Tosin Ola

Tosin Ola has garnered national attention for her activism and leadership within the Sickle Cell community. Learn more about how her experience with the disease led her to found Sickle Cell Warriors, Inc, and how her labor of love continues to inspire optimism for sickle cell patients, families and health professionals.

Overview

Tosin Ola, BSN, RN, is a medical professional who knows exactly what patients go through when they have Sickle Cell Disease (SCD); a life-threatening and tortuous disease. She knows because she has it. Her story of strength and perseverance began at a young age, when hospital visits for this devastating disease became routine. Perhaps the biggest catalyst in her life came later though, in 2005, when as a practicing nurse she experienced another painful episode. During a long hospitalization, she began to look online for resources for Sickle Cell patients, hoping to find a way to connect with others who understood her struggles. When she didn’t find what she was looking for, she decided to create her own blog, and founded Sickle Cell Warriors, Inc. Fast forward to today… her blog,SickCellWarriors.com serves thousands of patients, families, and healthcare professionals in the sickle cell community, and her Facebook page has over 21,000 members.

Awards & Achievements

Associate Degree in Nursing – Oakwood University

Bachelor Degree in Nursing – University of Phoenix

President of Sickle Cell Warriors, Inc.

Advocate at Sickle Cell Alliance Foundation

Corporate Liaison at Mast Therapeutics




Interview - Question & Answer

Tosin, will you tell us a bit about your background?

From birth to four years old, and again from the ages of 10 to 18, I grew up in Nigeria. My parents came to the U.S. to work on their tertiary degrees. My dad came with the entire family when I was 4 years old, and my mom returned to the United States to work on her PhD with my sisters when I was eighteen. I enrolled Oakwood University, my childhood dream college, that same fall.

What was your life like growing up?

Nigeria is the most populous country in Africa, and not different from growing up in any urban or suburban city in the U.S. I had a wonderful childhood. Imagine running around the neighborhood all day with my siblings and friends, picking mangoes right off the trees for a midday snack, climbing the guava trees to throw some fruit down to the others, and watching lizards lie in the sun. My dad was a minister, so we were the quintessential pastor’s family. My grandmother lived with us in her later years, as well as several extended family members. So, I grew up surrounded by family, love and the support and wisdom of a multigenerational household.

I have three sisters, and we all went off to boarding school. We were in boarding school for most of my high school years. Boarding school was our first taste of independence. We each had to choose our course of study from 7th grade. I chose Sciences, because I knew that I wanted to be in the medical field, while my sister chose the Arts because she wanted to be a lawyer.

What inspired you to become a nurse?

When I turned sixteen, my grandmother had a series of TIAs (mini-strokes). I was home that summer and ended up taking care of her, as she was unable to do anything for herself. I got to bathe her, feed her, change her; pretty much every level of care that she required. It was there that I got the first taste of the fulfillment that service to others brings. Even though at times it was difficult, I knew that everything I did had a direct impact on my grandmother’s well-being. It was with great joy that I took care of her. She wasn’t invalid for very long, she died that summer, and with it was the end of an era.

Were there any other factors that motivated you to pursue nursing?

I have sickle cell disease. It’s an inherited painful and devastating illness that wreaks havoc in your body. My red blood cells often take on a sickled shape and stick together, causing blockage in my blood vessels; effectively cutting off the circulation to my cells, tissues and organs, which leads to ischemia *(an inadequate blood supply to an organ or part of the body, especially the heart muscles); and if prolonged, tissue necrosis *(the death of most or all of the cells in an organ or tissue due to failure of the blood supply) and then eventually organ failure and death.

When your body lacks proper circulation, those tissues end up sending pain signals to the brain over and over and over again. The clumping is very painful, and these episodes can occur at any time, without any notice. I would spend days in the hospital, suffering in excruciating pain. To describe the pain, also known as “crisis”, if you’ve ever had a root canal, charley horse, or a bone break; the pain you felt in that moment, imagine it never easing, never receding; just wave after wave of unrelenting pain. Although sickle cell affects 100,000 people in the United States, it affects millions all over the world. Most people with the trait don’t know that they have it and end up passing the disease on to the next generation.

