Finding Your Routine with Marissa Cors
Sick Cells sat down with Marissa Cors, a California native living with sickle cell Hgb SS, to discuss how she’s managed SCD for the last several decades
“Having sickle cell feels like you’re living two separate lives at once: a normal life and patient life,” said Marissa Cors. “You get used to stopping your normal life to be a patient, which will affect your relationships.”
Marissa considers herself a “professional patient.” She’s lived with sickle cell for more than 40 years and spent the majority of her 30s in her hospital’s cancer center to keep the complications from the disease under control. “I had a five and half year battle with my Port-A-Cath,” said Marissa.
A Port-a-Cath, sometimes called a “port,” is a small medical device implanted under the skin usually in the chest area connected to a catheter (thin tube) which inserts into central veins. Ports allow fluids and medicines to be delivered into veins that provide direct access to a central vein. A port can be helpful to patients when they require frequent or repeat intravenous (IV) therapy, like chronic blood transfusions, or routine IV hydration. It’s also not uncommon for sickle cell patients to be “hard sticks” (i.e., someone whose veins are difficult to locate), so a Port-A-Cath is an option to ease this issue.
Sometimes, a person can develop a port infection. “Every Port-A-Cath I had contracted an infection. It was an exhausting cycle that led to me dialing back on my life. I had no energy and didn’t want to be social. But I couldn’t quit using ports because my body relied on them.”
As Marissa said, long-term battles with your health can be physically and mentally draining leading you to look for solutions to help catch a break.
Trying Something New
In July 2017, The Food and Drug Administration approved the first sickle cell treatment in nearly 20 years, Endari. “When I was able to come from the hospital, I knew I had to ease myself back into a normal life,” said Marissa. “A lot of people don’t realize that when you leave the hospital after being admitted for a long time, it takes time for your body to recover, not just from sickle cell, but from the entire hospital experience. Your body has to recover from IVs, recycled air, and the food. It can be a lot on the body. I started taking Endari in May of 2018. That and legal marijuana helped my body recover after long hospitalizations.”
Before starting Endari, Marissa took Hydroxyurea to maintain her sickle cell. “I took Hydroxyurea for 12 years straight. It made my hair change texture,” said Marissa. She still takes it alongside her daily doses of Endari.
The goal of Endari is to minimize complications associated with SCD in patients. Marissa’s experience, overall, has been positive. “Not only did I have a difference in my energy levels, I’ve noticed I have fewer sluggish days,” said Marissa. “With sickle cell you learn the patterns of your body, and I noticed I felt so much better.”
Finding What Works
Endari gave Marissa more energy and her pain medication intake went down 60%. It’s clear its impact was positive for Marissa,but starting a new medication isn’t always easy. “The packaging isn’t great and the powder is super fine and messy,” said Marissa. The medication also requires you to take it with an 8 oz. glass of water, twice a day.
Despite the sometimes challenges that come with taking new medications, Marissa expressed to us that as a “professional patient,” she conditioned herself to practice discipline when taking new medications. “Sickle cell patients don’t keep ‘regular’ hours so scheduling when you take your meds can be tough. If you have a sincere and distinct desire to improve your health then the messy powder and number of doses won’t bother you. You’ll just find what works for you,” said Marissa.
Marissa takes Endari when she’s most dehydrated (i.e., in the morning and after hot showers/baths) so she doesn’t mind drinking it with the full glass of water. It’s about finding what works best for you.
A More Challenging Endeavor
While Marissa’s experience Endari was positive, she was open to exploring other treatments, as well. The Food and Drug Administration approved Oxbryta™ for patients 12 and older on November 25, 2019. When we spoke to Marissa she’d been taking it for two weeks. “Three pills a day is a lot and the pill is huge,” said Marissa. “I was also nauseous for the first 10 days of taking it which led to me sleeping less which led to stress.”
If we’ve learned anything about Marissa, it’s that she’ll do all she can to fit Oxbryta™ in her routine despite the challenges it presents. Taking new treatments comes with discipline but her journey with Endari proved to be worthwhile.
Whether you’re exploring one of the three new sickle cell medications, receiving red blood exchanges or sticking to Hydroxyurea, incorporating treatments into your day-to-day life and staying disciplined can have a positive experience on your health and that’s a feat we’re all striving toward.
Disclaimer: A total of 36 states, District of Columbia, Guam, Puerto Rico and U.S. Virgin Islands have approved comprehensive, publicly available medical marijuana/cannabis programs. You should always consult with your physician or other health care professional before using a new product or medication.
