The “What Ifs” That Stay With Us | Rheumatoid Arthritis

Sometimes, we encounter a patient in our practice who touches our life and our soul, and never leaves our heart. One such patient of mine was Michael.

Michael fit the profile of our usual stoic patient with rheumatoid arthritis (RA). He was a hard-working carpenter from a family line of carpenters. He had worked hard all his life in the family business. He was a jovial patient who rarely complained and was passionate about his family.

In 1999, at the age of 43, Michael started having hand and wrist pain that limited his ability to swing his hammer. That same year, he had his right wrist fused due to damage in that wrist. Following the surgery, he was initially sent to our practice for a full workup.

After our examination, we diagnosed Michael with seronegative RA. His disease eventually progressed to the point where we had him on a regimen of methotrexate, leflunomide, hydroxychloroquine, and adalimumab. He was also taking 10-15 mg of prednisone daily to be able to continuing working and support his family.

Unfortunately, we were never able to get Michael’s disease into remission. There were several times he came in for checkups and told us that the adalimumab worked great for the first few days before all of his symptoms returned.

Michael’s therapy was also frequently interrupted by infections and surgeries (dual shoulder replacements along with knee and hand surgeries). We discontinued his adalimumab temporarily in 2006 when Michael came down with pneumonia and again in September 2008 when he was hospitalized with a shingles infection that affected his vision.

Michael’s health history also included removal of a testicular mass, hernia repair, bilateral knee arthroscopies, and right

Achilles tendon repair. After a 2008 shoulder surgery, Michael developed 3 blood clots in his legs and was put on warfarin for a year.

Like many of our patients with RA, Michael had a medical history that included hypertension. However, his condition was well controlled on bisoprolol fumarate and hydrochlorothiazide, and he had no history of hyperlipidemia or family history of early cardiac death. Consequently, the risk of a cardiovascular (CV) event was not high on our list of concerns.

When we saw Michael in early 2009, his disease was still somewhat of a roller coaster, with frequent flares continuing to trouble him. He was just getting back on his RA medications after his most recent shoulder repair. The frustration of years of ups and downs were evident – while Michael rarely complained, the wear and tear of a decade of surgeries and medication modifications were evident just by looking at him.

A few months after this visit, I received a phone call from Michael’s brother-in-law. In January 2010, at the age of 54, Michael died in the hospital from complications related to a heart attack.

The story was relayed to me as follows:

After years of joint pain, surgeries and fatigue related to his RA, Michael kissed his wife, took off his oxygen, and said that he was tired of fighting.

Michael was in the hospital visiting his wife, who was having knee replacement surgery. While in the waiting area, Michael suddenly developed a severe headache and intense mid-back pain. As it became more intense, he decided to drive home to take pain medication and lie down. An hour or so later, Michael appeared confused and disoriented, which prompted his mother to call an ambulance. He was admitted to the hospital with an initial diagnosis of encephalopathy due to his immunomodulating medications, headache, and general confusion.

After a normal spinal tap and a resolution of his primary symptoms, Michael was transferred to the telemetry floor, where they found a third-degree atrioventricular block. An EKG showed an acute myocardial infarction. Michael soon began experiencing acute shortness of breath, which prompted an echocardiogram. Results showed a large thrombus in his left ventricle.

Michael became increasingly hypoxic. His treatment team formulated a plan of action that included use of a ventilator. But at that point, Michael decided that he had had enough.

After years of joint pain, surgeries and fatigue related to his RA, Michael kissed his wife, took off his oxygen, and said that he was tired of fighting. He died nearly immediately.

As nurses, we often learn important lessons from our patients. Michael taught me the importance of monitoring regularly for CV disease in our patients. While Michael had a few risk factors for CV, including a history of hypertension and poorly controlled seronegative RA, the possibility of a significant CV was rarely foremost in my mind during our conversations.

Looking back, there are so many “what ifs” with Michael.

  • What if his seronegative disease had been caught earlier?
  • What if his disease had been better controlled?
  • What if he took less prednisone less frequently or had found a medication regimen that controlled his disease more adequately so that he could work comfortably without needing daily prednisone?
  • What if he had been on prophylaxis aspirin?
  • What role did his ophthalmic shingles play in his risk for MI?
  • What if the adalimumab had not been held so many times for surgery and infection?

Rheumatology, as with all of medicine, is ever changing. We are lucky to encounter special patients along our professional journey who need us and teach us. We must never forget the Michaels that we meet along the way, as they remind us that RA can be a life-threatening condition that needs to always be treated as the serious disease that it is.

Iris Zink, MSN, NP, is a nurse practitioner at
the Beals Institute in Lansing, Michigan, and the President of the Rheumatology Nurses Society.