Sweet Sara's Long Journey
Hi, my name is Amanda Headrick Kelley. I am trying to raise funds to help Sara and her son get back on their feet after some very challenging years with medical issues. Sara is a single mom with a 14- year-old son who has had to depend on her family's support and care because she has had numerous health episodes since 2012. The last couple of years has been the most difficult. The following is her story.
"On January 5, 2012, I went home after my shift at the retail store I worked at about 3 p.m. and laid down to take a nap. I woke up with the worst abdominal pain I had ever had. My husband took me to an urgent care facility, and on the way, I called my parents to meet me there; they diagnosed me with acute pancreatitis. I needed to be admitted, but due to insurance coverage, I had to be transported by ambulance to another hospital across town. The protocol back then for treating pancreatitis was not eating or drinking anything by mouth for several days until the pancreas calmed down. I spent a total of seven days in the hospital at that time. Unfortunately, I lost my temporary job for missing so much time. This was the beginning of my journey, which lasted a decade. I was 29 years old, married with a three-year-old son.
The doctors had no clue what caused acute pancreatitis but thought it might be the birth control pills I was taking. I had a challenging birth with my son, and not wanting to risk pregnancy and getting pancreatitis again, I had a procedure similar to getting your tubes tied.
All was well until I had another attack on October 12, 2016, almost five years later. They used the same treatment protocol, and I spent several days in the hospital. Then In January 2017, I had another attack. This time the doctors did more work to determine what was causing it, but our facilities in town were lacking. They referred me to a top specialist in Fort Worth to get an endoscopic ultrasound.
In March, I had an endoscopic ultrasound performed by a specialist. He concluded that I was born with pancreatic divisum. This is where the ducts from your pancreas do not form properly. The larger of my two ducts doesn’t go anywhere. The small duct had to do all of the work. He said the hole where the duct comes into the small intestine could spasm, the pancreatic enzymes back up, and pancreatitis occurs.
Over the next five years, I had fourteen more pancreatitis attacks. For eight of those times, I was admitted and stayed several days. Three times the pain was controlled by painkillers at home, one time I was already in the hospital, and two times I was sent home from the ER. The condition went from acute pancreatitis to chronic pancreatitis. I have had three ERCP’s, like an x-ray on an endoscopy under complete anesthesia, which lets the specialist look around. During this, I had a stent placed in the hole in my small intestine into the pancreatic duct by the specialist to help stop the attacks. The first time helped for quite a while, but the next two did not. My specialist decided it was time to go the surgical route.
In March 2022, I was referred to a surgeon in Fort Worth for a specific surgical procedure. She gave me a much better option. She referred me to Baylor Scott and White Hospital in Dallas.
The procedure is called total pancreatectomy with auto islet transplantation. After a bunch of lab tests, another endoscopic ultrasound, and consultations, they determined that I was a good candidate. So, I had this major surgery on July 20, 2022. Simply put, they removed my pancreas and spleen, liquified the pancreas, and extracted the cells in the pancreas that produce insulin. They then transplanted those cells into my liver, where they will function and deliver insulin. I had two nights in intensive care, was discharged from the hospital after ten days, and stayed in Dallas for another five days. I have had a one-week follow-up, a one-month follow-up, and a two-month follow-up, and I will see them again at three months, six months, and a year. The doctors say I am doing fantastic and ahead of the curve in my recovery.
Since I no longer have a pancreas, I am now insulin dependent (hopefully short-term), and I must take pancreatic enzymes with every meal for the rest of my life. But it was so worth it. I am now 40 years old and looking to get my life back on track.
Unfortunately, I still have a lot of expenses to look forward to and other “casualties” on a personal level.
I have not been able to work much with this condition, and so my parents have had to help support my son and me with living expenses, insurance premiums, and medical bills. Since November of 2021, when I had my second ERCP and stent, my son and I have been living with my parents as I recovered from all the stents and the surgery.
· My son was three when this condition started. He has never known me except as a sick person. He is fourteen now.
· In February of 2021, I started a job as a 911 operator with our local police department. I went through all the classroom training, and then, in March, on my first night live on the floor, I had a pancreatitis attack. I stayed in the hospital for seven days. I went back to work, but it was apparent that I was too far behind on my training; I was honorably discharged.
My insurance for my new job had not taken effect when I had the pancreatic attack in March, so I wound up owing about $35,000 for that stay. My parents are still helping me pay that off. I now have insurance.
· Not counting the no-insurance situation mentioned earlier, to meet insurance deductibles and coinsurance, my parents and I have paid about $53,500 for medical costs.
· I have stayed in the hospital for 51 days, not counting the surgery, which was another ten days.
· I had two endoscopic ultrasounds, three ERCP’s with stent insertion, two endoscopies to remove stents, and a pancreatectomy with auto islet transplantation.
· We have had to stay in hotel rooms for around 38 days in Dallas-Fort Worth. My parents paid about $2,500 for hotel costs when I had surgery. Fortunately, the hospital had apartments for transplant families for $50 a night, but they had to stay in a hotel when I wasn’t with them. Add to this food and gas costs. We also had travel costs every time I had to go to Fort Worth for consultations, ERCP’s, stents, etc. After the last ERCP and stent, I had to stay in the hospital for eight days. So that’s probably another $2,500. This does not count for the rest of the 38 days. We made
· The pancreatic enzymes (Creon) alone are $4,987 a month. I have insurance, but my deductible and out-of-pocket is $8,700 per year so I will hit this very quickly every year for the rest of my life. I also have insulin and diabetic supplies, which will go against the deductible.
· I have been blessed that my parents have been able to help me, but they are getting older and aren’t wealthy by any means."
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