Valley sickle cell survivors share harrowing stories

By Richard Smith
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It was a week and a day before Christmas and Nikita Toney thought she was going to die in a Mesa hospital from a mistreated sickle cell crisis.

A day later, during the Dec. 18, 2024, Zoom meeting of the Glendale Sickle Cell Support Group, Toney said this was the worst pain she had ever felt. Coming from Toney, 50, who also suffered a stroke, a pulmonary embolism and a transient ischemic attack, it was quite a statement.

“The doctor ... I was lucky enough to grab him and get a hold of him and say, ‘My hip hurts like no other pain I’ve had,” Toney said during the Dec. 18 meeting. “He said he was going to do a CAT scan. They actually saw evidence that my hip has something called a vascular necrosis. Which means I’m sickling all the way down to the bone.”

The issue was one of several highlighted during a monthly meeting of the support group, where those who have the condition gather to discuss issues ranging from treatment to prevention to pain management.

Sickle cell disease, also called sickle cell anemia, is a inherited blood disorder that affects the main protein that carries oxygen in red blood cells. While normal red blood cells are disc-shaped, people with sickle cell disease have those cells shaped like a crescent or “sickle,” which can form blocks to blood flow to various parts of the body and induce extreme pain.

That is what happened to Toney, who said she was unsure she would make it through the night of Dec. 17. She had to communicate with doctors by sending a text message to a computer.

Already in severe pain and unsure whether to take a potent painkiller because a previous severe reaction to it, her long night became worse because of a miscommunication.

“The doctor decided to move me up from morphine — which is what I normally take — to a Dilaudid. I was rolling around in pain and we were trying to see if I could take the Dilaudid. He gave me a tiny little starter dose to make certain I was not allergic to it. All he heard the nurse say was ‘Ms. Toney is OK.’ She was saying as far as having an allergic reaction, not she’s OK as far as that’s the correct dosage for her. So it got lost in translation and he left,” Toney said.

She asked a nurse to try to tell a doctor to give her the right dose. The nurse said she couldn’t do that because a doctor has to write that order.

The doctor said she was not going to change another doctor’s order. Toney said by this point, three nurses were trying to explain the situation to the doctor.

“The nurses told the doctor she doesn’t have to change it, you just have to believe what we say and see this was flagged. They told her my other levels were going crazy because she’s in so much pain. Nikita could possibly have a stroke because of her blood pressure,” Toney said. “They asked her to write a prescription. She said, ‘Well, if she does go into a stroke, that’s not on me. That’s on the morning doctor. They should have done their job.’ So I sat here in this bed and was in so much pain I was screaming all night long. That was inhumane.”

Toney received the appropriate dose the morning of Dec. 18 and doctors asked her some questions she found unusual.

Every hospital stay, Toney said, feels like a battle with a doctor or nurse who believes she’s exaggerating her condition to gain access to powerful drugs. On Dec. 17, she received 0.025 of a milligram of Dilaudid originally.

By Dec. 18, Toney was alternating 1 milligram with 0.5 milligrams. Her nurse on Dec. 18 was one she was familiar with from a past hospital visit.

Attendees of the Dec. 18 Zoom call and in person at Mount Zion Prayer Ministries International Church reacted with a mixture of shock, anger and resignation. Toney is far from the only person suffering from sickle cell with a health care horror story or two.

“What you bring to the table is that we have to do something about — advocacy. I do not know what we are going to do. But here is another piece,” said Rev. Marcia Garland, who founded the Glendale nonprofit. “This is repulsive. Not even animals are treated like this.”

The youngest member of the group, 15-year-old Caleb Afanou, of Tolleson, spent time talking during the Sept. 24 meeting — which marked the group’s one year anniversary. He was nearly a week into his own recovery from a sickle cell crisis.

Caleb and his father, Pastor Kouami Afanou, hoped to meet with the rest of the group for the Relay 4 Sickle Cell Sept. 20 at Paradise Valley Community College in Phoenix, before the pain became too intense.

Teen sickle cell warrior Caleb Afanou, from Tolleson, left, his father, Kuoami Afanou, and Vitalant Senior Account Manager Katrina Eaton, right, smile during the Dec. 16, 2024 meeting of a Glendale-based sickle cell support group at Mount Zion Prayer Ministries International Church. (Independent Newsmedia/Richard Smith)

Caleb was feeling much better by the time of the Sept. 24 meeting.

“Last week was hard. We have been here twice but with communication and all the protocols we had to follow the pain went down — I’d say — Thursday of last week. The crisis was he had pain in all of his limbs,” Kouami Afanou said Sept. 24. “He couldn’t walk. It was serious. He’s doing great.”

The Afanou family trusts Phoenix Children’s Hospital with Caleb’s care. They check into the emergency room and Caleb goes straight to a room.

He is administered needed medication, essentially, on an outpatient basis. Kouami said Caleb was diagnosed with sickle cell close to his first birthday.

“When he’s in this severe crisis and needs a high dose of painkillers, we take him there for two or probably three hours. Then we bring him back home,” Kouami Afanou said. “Because we don’t want him to stay for days.”

Toney said the PCH setup is wonderful and different than what she has experienced as an adult.

She had a worse experience in April at the same hospital near her home.

Toney does not own a car and during most days she is caring for her son who has autism, so getting to a different hospital is difficult.

She said her medical doctor has a good preventative care regimen to avoid a crisis. But when Toney is in the hospital, there is a disconnect.

Gov. Katie Hobbs issued a proclamation stating September is recognized in Arizona as Sickle Cell Awareness Month. Garland said it was the first time she has seen statewide acknowledgment of the disorder.

A September event in Tucson helped dispel the myth that black and brown people do not donate blood. More than 50 people signed up, and at least 38 donations were successful and 45 units of blood were collected.

More than 20 donations at the Relay 4 Sickle Cell were successful.

Toney said she learned how to better advocate for herself at a workshop in September.

As October begins and Sickle Cell Awareness Month ends, action and advocacy continue to be the Glendale group’s themes, That includes coming up with a transportation plan to get Toney to a different hospital.

Sickle cell is rare, Toney said, so many ER doctors do not see it as often and do not know how to treat or talk to patients. Average life expectancy for sickle cell patients is 52.

“There’s maybe a page that they had on sickle cell in college. So when you come in they don’t understand it as much and they don’t look at you in a favorable light. If you come in, they think you’re a drug seeker. Meanwhile, I feel like I’m having labor pains,” Toney said.

Richard Smith
Senior News Editor | Glendale & West Valley Preps

rsmith@iniusa.org

Richard Smith has been with Independent Newsmedia since 2016, and worked at a Sun City-based news outfit covering the Northwest Valley for 22 consecutive years.

An NAU alum and lifelong Arizona resident, Richard began as a copy editor and page designer at Surprise Today and the Daily News-Sun, then rekindled his love of sports writing by taking the reins on West Valley Preps in 2008.

For most of the mid-2010s he was the Surprise editor and West Valley Preps reporter. Now he’s the West Valley Preps Editor and Surprise Associate Editor.

As COVID restrictions slowly lift, Richard is cautiously optimistic he will visit book stores, football fields and gyms again this fall.