Did you require hospitalization?

As a result of having sickle cell disease, I’d been hospitalized several times in my young life. On average, I visited the hospital every 3-4 months, and stayed in the hospital for up to a week at a time. I noticed then, that even though the doctor came in for only a few minutes, the person that was there for me all through those painful days and nights were the nurses. They were the ones who wiped my tears, who helped me get comfortable, who advocated for my pain. I realized very early on that nurses are the unsung heroes in the hospital setting.

Did you know right away that you wanted to pursue a degree in nursing?

When I was going off to college, I couldn’t decide on my major. My mom suggested nursing, and her advice stuck. I filled out the paperwork right then and sent it off to Oakwood University. I was going to be a nurse!

What happened after college?

When I first passed the NCLEX, I didn’t know what road to embark upon. There are so many areas in nursing, and although school had prepared me for all of them, I had not found my true purpose. I was good at everything it seemed. I applied for a job at the University of Maryland Medical System (UMMS). They had two positions open for a new grad; one in Telemetry, and one in Neurology. I chose telemetry, and thus, set myself up for a most interesting career.

What was it like to be a nurse in a Telemetry unit?

After orientation, I quickly learned the routines of the unit. My manager, Kerry Sobol, was an excellent leader. She encouraged us new grads to branch out and learn as much as we could in various hospital settings. Our unit was closely aligned with the ICU as it was right next door, and we often transferred patients back and forth. I was also exposed to the Trauma ICU, dialysis unit, med-surg, Neuro, and various clinics. I worked at UMMS for three years, and this was the foundation of my nursing experience. Through this time, I worked my way through the ranks into being the shift charge nurse. I also gained teaching experience from orienting new grads and precepting the nursing students enrolled in the nursing school.

What came next?

After UMMS, I decided to move to California. Following a year gap of enjoying life and exploring all that California had to offer, I dipped my toe back into nursing by working per diem through several nursing agencies to check out the hospitals in San Francisco Bay area to figure out the one I would like the best. Per diem pays well but it does not provide the structure and collegial support that working on a unit brings. After floating for a while, I nabbed a job on a med-surg/telemetry unit at Kaiser Permanente in Oakland. I was working second shift, also as a charge nurse, and floated on nights as needed. This is my favorite shift…you get to sleep in your own bed at night, but you don’t have to wake up early.

How long did you work in the med-surg/telemetry unit?

I only worked there for a year since my husband got transferred to Portland, Oregon. Once again, the flexibility of nursing meant that I could get a job as soon as I walked off the plane. I took a travel contract to learn about the area and hospitals. I ended up doing travel nursing for three years, both in Oregon and California. One travel contract I took allowed me to work in Santa Barbara, and I loved living by the beach. No wonder we are back to living only one mile from the beach.

What did you do after travel nursing?

After travel nursing for close to three years, I finally found a place to call home. I decided to work in the Trauma ICU, something that had tempted me for years. During my travels, I had run into Mandy, a wonderful nurse anesthetist. She loved her job, and she brimmed enthusiasm. She made me think that it was something that I would enjoy doing. The OR was a vast field that I hadn’t fully explored, and it was refreshing to see a nurse at the forefront, with as much responsibility and abilities as a physician.  I decided to become a nurse anesthetist, and to do this, I needed to have a full year of ICU experience. Although I had some ICU experience from my various per diem and travel gigs, I didn’t have a full year, at least not enough recommendations to get me into anesthesia school.

What steps did you take to meet your goal of becoming a nurse anesthetist?

