Written by Sickle Cell Warrior on 18 February 2012
Hello everyone. This weeks’ warrior is Kandis Moore, a sickle cell warrior, mom and licensed practical nurse. She has laid out her life story for us all to learn from. Check it… How old where you when you found out you had sickle cell? My mom found out when I was 6 months old, back in April of 1981 that I had sickle cell. How were you able to cope with school and sickle cell? It was HARD!! But what DID help me cope with having sickle cell was going to Sickle Cell Camp as a kid out here in California with the Sickle Cell Research Disease Foundation (SCDRF) thanks to Mary Brown. I started going there when I was 7 yrs old until I was 14. Then we found out about Camp Dream Street & began going there when we were like 14 yrs old and then when I became 18, I went to camp once with the Dream Street Program in Tucson, AZ called The Canyon Ranch Health Resort. I live in Long Beach,Ca and grew up in Long Beach Memorial Medical Center on their pediatric HEMOC/ONC floor until I was 21 yrs old, so I had VERY good doctors who specialized with kids who had this disease & were growing up with it & they guided me and helped me through school to maintain a 3.0 GPA and graduate with HONORS!! *Remember, I was born in 1980 so the new stuff that it out now and improved technology and medical advances for sickle cell, me and all of my childhood friends from camp living with it were a part of!! How did your childhood and your parents influence you in your choice of career? My childhood influenced me MAJORLY with my choice of career because the hospital was my second home away from home. I was sick and in the hospital so much that by the time I was 14 yrs old I knew how to handle my IV equipment and drip manually like the nurses who took care of me, lol. My parents however didn’t really influence my choice of career, but their drug addiction to crack cocaine DEFINITELY did!! Their drug addiction made me not want to EVER use this or any other drug of choice along with alcohol. Growing up with this illness & having drug addicted parents was VERY HARD because I OFTEN blamed myself & my illness for their usage. My dad never really spoke to me about it, but my mom blamed herself for YEARS whenever I was sick. Back then there was no testing like there is now, and my mom turned to drugs as a result of having a hard time coping with her life, trials and tribulations. However, my mother went into the drug program in 1986 and gave temporary custody of me to my Auntie Barbara (who is also her Aunt, my grandmother’s sister) until she got herself clean and back on track in 1990. If it wasn’t for my Auntie, I honestly don’t think that I would be the person that I am today!! Her having many high standards for me, and me always remembering her in the back of my mind and NEVER wanting to disappoint her, is what made me go to school and get those good grades and become a career achiever. What do you do? What kind of experience and schooling does one need to get your job? Today (2012) I am a LVN (licensed vocational nurse) out here in California. To get my career of choice you must complete high school and you can go to your local community college or do a trade school. On the West Coast we’re called LVN’s but on the East coast they’re called LPN’s (licensed practical nurse). I have my AA & AS degrees along with my LVN certification. I am also certified for IV therapy & blood draws. We work in the hospitals, at psych facilities, or skilled nursing facilities. I work in Med-surg in the hospital so I can take care of sickle cell patients. I REALLY enjoy my job and what I do for a living. I like getting SC patients because I can identify with them, share my experiences, and inspire them to achieve as well. Describe a typical day on your job. A typical day on my job would be to clock in @ 6:55am to do a 12 hour shift (7a-7p) and get report from the nurses on the night shift (7p-7a) about my patients that I am about to have. By 7:30am I am going room to room doing my rounds, checking on my patients and introducing myself letting them know that I will be their new nurse for the day and asking them if they are in any pain. I will then have my CNA do all vital signs on them (unless I have a primary patient, then I would have to do this myself) & then I will begin preparing morning scheduled meds, checking their charts for any scheduled surgeries or tests the doctor may have planned. Around 10:30am I take my 1st 15 minute break and then I will come back and begin preparing for afternoon meds or blood sugar testing for diabetic patients. Sometime I may have the occasional patient who is scheduled to be discharged from the hospital today on my shift and I will have to prepare their discharge paperwork and give them discharge teaching on their diagnosis post hospitalization