Sickle cell Conquerors: Renee

Our next feature is Renee Dyson. Renee is a registered nurse and she's also the CEO and founder of New Nurse University where they specialize in coaching RN & PN nursing students (aspiring) and graduate nurses(Trying to pass Nclex). They pride themselves on bringing a different perspective of how to study and pass. Read Renee's story!
1.)How old were you when you were diagnosed with sickle cell? I was 2 years of age. My parents noticed something wrong when I would just hold my arms and cry
2.) How did it affect your childhood? My parents sheltered me from playing strenuous after school sports, they always where skeptical about me joining in anything that would bring on a crises. I stayed in the Larabida children's hospital so much I had my own personal room. I missed a lot of school and did a lot of make up home assignments.
3.) How did you cope with nursing school and sickle cell? As I got older, I learned to keep hydrated, and prepare breakfast and lunch if I was going to be in class long hours. On clinical days, I wore compression socks to keep my legs from going into crises from walking around so much. I had extra time to make up assignments when I would go in the hospital. I made sure the office of disability had me registered just in case I had to be in the hospital a while and missed very important tests. 
4.) How do you manage sickle cell and still have a thriving career and business? 
I made the choice that I have sickle cell, but sickle cell doesn't have me. 
As a former, Jehovah's witness, I kept the belief of not receiving blood products. So I haven't received any blood transfusions even though my normal hemoglobin of 8 has dropped to 6 a few times. Not saying receiving blood is bad but, it's just not in my beliefs. Compared to when I was a child, now I only really get hospitalized twice a year. I guess this terminal disease effects everyone differently. I just stay with my 2 liters of water, heating pad or hot showers to ease the pain at home, I wear compression socks for work and eat as early as possible so I can keep my energy up, since I work overnights. I don't take the narcotics prescribed, I just take Ibuprofen and OTC regular Tylenol when I feel my legs starting to tingle with pain. Stress is a big factor that brings on crises for me so I meditate at night before bed. I also try to keep busy in my business with things I like to do and delegate things that stress me out. So far it, has been working. I won't lie and say I eat healthy because I don't. That part is a work in progress
5.) Has sickle cell limited any areas of your life? Oh heck yes! On family vacations, I have ended up in hospitals out of state. By having a low immune system, I was hospitalized for pneumonia, influenza, kidney infections but never acute chest syndrome. 
 After passing nursing school and my first time taking state boards. The morning of my test, I woke up at 4am in a pain crises. Even though my test was at 2 pm in the afternoon, I didn't want to take any strong medicine for fear of being under the influence while taking my nclex. By the time I went to test I was super tired, in pain and couldn't think straight. I couldn't cancel because they have a rule of 24 hour notice or forfeit your exam. So I just took it anyway in pain, and ended up failing. What a devastating weekend. 
6.) How has sickle cell affected your personal life? My husband and I are high school sweethearts. Ironically, having sickle cell is how we got together. Being juniors in high school, after we became friends, I missed a week of school and when I came back he was frantic and upset because he couldn't find or didn't know how to get in touch with me. Once I told him about my sickle cell he has been by my side ever since. Fast forward and we have two beautiful children that have the sickle cell trait. We did have to go for genetic testing as well. 
Sometimes when I go to local hospitals that have staff that don't quite understand what sickle cell is, I'm called a drug seeker because I call medications by name. My husband gets really upset. Since we have experienced that we have to go to the ER 10 miles into the city so that I can get proper treatment. It's gets hard because he has work and the kids and I'm not close. I'm very lucky to have someone that supports me. 
7.) Do you have regular pain, related to sickle cell? How do you cope? Everyday I have pain in my legs, so I try to drink as much water throughout the day as I can. Hot showers like 45 mins, help me a lot! Distraction and staying busy helps a lot as well.
8.) How often are you in a crisis? How does it affect your life and routines? Can you describe a crisis for us? I have severe pain crises maybe twice a week. Mild pain crises everyday. The pain is most often in my legs from the ankles all the way up to my hips. If I start to get dehydrated my legs will tingle, then ache. My severe pain crises happens at night while I'm sleep (of course because I'm not drinking water). It wakes me out of my sleep. Full blown pain like there a several football players squeezing every inch of my lower half as hard a they can. It's the worst most excruciating pain, and when it gets to this level I am no longer able to walk. I hate waking up like this. My sleep is non existent sometimes. Plus having sickle cell doesn't just affect me. Everyone else around me life gets harder when I get hospitalized. 
9.) What is a typical day like living with sickle cell? I have to keep OTC medications on me at all times. I can't go long periods without drinking or eat anything or I'll have full blown severe pain crises. I get cold real easily and it's very hard to get warm. The winter time is very hard for me especially living in Chicago. I have to bundle with multiple layers of clothing.  I'm tired all the time, no matter how much sleep I get. It's very hard but I manage. 
10.) What advice would you give to those with sickle cell or those who want to learn more? To those who have sickle cell disease like me. Support groups really help you find other people that understand what you are going through. Don't be afraid to talk to someone about how you are feeling. Go to hospitals that have staff that understand what you are going through. Don't let sickle cell over power you. I have children, a loving husband, and went to college, graduated passed state beards and opened my very one aspiring nurse coaching business. You can do anything you put your mind too, if you just take one day at a time and set goals. 
   To those who want to learn more, get involved at your sickle cell association local non profit organization. They hold conferences and wellness fairs all the time. Volunteering your time to someone you know who has sickle cell disease is always a plus. Especially if you go to a check up or support group meeting with them. 

4 comments

  • I really admire your determination to become a Nurse. So, glad you shared your story with others. Very inspiring and motivating!!!!!!

    Lakesha Brooks
  • You Are Truly #Motivation, #Inspiration, #Success. Thank You For All That You Do! May God Continue to Bless You!!!

    Yulunda Morse
  • An enlightening journey to read about, Renee is truly an inspiration. I know I speak for many when I say finally someone who knows the struggle of being a student, mom, spouse, family member, and living with daily illness it does not get any better than Renee. Thank you for all you do.

    Antoinette Barned
  • A true inspiration!!!

    Jen West

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