UAB affected person Katie Hooks makes use of her transformational story to unfold consciousness of scleroderma.
(Photograph offered by Brent Patterson)Katie Hooks, 23, was dwelling a fairly regular life, till the morning she wakened along with her face swollen shut. Quickly after, she was on a ventilator on the College of Alabama at Birmingham, unable to talk or transfer.

Hooks’ journey to UAB Hospital started with what she thought was simply an allergic response. She took some allergy drugs to attempt to mitigate the swelling of her face. However as the times went on, the swelling progressed to the remainder of her physique. She couldn’t breathe, her physique grew to become stiff, and inside months, she had utterly misplaced her mobility and independence.

One evening, Hooks wakened experiencing shortness of breath and was transported to UAB Hospital. She was rapidly positioned on a BPAP machine, a kind of ventilator to assist push air into her lungs and deal with continual circumstances that have an effect on respiratory. Inside hours, physicians at UAB identified her with scleroderma and systemic lupus overlap with related myositis.

Scleroderma is an autoimmune illness that causes the pores and skin to develop into infected and swollen, usually resulting in hardening on account of a buildup of scar tissue. Inner organs akin to the center, blood vessels, lungs, intestinal tract and kidneys will also be broken. Lupus is an autoimmune illness that damages tissue in lots of components of the physique, together with pores and skin, joints, lungs and kidneys. Myositis, when it happens in these issues, causes muscle tissues to develop into irritated and infected, finally resulting in the muscle tissues breaking down and changing into weak.

“I actually felt like I used to be slowly dying …”

“By the point I used to be admitted to UAB, I had been struggling to breathe for months,” Hooks mentioned. “I actually felt like I used to be slowly dying, however I had satisfied myself that I used to be overthinking this and that nothing was flawed. I simply keep in mind being admitted to UAB, closing my eyes and saying ‘God, if that is my time, please take me. I’m able to go.’”

Katie Hooks was dwelling a fairly regular life (left), till she wakened one morning and observed her face starting to swell (proper).
(Pictures offered by Katie Hooks)4 days later, as muscle weak spot and lung irritation set in, Hooks was positioned on a ventilator. Though medical doctors can’t pinpoint the precise explanation for this flare-up, they imagine the stress on her physique after having COVID-19 in August of 2020, mixed along with her heavy workload on the time, might have performed a task.

“Everybody with an autoimmune illness has a genetic predisposition,” mentioned Winn Chatham, M.D., affiliate division director for Medical Companies and director of Medical Companies for the UAB Division of Medical Immunology and Rheumatology. “For sufferers with autoimmune illnesses, violent infections like COVID-19 can unmask the illness and trigger a flare-up; however as a rule, we can’t particularly determine the triggering issue.”  

Hooks was on the ventilator for the subsequent three months. Scleroderma induced Hooks to have each systemic arterial and pulmonary arterial hypertension, which happens when the arteries develop into broken and narrowed. The hypertension broken Hooks’ kidneys, inflicting her to enter kidney failure. Whereas at UAB, medical doctors from a number of disciplines labored collectively to determine one of the best plan of action to assist her get better from this extreme flare-up.

“Katie had a extreme case that required enter from a number of specialists,” Chatham mentioned. “Well being care suppliers from a lot of UAB’s subspecialty teams got here collectively to take care of her care and assist discover a therapy plan that might permit for a clean restoration.”  

Hooks was prescribed immune-suppressing and chemotherapy medicine to assist gradual the extreme lung and muscle irritation. She was positioned on dialysis for kidney failure. After three months of therapy, she was admitted to the Particular Care Unit at UAB, the place she started the method of being weaned off the ventilator. By the point she arrived to the SCU, she was utterly motionless and wanted 24/7 help.  

Hooks’ journey to regaining her independence begins

“I keep in mind the day she came to visit to the SCU,” mentioned Brent Patterson, Particular Care Unit rehabilitation supervisor and considered one of Hooks’ bodily therapists. “We had been informed a couple of college-age feminine who was critically sick. Katie’s case was not one thing we see fairly often. Her physique had hardened to the purpose the place she couldn’t transfer something. Everybody in our unit needed to present her our all and see what occurred.”

After an extended highway to restoration, Hooks’ life is returning to what it was earlier than her flare-up. Her muscle energy, pores and skin texture and joint flexibility have returned to regular, and she or he now not requires supplemental oxygen. She’s going to begin respiratory college within the fall at Jacksonville State College with hopes to develop into a respiratory therapist at UAB at some point.
(Photograph offered by Katie Hooks)When Hooks wakened, she was scared and depressed and didn’t totally perceive what had occurred to her. As the times went on, Hooks established belief along with her care workforce and started making progress.  

Initially, Hooks’ situation made it very troublesome to determine one of the best positions to assist her enhance her mobility whereas defending her pores and skin’s integrity. Her respiratory workforce and bodily remedy workforce labored along with her suppliers to find out one of the best therapeutic interventions to assist enhance her mobility and ease flare-ups. They had been finally in a position to get her to sit down up on the facet of the mattress — a major accomplishment for Hooks.

Hooks’ mobility and her confidence continued to enhance. The SCU workers held spa and hair days for her, and they’d convey her garments and sneakers to inspire her. One pair of sneakers, specifically, served as Hooks’ motivation all through her keep at SCU. 

“Katie has her eye on this one pair of tennis sneakers and stored telling us that, as soon as she left the SCU, she was going to get this pair of sneakers,” mentioned Jeff Hatcher-Fagan, a lead occupational therapist within the SCU. “All the unit informed her that, if she labored with rehab and continued along with her routine, they’d get her these sneakers when she graduated, and when she graduated, that’s precisely what we did. We targeted on being there for her not solely bodily however spiritually as properly.”  

“Every step she took was like a leap of religion”

The day Hooks took her first step on her personal was a transformational second in Hooks’ journey within the SCU. 

“Every step she took was like a leap of religion,” Fagan mentioned. “When she realized that she might take a step on her personal, that’s all it took to inspire her to push by way of the remainder of her remedy. By means of the Particular Care Unit, we might collectively get collectively and cheer her on one step at a time. It’s all about crawling earlier than you stroll. She took a few steps ahead and a few steps again; however in time, she was in a position to get higher.”  

By means of this expertise, Hooks acknowledged her potential to do the issues she needed to do and determined to pursue a profession within the medical area. After an extended highway to restoration, Hooks’ life is returning to what it was earlier than her flare-up. Her muscle energy, pores and skin texture and joint flexibility have returned to regular, and she or he now not requires supplemental oxygen. She’s going to begin respiratory college within the fall at Jacksonville State College with hopes to develop into a respiratory therapist at UAB at some point.

“I wish to use my expertise to assist others in an analogous state of affairs,” Hooks mentioned. “If I didn’t have the folks within the SCU persevering with to encourage me daily, I have no idea the place I might be at the moment. I wish to assist those that could also be going by way of an analogous state of affairs. At some point, they’ll look again and see how far they made it, and the entire problem will likely be value it.”

“Among the best components about Katie’s restoration was not solely seeing her regain her independence, however it was additionally discovering out that, by way of her sickness, she discovered her function and her means,” Patterson mentioned. “One factor we needed her to take from this expertise is that she will use all the things she has been by way of to raise others and be there for others like we had been in a position to be there for her. She created a brand new chapter right here. She discovered how you can reinvent herself by way of this course of, and it was really an honor to get to stroll along with her by way of her restoration.”