about or present at conference. And yet it is patients like PR who take up most of our time. These are the real-life stories of perseverance and overcoming obstacles that inspire us to keep going and keep learning.
During the Covid-19 pandemic, we’ve heard a lot about the extra layer of challenges our families and patients are facing. I’ve been inspired over and over with the stories and love and perseverance I’m hearing from my patients during these difficult and challenging times. Our patients are far more than their diseases, and it’s important for us to never forget about the person behind the diagnosis. Not only can we help them live a better life, but they can do the same for us.
References:
1. Mjaavatten MD, van der Heijde D, Uhlig T, et al. The likelihood of persistent arthritis increases with the level of anti-citrullinated peptide antibody and immunoglobulin M rheumatoid factor: a longitudinal study of 376 patients with very early undifferentiated arthritis. Arthritis Res Ther. 2010;12(3):R76.
2. Bandoli G, Palmsten K, Forbess Smith CJ, Chambers CD. A review of systemic corticosteroid use in pregnancy and the risk of select pregnancy and birth outcomes. Rheum Dis Clin North Am. 2017;43(3):489-502.
AUTHOR PROFILE: Linda Grinnell Merrick, NP-BC is a board-certified nurse practitioner at the University of Rochester Medical Center in Rochester, New York.
Earn 2.75 hours of continuing nursing contact hours, including 2.0 pharmacotherapeutic contact hours, by completing this course: Rheumatology Nurse Practice Course: Doing the Most for Our Patients with Rheumatoid Arthritis