After studying the requirements for anesthesia school, and seeing what I lacked, I joined the Oregon Health Sciences University Hospital (OSHU). I thought that by working there, I might get connected into their anesthesia program. I completed my orientation and worked there for a year. During a case with one of my patients, I went to assist in the OR. That was when I realized that this goal was for naught. I couldn’t stand the smell of seared flesh, the coldness in the OR, or staring at the patient as they worked on him. Oh, my word. It was so nauseating. I ended up ducking out and leaving the surgery. I realized that day that there was no way I could spend the rest of my career in an OR room. I didn’t have the stomach, stamina, or the heart for it. Kudos to all the nurses who work in the OR, you guys rock!

Your reaction must have been very unexpected!

It’s so funny because I’m not normally squeamish. I can watch the grossest things, deal with much aplomb with code brown, code red, or code green; but something about surgeries just gives me the heebie-jeebies.

Please tell us about your experience in the Trauma ICU…

The Trauma ICU is not for the faint of heart. You see people your own age or younger, who are now dead or severely injured from car accidents, suicides, or random accidents. The golden hour: you had so much to do to save that patient, and it was a high-stress environment. I couldn’t just turn it off and leave it at work. I would come home in tears or have nightmares and flashbacks. I have to admit that after a year, I was burnt out and struggling. My sickle cell was acting up. I was having painful episodes, on top of painful episodes. Sometimes I would be at work and have more pain than my own patients! They would be rating their pain as a 5 on the Baker-Wong pain scale, while I was nearly in tears at an 8 taking care of them. The stress is a trigger for my sickle cell, so I decided to go after a less-stressful work environment.

What did you do next?

I found a job at a surgery center, and once again became the charge nurse. The surgery center was a huge change from the busyness of the Trauma ICU, and I welcomed it. I dodged working in the OR, and kept outside, dealing with patients and families, keeping to the schedule, maintaining the flow, and helping everyone out. After working here a year, there were changes afoot in my life again.

What changed?

Sickle cell disease is at the center of my life. It affects my every waking thought. Will I have pain today, what did I do to trigger this pain episode, is my heart going to give out today? Can I walk without pain today? Did I drink enough water to ward off a pain crisis? Oh snap, I have pain. Oh my, it’s horrible, it’s the worst pain. Should I go to the ER or just try to tough it out? Should I call out sick or go to work in pain? These are regular decisions that someone living with sickle cell disease is making.

I had started the advocacy organization Sickle Cell Warriors in 2007. Sickle Cell Warriors, Inc., is a nonprofit organization dedicated to raising awareness, education, and empowerment for those living with sickle cell disease. I refer to us patients as warriors because every single day that we live our lives, that we survive, it is a battle won. According to the Centers for Disease Control, the average mortality for a woman in the U.S. with sickle cell disease is 44 years old. This is up from the dire predictions of my 20s, when it was far lower. However, knowing that each moment you are alive may truly be your last puts a different lens on your life, decisions, and even your career choices. For me, it was important to help shape the sickle cell community, raise awareness, and build stronger networks and relationships. My nursing experience and education bolsters me when doing community education, public speaking, and advocacy events.

How did you end up working for Mast Therapeutics?

At one of the Sickle Cell Warriors’ events, I met the leadership of Mast Therapeutics and was invited to join the team. My commitment to raising awareness of sickle cell disease matched the company’s commitment to the research and development of interventional treatment for vaso-occlusive crisis – the hallmark of sickle cell disease.

Being a nurse was my sole qualification. As a nurse, I had helped countless patients, but now, I have an opportunity to help myself and others suffering from sickle cell disease.

What was the biggest academic challenge you faced while pursuing your education?

The greatest academic challenge was my sickle cell. You never know when a painful episode is going to strike, and when it comes, you can’t do anything. Some days I can’t walk, and my husband has to carry me to the bathroom. Other times, I can’t even get out of bed because the pain is so bad.