and let them know that they have to schedule a 2 week appointment with their primary care physician for a follow-up. Around 2:30pm I will go on my 30 minute lunch break (but when you have a cool charge nurse they give you at least 45 minutes because your working a 12 hour shift) that way when I get back my last 4 hours on shift will breeze by and I’d be off in no time, lol. Now, when I come back from my lunch break, most of the time I will have to admit a new patient. If admit a new patient; I have to do ALL the admitting paperwork on this patient and call the doctor for orders on IV drips and pain or any other medication they may need while under my care. Then I assess for wounds and start an IV if they don’t have one already. Around 5pm they are getting their dinner trays and I am preparing for their evening meds (my last med round on my shift) and then by 6pm I’m doing my last amount of paperwork for closing on my shift so that my new shift is up to date on what has gone on during my time with the patient. Once its 7pm my time is DONE and I am NOW waiting on giving report to my oncoming change of shift LVN or RN, and then I clock out by 7:25pm!! Wow, what a busy day. How do you manage SCD and still maintain a thriving career? It’s hard, but it’s doable. I am working 3-12 hour shifts a week, so being on my feet for most of the day can get exhausting. This was ESPECIALLY hard for me at the time in the beginning because I had “avascular necrosis of the right hip” with my sickle cell since the age of 14, so I had a very prominent limp and my right leg was shorter than my left leg. Working in the medical field inspires me and it makes me happy to take care of people who are in similar or the same situation as me. Have you noticed a difference in how your coworkers treat you once they know you have SCD? OH NO!! NONE OF MY COWORKERS HAVE EVER TREATED ME DIFFERENTLY ONCE THEY KNEW I HAD SCD, because I am ALWAYS open and UPFRONT about me having it when I go in for interviews and start my floor training. If anything they look out for me and make sure I’m hydrated and will tell me “Kandis your eyes are yellow go drink you some water” or they let me take that “extra” 15 minutes on my supposedly 30 minute lunch break, lol. What advice would you give to someone wanting to join your profession that has sickle cell? The advice that I would give to someone who wanted to join my profession that has sickle cell is: NEVER GIVE UP!! It may take you a LONG time to take all your required classes and prerequisites to get into the nursing program but KEEP GOING……NEVER STOP!! Has sickle cell limited any areas of your life? I originally was going for my RN degree and had got accepted into North Carolina University but I had got pregnant with my son & my mom and other family members wanted me to keep the baby and not have an abortion because they for 1) didn’t want me to go out of state to school and 2) they were worried about if I would ever be able to have another child with my illness. I was 21 at the time and had been on my own the past four years since graduating high school and had did the local community college because my mom WOULDN’T allow me (or sign the papers) to go out of state to Grambling University!! Smh…nothing but disappointments on my end because I didn’t use my sickle cell as a crutch and I didn’t like other people using it for theirs, so I taught her a lesson and got my OWN place and I went to community college cause I didn’t want to go to the local University (Cal State Long Beach) and setup my plan to transfer to a four yr University. Now it took me 4 yrs at a 2 yr city college to COMPLETE everything for transferring to a big University because I kept getting sick alot but it was worth it. However, when I decided to have my baby I stayed at the local community college and changed my major of becoming an RN to just doing the LVN program in 1 yr because I had this newborn baby and I had to be mindful of my sickle cell and how often I got sick and had a crisis. What ended up happening was I went into the LVN program of August 2002, my son was 6 weeks old, and by December almost the end of the 1st semester they DROPPED me because I had 2 crisis in the month of November and had missed a lot of school & in the nursing program YOU ARE NOT ALLOWED TO MISS DAYS no matter what your illness is!! So, I had to wait until the following October of 2003 to go back into it because I did complete the 1st quarter (9 weeks). I pushed myself to make it through this time and graduate in May of 2004 right before my son’s 2nd birthday to get my LVN certificate……and IT WORKED!! Yes I did get sick but it happened on Christmas break of 2003 and when we came back for Spring semester of 2004 my dean told me that if I was not back in class that they would have to drop me again!! Forget that