Interview With Tiara Brown: Hospital Visits & More
The Editorial Team at Sickle-Cell.com is highlighting people in the sickle cell community and their journeys in a series of Instagram interviews. We talked to Tiara Brown, aka @tee_2017, about her sickle cell story and what it means to be an sickle cell warrior. Read part 1 of her interview.
Experience with health care professionals
Editorial:What is your experience with healthcare providers (primary care and ER)?
Tiara: Ever since I was born, from what I know, I had, and still have great health providers.
*Side note: I don’t like taking hard drugs, they make me feel weird and not in control, so I try to stay away from all of them if I can. The reason I don’t like to take them is because I had a bad reaction to one of them. I don’t like how it makes me feel and when the pain medication wears off it's like the pain never went away.*
My family and I moved from Miami to 2 hours north when I was 10 years old. My parents bought a model home that we only lived in for 18 months because it was contaminated with defective drywall. Two of my family members got sick, my dad and me. My family must wear glasses now due to the fumes that the house gave off. The smell was like someone had left rotten eggs mixed with new house paint. It was just horrible.
The drywall contaminated my sister's and my teddy bears. We had 300+ bears from previous hospital stays, carnivals, and gifts from family members. Both of our closet shelves were full of teddy bears. We will never forget having to put our bears in trash bags. The drywall had made some of our silver jewelry, gold and copper black and corroded. The smell was in any soft fabric items like our clothes, beds, couches, and in our hair.
The city advised my parents that we should pack our car with anything that wasn’t contaminated, so basically just ourselves and a few things we needed. We had moved to this very tiny apartment that ended up having mold (that’s a whole other story).
Trips to many doctor's offices
The first incident that I know of is when my body was covered in this itchy, peeling skin and hives due to the drywall. It had looked like something from a horror movie. I went to school with long sleeves and jeans that went over my sneakers.
I was already so self-aware about having SCD. We went to three hospitals, the first hospital said it was strep throat and gave me antibiotics that didn’t work. The second hospital said it was a sickle cell crisis and from experience, my mom and I just knew that this wasn’t a sickle cell crisis.
Again, they gave me additional medication, and I went home. In the last hospital (St. Mary’s Children Hospital in West Palm Beach) the nurses and doctors were super helpful they did many tests and blood work on me. They didn’t know what was going on with me, so they put me in isolation for about 9 days and diagnosed me with possible Chinese Drywall Poisoning.
While I was there my family had to dress in isolation gowns and gloves even though we were all exposed to the drywall. I got it the worst. I saw the child life specialist and the therapy dogs were so friendly. I still remember one dog, his name was Charlie and he was so sweet.
Acute chest syndrome
The second time, I had acute chest syndrome and got horrible pain. The hospital took their sweet time admitting me to a room so they gave me a bed by the wall in the middle of the hallway where everyone could see me.
One of the nurses had Dilaudid which we believe was too much. She kept pushing it in again and again and not giving it time to work. It was a lot of medication, especially for someone who was not used to taking so much pain medication.
I felt like I was dying and screaming “enough”. They proceeded to ask me continuously if I wanted a port because my veins are very thin for an IV while I was going in and out of consciousness. For a split second, I remember my aunt had one for cancer; I kept saying "no" and my dad finally told them "NO". They decided that I needed to be treated at a different hospital, so they transferred me to another hospital because they truly didn’t know how to handle a patient with SCD, from my point of view. My parents and I truly feel as if they overdosed me.
The next experience I had was close to the end of the summer in 2020. I never had a gallbladder problem. I know as sickle cell patients; we need our gallbladder and spleen taken out due to all the medications we must take. I had some buttery popcorn and it upset my stomach, so I went to the bathroom.
Getting to the hospital
That went downhill from feeling like my inside was going to explode to feeling hot and nauseous. I was pleading and crying for someone to help me. While my mom was getting me dressed for the hospital, my dad was calling 911. The ambulance had come and they were very unprofessional and rude.
They put me on the stretcher and told me to calm down in a somewhat aggressive way; I was reaching for mom because she is the one who would ride with me while my dad and sister followed behind the ambulance as we usually do. They continued to say that there would be no visitors allowed in the hospital due to the pandemic. I said "no," I would rather have my mom take me to the hospital and she did. It felt like forever to get to the hospital, but we eventually made it.
Advocating for myself
I did advocate for myself once I got into a room, they gave me fluids, medications, and the results showed they were probably gallstones. The nurse told me that I would have to have my gallbladder removed and would need to stay overnight. I had a meltdown and it all hit me; it had come out of nowhere and I can’t control it.
I said "no" because I was too afraid to stay without my parents. The nurses told my mom that we would have to follow up with a GI doctor and gave me pills to take until we went to a GI doctor. The GI doctor gave me the result of what could be either constipation or a stomach ulcer. Thank God it wasn’t a stomach ulcer and once again I broke down in the car because I just had enough of it. He said to change my diet and exercise. From there I have been exercising, watching what I eat, and changing my diet.
To other sickle cell warriors...
Editorial:Any advice for how to cope with healing setbacks and the tough days with SCD?
Tiara: Advice for setbacks and tough days, is talking to God because he truly understands, reading the bible while going through tough times can make you feel 10 times better, at least it does for me.
I know that Jesus went through the same thing in the aspect of having tough days. Also, drawing or journaling about your emotions, crocheting, or knitting can be very therapeutic. Yoga and meditation help me connect to my inner self by letting all emotions just flow is another way to cope with this condition.
Manifesting good days
Manifesting that you would have a good day before getting out of bed is another helpful way to cope. When feeling unproductive and not at your best try sitting outside soaking up the sun, the sun can boost your mood and make you feel a lot better. Listening to music or watching something funny can help a ton. Hydrating and eating fruits and vegetables can give us the proper nutrients and oxygen that our body needs. And if you just can’t do any of those things, then talking to family or friends is a great stress reliever.
We're not alone
I just hope that anyone who is reading this knows that you are not alone in this. I thought for a long time that I was dealing with sickle cell by myself and sometimes I still think that way, but there are people that are willing to listen, understand, and help as best they know how.
As a community we can overcome this by speaking out, standing up, educating others for sickle cell, and advocating for those of us with the disease. That is the only way sickle cell may become a more known and discussed topic amongst family, friends/peers, doctors, educators, and the community. Speaking up about SCD may take away the stereotyping that those of us with sickle cell are drug seekers, lazy, or want pity.
Do you have a good relationship with your doctor?