When I was working on my Associate Degree, it was hard to get to class when I had a painful crisis episode. I remember that my classmates would record the instructor, bring my homework and tests to the hospital room. I worked on it while hooked up to pain meds, blood, and IV fluids. Nothing was going to stop me from getting my degree. I spent just as much time in the hospital for clinicals as I did being admitted. But fortunately for me, my School was dedicated to my success. The instructors, Mrs. Floyd and Mrs. Gwebu, and Dean of Nursing Dr. Anderson especially, went above and beyond to ensure that I was able to graduate with my class.  I had to study ahead when I was well, so that when I ended up unable to do anything because of the excruciating pain, I could take a small break and still be with my class.

My next challenge was finances. Because I was an international student, my tuition was four times more than a regular student. When you factor in books, housing, health insurance, food and other necessities my expenses came out to $10,000 a semester. My mother was working three jobs, financially supporting my younger sisters and paying her own studies. My father worked as a pastor in Nigeria, and due to inflation, his salary came to roughly $60/month. Together, my parents would give me $2,000 a semester and I had to come up with the rest.
As an international student, I was not eligible for most grants or loans. However, the folks at the Financial Aid office became used to seeing me almost every week since I was applying for every scholarship that I was eligible for. Every week, I would turn in applications for four-ten scholarships.  I applied for so many scholarships that I could create a perfect application essay in a matter of minutes.

Where did you work? How did you manage work and school?

week serving as an office assistant to a professor. I worked off campus for another 20 hours at the mall. Time management became my nemesis as I struggled to balance my studies with two jobs, sickle cell disease, nursing school clinical, studying and sleep. I had to sacrifice social time and the usual collegiate experience. I was either in clinicals, studying, admitted to the hospital, studying, or at my job, studying. Learning to balance the demands of my time was a huge academic challenge but I was determined to do well in school.

What was the biggest emotional challenge you faced?

The greatest emotional challenge comes again courtesy of sickle cell disease. I hated having to call out sick, knowing that my colleagues would have to pick up the slack. Sometimes, I would come to work in excruciating pain, just because it was too late to call out. It was hard to explain to each coworker why ‘Tosin is not always at work’. Although most people were understanding and supportive, invariably I would get some caustic clap back, or rancor for my frequent absences. It’s not my fault…I don’t want to NOT come, I can NOT walk. I can’t come to work because I physically can NOT move my legs to walk, I want to say over and over again.

I am also constantly trying to balance my life, so I don’t fall sick. A painful sickle cell crisis episode can be triggered for one of the following reasons:

  • Dehydration: I have to drink at least two liters of water.
  • Traveling: For trips involving air travel, I have to have a buffer period of a couple of days to recuperate from flying. Flying on a plane can trigger shortness of breath, breathing difficulties, or acute chest syndrome. The oxygenation concentration changes when you go to high or low altitudes. This puts more strain on your system and for someone with sickle cell may lead to a pain episode. I may have a pain crisis either before my flight, during the flight, or after the flight. Being immobile for long periods of time can cause blood clots in your legs. So I have to remember to do leg exercises, or get up to walk every hour.
  • Menstruation: I have a guaranteed pain episode every month because of my period.
  • Temperature changes: Anything that rapidly changes your body temperature can trigger a pain episode. Moving from hot to cold, or cold to hot
  • Swimming pool: Every time I go swimming, I get pains all over my body as soon as I come out of the water. This is probably due to the vaso-occlusion of my micro-vessels
  • Jacuzzi: Even though this is a warmer body of water, when coming out of the jacuzzi, I still may get shooting pains like a charley-horse on my back, legs, and arms.
  • Going from room temperature to A/C or vice versa.  Even going from being outside into an air-conditioned environment can trigger a pain episode.
  • Weather related temperature changes: The atmospheric pressure changes when a weather shift occurs, so not only due to a change in temperature but also a change in pressure can trigger a crisis. If I am not dressed warmly and the sun goes down, it gets windy, or rains; I might have pains in my legs. I always have to take a sweater with me when I go out because I don’t know how the temperature will be at any given time.
  • Infection:  Any bacteria, infection, or germs can trigger a pain episode. What might be a simple cold for a regular person to someone with sickle cell might turn into a serious hospitalization, on the ventilator, unable to breathe.
  • Emotional stress:  Stress is my greatest trigger and any stress can lead to a pain episode. Worry, excitement, tension, anger, sadness – all of these emotions can trigger painful episodes if you have sickle cell.
  • Physical stress: Over-exertion or too much physical activity can lead to pain. Anything that changes the hemodynamic status of your body has the possibility of triggering a sickle cell painful crisis. I have had pain after working out in the gym, riding a bike, running, or any exercise. Can you imagine feeling excruciating pain all over just because you did a workout video or went for a hike?
What are the most important characteristics for a nurse to thrive professionally?