crap, I notified my doctor and nurse practitioner ASAP and told them that they better had released me today or I was gonna go AMA (against medical advice), I was still really sick but I was DETERMINED!! They released me and for the next couple of weeks I was still very sick but I pushed and forced myself to get up every day and make it to my classes and get this last semester over with because I was almost done and in the nursing program you only have one chance of being dropped and able to plead your case for reinstatement. I was NOT going to be looked at as a FAILURE when I have ALWAYS tried to look past my illness and its limitations. Needless to say it all worked out and I graduated from my LVN nursing program on May 24, 2004!! I gave myself a few months to regroup and by August I started studying for my NCLEX-PN state boards and took my test on January 6, 2005 and passed on the 1st time!! I had many obstacles during this time but I MADE IT and NEVER GAVE UP!! My dream was to be a RN but I just couldn’t get back into the swing of things and put myself and my body through all the stress of completing another year, so I began to look at my situation, thank GOD and take my BLESSINGS for what it was: even though I was not able to go back and do the RN program, I thanked him for ALLOWING me to be able to COMPLETE my LVN program even though I had to do it twice. He gave me strength to still become a nurse of importance on some levels of what a RN do with the illness that I have and live daily with. When you do reach obstacles in your life, what helps you through it? I have learned to not stress myself over what is done, what has happened or what is meant to be. I know it’s easier said than done but STRESSING is primarily what causes me to have my sickle cell crisis & now that I’m 31 years old, I still stress, but not as often as I use to when I was 23 and 24, lol. Another thing is, I always think how I am lucky to be in the situation that I am in and grateful for what I do have. Do you have regular pain (more than 2x a week)? How do you cope with this when you are working? No I don’t have regular where I have pain more than 2x a week, but I do have SS and even though now I haven’t had a crisis in 6 months, which is a record for me, I do tend to have crisis that require hospitalizations every 3 months. I do have some crisis that I can manage & maintain at home and aren’t that severe. What is your daily medication regimen and what medications do you take when you are in pain? My daily medication regimen is Hydroxyurea (hydrea) & folic acid, but I have been taking them since I was 12 years old & I stopped taking them recently up to a year ago because I noticed that whether I took them or not I still got sick the same and very often, but I will take them when I’m in the hospital under hospitalization. When I was 15 my doctor’s put me on the Depovera shot because they noticed that me and my friends with sickle cell use to come in the hospital during our menstrual cycles and the loss of blood interfered with our sickling and need for blood transfusions, so the shot would regulate our cycles and eventually stop them. I stayed on this until I was 20 and chose to stop taking it on my own and that’s how I became pregnant with my son a year later, but SOON after I had him I began getting it again. For pain I take Dilaudid and Flexeril. How has sickle cell affected your personal life? For example, are you in a relationship, do you have kids, etc. Sickle cell has affected my personal life because now that I’m 31, I see that most men that I have run into can’t handle it. When I meet a guy I tell him off the back that I have sickle cell anemia. When I go into the hospital, this is my time to test him and see if he visits me on his own without me having to ask him and also my time to see if he still calls me when I’m not feeling good, IF NOT…….I 86 him with the quickness and never talk to him again because I feel like if you like a person that much and are really interested in them, when they get sick like this you are going to be there for them rain or shine. Fortunately, I have met only 4 guys who I have all considered my boyfriend’s once upon a time in my life to be there for me when this situation of me being sick came up and they were: my jr high/high school boyfriend of 2 yrs, my college boyfriend of 1 yr, my son’s father, and my recent ex boyfriend from 2 yrs ago. These 4 men and I have all gone our separate ways now, but I will ALWAYS remember them and the time they spent with me during these most difficult situations and they will ALWAYS have a special place in my heart. If you do have kids, please describe in as much detail as possible, how your pregnancy, labor and delivery was. Do any of your kids have sickle cell disease? I only have 1 son, he is 9 years old and he DOES