*Original post released on 4/29/23
As nurses, we manage patients with histories of chronic illness(es) all the time and usually they’re admitted for acute exacerbations of those conditions. What happens when the roles are reversed and now you’re the one managing your own chronic illness, all while trying to work professionally as a registered nurse? Well, in this article, I’ll discuss my own chronic conditions and what all goes into managing symptoms, follow ups, treatments, and balancing those with work. First, I’ll give you a little background about my recent medical diagnoses and then we’ll move on to discussing how I manage everything while maintaining work, life, and family balance.
I originally posted this article about being a nursing student with a chronic illness, so if you’d like a bit more background information about me, you can check it out here. Otherwise, here’s a brief synopsis! In fall of 2016, I was being worked up for chronic migraines and we discovered, via MRI, that I have a benign pineal gland brain tumor. At that time, I also had a lumbar puncture which revealed elevated intracranial pressure in the high 20s (high normal for an adult is 15 mm Hg). They tried medication therapy with various diuretics to try and lower the ICP, but it was without success.
At that time, I was also quite overweight; so, my neurologist strongly urged me to lose weight via gastric bypass surgery. At the very end of 2016, I got RNY gastric bypass surgery and ultimately lost over 100 pounds (that have been kept off to this day). The migraines improved for the first 3-6 months and then gradually returned with frequency and intensity. Currently, the tumor is still present, my ICP is within high normal range, and the migraines are at daily frequency with intensities of at least 6/10 or higher. Dealing with chronic daily pain and multiple difficult diagnoses has led to dealing with anxiety and depression on top of everything else.
Typical daily symptoms that I experience and have to either grin and bear or manage with medication include: migraines, eyelid swelling, eye/neck/back pain, sensitivity to external stimuli (light, sound, touch), side effects from medications (eyelid drooping, pain, swelling, injection site reactions, bruising, etc.). At this point in time, I am also expecting…so my symptoms have worsened temporarily (*hopefully*) and require additional monitoring for safety of myself and my baby.
As a patient (and nurse) with a chronic illness, I routinely see a primary care physician (PCP), neurologist, neurosurgeon, psychiatrist, and an OBGYN since I am also currently pregnant and deemed high risk. The typical frequency of visits for each specialty varies but is typically every 3 months, unless I am actively receiving treatment or trying a new medication/dosage of a medication. Ultimately, I have at least one appointment each week. Each specialist appointment copay with our current insurance is $125 per visit, not to include any costs of labs, diagnostics, medications, etc.
As a person dealing with a chronic illness, there are so many aspects of care that you don’t usually think about. Firstly, you undergo routine and sometimes frequent labwork, diagnostic tests, and treatments to monitor and manage your condition. For me, this includes labs to monitor vitamin levels, for anemia, my coagulation studies, and lipid panels. Additionally, each year I undergo a MRI with contrast of the brain to monitor size, growth, and potential malignancy of the tumor. I also have a diagnostic (and sometimes therapeutic) lumbar puncture to check ICP levels and relieve any extra fluid to lower my ICP if elevated. When not pregnant, I undergo quarterly Botox injections for migraine management which includes a series of 30 injections to the face, scalp, neck, and shoulders. In the past, I’ve also had routine occipital nerve blocks to try and mitigate the migraine pain, but those were unsuccessful and thus, stopped.
When managing a chronic illness, you also have to consider the medications, insurance claims and authorizations, and potential admissions during times of exacerbation. Right now, my insurance changed at the beginning of 2023, so I was forced to get a new PCP and change all of my specialists. This required me to first see my PCP, obtain his approval to request referrals to the specialties I require, insurance to approve the referrals, and then I could schedule an appointment with each new specialist. That timeline itself took up to 3-4 months just to see each specialist, which resulted in a delay of care, pain management, access to medications and treatments, and multiple urgent care visits for inability to manage symptoms at home.
Many of the medications I require to manage my pain and tumor/high ICP symptoms are expensive or have the quantity covered limited by insurance. Currently, I take three medications (Fioricet, Nurtec, and Reyvow) for migraines with only one being covered by insurance for a total of 20 tablets per month, leaving me to choose the days I want to suffer less. The medications that aren’t covered cost over $1,000 each for 8 tablets for the month, so I rely on samples from my neurologist because it’s so unaffordable for my family. Then add in the cost of monthly vitamins to prevent anemia and deficiency (vitamin B12, D, iron, prenatal), anticoagulation (aspirin, lovenox), and any unplanned urgent care visits when medications are unavailable during times of exacerbation…that adds up FAST!
So how does all of this affect my ability to work as a registered nurse and what is the plan for future management of my conditions? At work, I have marked decreased energy and stamina. I am easily fatigued and often have to work at a slower pace. Often, I am unable to take certain medications (if I even have them available to me) due to their side effects or because they are a controlled substance. It’s often difficult for me to recover after a long, difficult shift and it can be really taxing on my body to work consecutive shifts in a row. At times, I have to call in sick occasionally during times of migraine and/or symptom exacerbation. It can make it difficult to provide for my family, as I am our sole income earner at the moment and it doesn’t reflect well professionally.
What’s the plan for managing my conditions in the future? Well, we’re definitely exploring all the options I have because the migraines, symptoms, and side effects have gotten worse to the point of affecting my quality of life on a daily basis. Since I’m pregnant, many of my options for treatment have to wait until after the birth and the (at least) 6 week healing period. We’re looking into a treatment currently, that’s safe during pregnancy and non-invasive, which is called TMS or transcranial magnetic stimulation therapy. This can be used to mitigate migraines, anxiety, depression, and many other conditions through the use of short sessions with a magnet directed at specific locations in the cranium. The downside to this therapy is that it requires daily treatments of a few minutes for a full 7 weeks in order to be effective, and our copay is $70 per visit or a total of more than $2,500 for the treatment. Right now, that’s not possible for my family to afford.
Other options for the future include placement of a ventriculoperitoneal (VP) shunt to drain excess CSF from my head into my abdomen to make sure my ICP stays within a normal set range. This would require surgery that inserts a catheter into the ventricle of my brain which is then tunneled under the skin to terminate in the abdomen. It is still technically brain surgery. At this point, my ICPs have been in the higher end of normal range, so the likelihood of symptomatic relief from the shunt is minimal and thus, the risks outweigh the benefits. Another ultimate option would be surgical removal of the tumor. Due to its location in the brain, many neurologists and neurosurgeons that I’ve seen are reluctant to remove the tumor as it would be a high risk brain surgery. So, in the meantime, we continue with medical management and urgent care visits to treat exacerbations until after the birth when I can resume taking stronger migraine-specific medications and Botox injections.
I hope this article helped give you some insight into what your patient’s life can be like when managing a chronic illness and the concerns they likely have (finances, transportation/authorization for appointments, delays in care, insurance claims, medication management, labs/diagnostic tests, effects on quality of life and ability to work). As a nurse, we can forget about these aspects of a patient’s care and easily come to take our own health for granted. My ability to work and provide for my family is constantly threatened by an exacerbation of or change in my conditions. Struggling with my own chronic illness has definitely given me perspective and compassion in the care that I provide to my patients, and my hope is that it will open your eyes too when providing your own patient care. Until next time, happy studying!
Andra Alyse
The Study Nurse 