The first thing is you have to have compassion. Nursing is a feeling job and you shouldn’t do it if you’re just in it for the money. People can tell whether you actually care or not.  Take care of your patients as if they were a member of your own family. Go the extra mile, don’t just do the basics.

The second thing is you have to be able to let go of the job when you walk out the door. Sometimes your patients are very critical, and you may not be able to save them. There are so many times that I would end my shift knowing that I may not see that person the next day. You have to be able to separate those emotions and not let it affect you personally. Just be there for them as much as you can but when you get home let it go. Don’t let it affect your home life.

You have to be really good with prioritization. Nursing will teach you how to multitask and how to get multiple things done well all at the same time. Everyone always talks about critical thinking but to me this is the crux of what critical thinking is. ‘How can I achieve this outcome with the resources, time, and knowledge at my disposal?’

Be open to learning from everyone. Even housekeeping can teach you something about patient care or how the hospital runs. You can glean knowledge from every single person you come across. Don’t feel superior just because you are the nurse, you will never know everything about everything.

Don’t be afraid to ask for help. Sometimes, nursing culture makes it seem as if you have the weight of the world on your shoulders. Don’t be afraid to ask for help. It’s better to ask for help and be rejected than to not ask for help and have something bad happen. If you ever have free time, offer to help others. You are part of a greater team and you have to serve not just your patients and their families but also your team.

What does it take to be successful in your job as a Corporate Liaison?

Right now I work in the pharmaceutical industry. They are always looking for nurses because we provide a unique perspective. We can relate to and communicate with the consumer base. You need to have a bachelor’s degree and are enrolled for your master’s degree. Your master’s degree does not have to be in nursing, but it should be science or business related.

Please tell us what “a-day-in-your-life” is like…

I have 18-month old twins. I get up in the morning around 6 a.m. and get the twins and myself ready for the day.

I can’t go into a lot of detail because of the sensitive, confidential nature of what I do. The first part of the day, I spend working in 30-minute blocks on various communications, research, or marketing projects. After lunch, I make phone calls, check emails, and have team meetings. I usually stop working at 5:00 pm and go home.

About once a month I may travel to a sickle cell event or scientific meeting. I may have the opportunity to give a presentation, or speech. I enjoy going to conferences and events because it allows me to connect with the sickle cell community.

Please share an experience when you faced adversity, and what you did to overcome the challenge…

There have been many times when I wanted to quit the nursing career. My main reason was my health. Having sickle cell disease, and frequent painful episodes that would start with no warning; it was often difficult on me and my job. It’s really hard to explain it to your co-workers why you were not there for weeks at a time. This is why I have done per diem for about half of my career. Because when I’m not feeling well I don’t have to pick up shifts and when I’m feeling fine I can pick up shifts. That has been my solution to the times when I wanted to completely quit and walk away. I would just switch to per diem and work when I felt better.

Name one thing would you like to change about the nursing industry…

For starters, I feel that nurses should get paid more and should be entitled to more benefits. My current job has been the only job that I’ve had where I did not have to pay for health insurance. We work in healthcare, but our health insurance is so expensive. I really wish hospitals would offer a more comprehensive benefits package.

