PATIENT STORY A True Miracle

I have always had minor health issues. I was 13 when I started to notice that my toes felt numb and were drained of color. It was uncomfortable, but I ignored it. They then started turning purple and would be so cold. I would walk around on my tippy toes trying to regain feeling in them.

The pain got worse and I went to my pediatrician. He told me I had Raynaud’s. He said I just needed to keep myself warm and that would make it better. After many months, it was so bad I went back to my doctor to ask if there was anything else I could do. He then noticed what I thought were “weird holes” on the tips of my fingers and said he wanted me to see a Rheumatologist at the Children’s Hospital. I wasn’t that concerned because I had no idea that there were diseases associated with Raynaud’s. I decided to look on the internet and found that there were many diseases that were associated with Raynaud’s. I started to get scared. A month after my first Rheumatologist appointment, I called about my test results. I knew that there was something wrong when they said they shouldn’t talk about it over the phone. They got me in the office within a few days. They told me that I had abnormal test re -

By Brittney Bailey

sults, and they thought I had lupus.

I didn’t know what to think, I had read horror stories online before even going in. Organ failure, short life span, death. I had just turned 16. I felt so overwhelmed.

I was eventually diagnosed with IST (inappropriate sinus tachycardia), POTS (postural orthostatic tachycardia syndrome), MCTD (mixed connective tissue disease), GERD (gastroesophageal reflux disease), lupus, Sjogrens, myositis, vasculitis, Raynaud’s, fibromyalgia, hypothyroidism, and interstitial lung disease by the time I was 27 years old. Then the world fell apart in 2020 from Covid, and I didn’t go to the doctor for a long time.

I remember my boss getting upset with me because I was taking long breaks having to use the restroom, but I was working from home so it seemed like I was slacking and not working as I should be. I had stomach issues for a long time and chalked it up to my lupus, GERD, side effects from my medications, and honestly not the healthiest diet. However, the problems were getting worse. They were affecting my ability to work. They were an interruption to my daily life. There was more than one occasion where I had unexpectedly lost control of my bowels and yet I glossed over it like it wasn’t a real problem. I knew I was sick; I knew that I probably wouldn’t get any answers from the doctor.

So I ignored it, put it on the back burner. Well 2 days after my 30th birthday, I woke up with horrible pain and a reality check. This was an emergency. It woke me up out of a dead sleep. I had a CT scan done that day and there was a mass in my abdomen. It was about the size of a ping pong ball and was wrapped up in blood vessels. Within a week I’d had a biopsy done, and it was confirmed that I had pancreatic neuroendocrine cancer. I met with the best surgical oncologist in the area, and he told me I needed to have a surgery called a Whipple procedure. This is a complicated surgery where they remove part of the stomach, pancreas, small intestine, bile duct, and the whole gallbladder (and obviously the cancerous tumor).

My mom said, “Her surgeon told us that everything should go smoothly with no complications, the only concern was possibly the steroid use. He said he would worry about that if and when it was a problem.” I was prepared for a 2-week hospi- tal stay starting November 22nd, the day of my surgery.

Some of this information was passed to me from my family as I was very quickly too sick to completely understand what was going on. Several days after the surgery I got very sick, very fast. With a Whipple they have to cut out parts of all the organs around the cancer, and then put them back together with the small intestine. These new connections were all leaking into my abdomen. I had taken corticosteroids for over 10 years almost continuously, in varying dosages, to treat my lupus.

I knew I had a lowered immune system response and risk of bone and tooth damage, but I did not realize the damage it could do to your organs. The steroids had to be stopped immediately after surgery which left me wide open for a lupus flare. My surgeon said my organs were like “wet tissue paper” and everything was falling apart as he was trying to put me back together. I had multiple drainage tubes trying to collect the excess fluids, but it wasn’t enough. I was put into a medically induced coma for 2 weeks. My parents said I was left surgically open during this time because they wouldn’t clear the fluid and infection that set in. They were going in every few days and doing a procedure to help clean me out. I woke up just before Christmas confused and in pain.

My body continued to struggle with sepsis, and I kept getting overcome by infection after infection. I was on a breathing tube. I was given a tracheotomy. My blood pressure and heart rate were all over the place. At one point my heart was stopping and they had to put in a pacemaker. The pain was indescribable. I couldn’t eat. I couldn’t drink. I was getting TPN, which is nutrition given through an IV. They would try to give me tube feeds through an NG tube and the feeds would spill right back out of my body through a fistula that had formed.

I was in an ICU bed until March 2023, unable to get up and stand. I developed foot drop on top of my mounting medical problems. My feet began to curl in. I was moved to the Drake Center for Post Acute Care. I received physical and occupational therapy there almost every day until I had my next big surgery. On September 7th, my surgeon and his team opened me back up. They were expecting to be able to remove some of my drainage tubes and just fix the connections that did not work during my first surgery 10 months before.

There was so much scar tissue. My mom said it took 4 or 5 hours just to get through it. They later discovered my organs had all become stuck together and stuck to my skin. The protective lining between my outer skin and intestinal lining was gone. They had to call in an extra surgeon to line my insides with a mesh material to keep it from happening again. My surgery took about 12 hours when they expected it to be done in 5 hours.

My parents recall meeting my surgeon after the surgery saying, “After the second surgery, Dr. Ahmad came out and told us it didn’t go as planned. Her organs were all stuck together.” My mom said, “I will never forget him saying that he had to at least give her a chance. A chance? This was my daughter he was talking about. It was the worst thing I had ever heard.”

I finally began to get better. I was able to eat small amounts of food again without throwing up. I was able to get rid of my feeding tube and TPN. The last big hurdle was my feet. They were contracted, so I was not able to put any weight on them. I had surgery on both ankles on December 2nd and it was much harder than I imagined after everything I’d already been through. Learning to walk again after not standing in over a year was grueling. I went to a skilled nursing facility that was meant to help me progress and go home, but they were negligent in my care, and I became septic again. I was rushed back to the ICU. Honestly, the next couple of months are a blur to me. I was hallucinating and very sick.

Finally, I cleared the infections. As if all my prayers were answered, all at once I started to make progress. I was standing. I was walking. I was learning how to go up and down steps again. In a matter of weeks, I went from having my second tracheotomy to being able to walk short distances with a walker.

Suddenly I was going home, after 556 days which is 1 year, 6 months, and 9 days. I’m continuing to make progress at home with occupational and physical therapy. I may have lost a year and a half of my life to being stuck in the hospital because of cancer, but I can promise you I’m going to live the rest of my life to the fullest. We are never guaranteed anything so we must do the most that we can, while we can. I feel truly blessed to be here today.

Reflecting on this ordeal my mom said “Brittney was so brave throughout this entire horrible journey. I never saw her cry, not once, although on many visits I would hide my tears. There were a few times we weren’t sure if she would make it. With faith and prayers, God got her through this. I will be forever grateful.”