NOT have sickle cell disease, he has the trait. I was very educated on my illness by the age of 7 and I knew that if I ever had a kid, I needed to get their father’s blood tested while I was pregnant to see if he was a carrier of the trait or had normal hemoglobin. My son’s father did not want to do this at first so I scheduled me an appointment at the clinic with my gynecologist referral to have an abortion, but when he realized that I was serious and had a date planned and scheduled for the surgery, he ended up going in with me to my doctor’s office and letting them draw his blood, in the end he only had blood type O+ and had a normal hemoglobin. So I continued with the pregnancy and my doctor’s had me seeing a high risk ob/gyn throughout my pregnancy to make sure my 9 months of pregnancy were ok and easy going. During this time I only had 1 sickle cell crisis and I was 8 months pregnant, so I had went 8 months without a crisis and they ended up giving me a PICC line because I was a hard stick and had no veins & they wanted to have an easy IV access for me when I came in to deliver my baby the following month. My labor was WONDERFUL!! The doctors ended up letting me drink apple juice the whole time, not limiting me to those typical ice chips everyone else is obligated and entitled too, and I gave birth vaginally with an epidural because they didn’t want my body to go into distress or trauma from the delivery and have a sickle cell crisis so my ob/gyn also had staff on alert for if I needed a blood transfusion immediately after delivery and other pain meds. She also told me that my delivery was great and that I had actually bleed less than the normal woman and required no stitches or anything!! I gave birth to a healthy 6lbs 8oz little boy and they IMMEDIATELY did a “sickledex” test on him to make sure that he was ONLY born with sickle cell trait and not the disease. Looking at the 14 year old version of yourself, what would you tell him or her if you could…? Looking at the 14 year old version of myself, I would tell them that I know it gets hard and it’s frustrating at times but you are very lucky to have the advancements in dealing with this disease at your age now because when I was your age we didn’t have all the advanced technology and medicine that we do now. They were all a “work in progress” in my day and me and my friends were experiments for knowledge known today and those experiments worked and now you have the capabilities to keep informed via internet. Shoot I didn’t know internet existed until I was 16 years old searching for colleges, lol.
Just be patient with yourself, know your body and how it responds to being sick, don’t use your sickle cell as a crutch & don’t allow anyone else to use it as theirs!! Don’t tell yourself that you can’t do this or you can’t do that because you are sick, it may take you a little bit longer to FINISH your goals because of your delays and bouts in the hospital and not feeling good but make sure you finish. Never start something that you can’t complete, because you are just as normal as the next person without sickle cell anemia and can do ANYTHING you put your mind to.
Is there anything else that you would want to tell other sickle cell warriors? I’m 31 years old now living with this disease and I am very proud of what I have accomplished. I have had many trials & tribulations with mine far as having the asvascular necrosis, but after being diagnosed with this in the 8th grade at the age of 13 due to my sickle cell, I can finally say that they allowed me to get a hip transplant back in October on the 14th of 2010 after 17 years of walking like that and being in pain. A year later I can say that I enjoy living my life as an adult who can walk normal again and be cured of this, but I know sickling can affect another joint in my body and my start my necrosis somewhere else. I am now recovering from having open heart surgery November 16, 2011 due to some doctor leaving a guide wire in my body from the use of a central line back in 2004 and it caused me to have 3 blood clots on my heart, an increased heart rate and an infection in my bloodline. This malpractice of a physician 8 yrs ago has caused me to have a surgery that someone like me has not caused due to their illness or habits of smoking or using illicit drugs and alcohol because I do NOTHING of this sort. I have gone through the storm and have had times when I thought I was approaching DEATH, but I never gave up and I maintained to try and stay strong through it all!! Thank you for reading my story, I hope it was touching and can give other sickle cell warriors admiration for wanting to prosper with this disease and know that you can overcome all obstacles while being sick and living with Sickle Cell Disease!!
Sickle Cell Free, Part 4: Life After Stem Cell Transplant