More nurses should be in nursing leadership and the hospital leadership. We are often asked to do so much with so little.  Resource allocation (including human capital) should be equitable and fair. Nurses are working so hard and doing so much for so very little. We need more ancillary support with the basics, so we can provide excellent care.  When you cut corners, it is the patients that suffer.

Anything else?

My next preference would be for an easier route to higher education. Nurses are the lifeblood of the medical system, but we are not treated as such. We want to have a more learned nursing workforce, but it’s hard to balance work with school.  There needs to be more comped programs, so it isn’t as expensive.

What should an aspiring nursing student look for in a nursing program?

 

You should look at their attrition rate. How many students from the same cohort actually graduate together at the same time? If a school has a high attrition rate it means that most of their students do not make it all the way through the program. You don’t want to have to start another program somewhere else after you have invested several years into one program.

The next thing you ask about during your interview is their pass rates. You want to go to a school that has a higher pass rate so that you will be guaranteed learning everything that you can to pass the NCLEX. Many places now have waiting lists so you do have to sign up at multiple schools but make sure all the schools on your short list of good attrition rates and NCLEX passing rates.

What should a nursing student expect in their 1st year of nursing school?

The first year is mostly theoretical studies and you are learning the basics of nursing. It is focused more on book learning but this is when you have to study and do well so you can set your GPA very high. The second and third and fourth years get harder and harder so don’t flake during the first year. Try to get at least a 4.0 GPA because the following years will bring your GPA down.

Try to have a nursing mentor in a senior class so that they can tell you the program hints that you are going to need to do well. It’s better to have a nurse mentor from a senior class so they can help guide and support you during your program.

Any advice for preparing for the NCLEX?

To prepare for the NCLEX, do as many practice questions as you can. My goal in school was a hundred practice questions a week for my first year, 200 questions a week for my second year, and 500 questions a week until I took the NCLEX. Read the answers and the rationale so that you can get used to thinking like that. Even read the answers on the ones that you got right so that you understand the rationale. As I got closer to the NCLEX, I increased the number of questions I did every day.

What’s the best advice you have for handling the stress of nursing school?

The secret to nursing school is to manage your time well. I had a daily schedule and every single minute was accounted for. On my schedule, I put in my study time every day.  For every credit of class I was taking, I factored in three hours of study a week. So, if the class was a three-credit class, I planned nine hours of study time into my schedule.

If you put in your class time, your clinical time, and your study time into your schedule, you will find that you have very little free time. You will have as much free time as you want once you graduate but you have to put your studies first. If you get below a 75% in any class, you will have to drop out of the nursing program. So, plan to do well.

How should a nursing student choose a specialty?

While you were doing clinicals, try to visit every single part of the hospital. Find the areas that you enjoy the most, that you like the routine or the types of patients. Once you graduate, it is recommended that you do one year of General Medical Surgery to build your Basics. However, I noticed that a lot of specialty programs are taking students right out of nursing school. So if you can get into your specialty from the very beginning of your nursing career, try to.

If you don’t know what area you want to do, try to get into the ICU or ER. The ICU or the ER will give you experience with a lot of different patient populations and you can figure out what you like from there. These two arenas are also good for getting to understand how the hospital works, the managers of other units, and nurses and other units. So if you are going to do an internal hospital transfer, you would have people to recommend you or give you some insight.

What advice would you give to someone who wants to follow in your footsteps?

Everywhere you go, in any arena that you are, build and nourish your relationships. I always have good working relationships with my nursing leaders, managers, co-workers, patients, and their families. Most of the strategic moves that I made in my career was as a result or invitation from someone that I’ve worked with in a previous job.

Any tips for job seekers?

The current job that I have at Mast Therapeutics was because I was at an event for my nonprofit organization Sickle Cell Warriors, Inc. So, always be at your best because you never know who is watching.

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