What is Scleroderma?
Scleroderma is a rare, debilitating autoimmune disease for which there is NO CURE. Scleroderma is often progressive and sometimes, fatal. It affects every age and gender and it’s neither preventable nor contagious. It confuses the best in the medical field by making it difficult to diagnose. Scleroderma attacks the Circulatory System, cutting off blood flow to extremities, resulting in Gangrene and amputation. It affects the Gastrointestinal Tract, Heart, Kidneys, Lungs, and the Esophagus. Scleroderma causes hardening, thickening, and tightening of the skin which oftentimes, causes devastating results to one’s facial appearance and one’s mobility.
PRELUDE: Shortly before my mom’s surgery, (amputation of her legs above the knees), I called Karen, my childhood friend, who has been coding invoices for hospitals for over 20 years. Karen asked, “What hospital was she in?” I told her the name of the hospital, and she said, “Get her out of that hospital, ASAP!” She seemed frantic! She also said, “Get her tested for (MRSA) A.S.A.P.” After I hung up the phone, prior to my mom’s surgery, I asked the first nurse that came into my mom’s room to test her for (MRSA). The test came back negative.
(MRSA) stands for Methicillin-resistant Staphylococcus aureus (MRSA) a bacterium that causes infections in different parts of the body. It’s tougher to treat than most strains of staphylococcus aureus — or staph — because it’s resistant to some commonly used antibiotics.)
I found myself between a rock and a hard place. I didn’t mention Karen’s statement to my family. I knew my family was not going to allow me to move her, and if they did allow it, where would she go? The insurance company calls the shots.
After mom’s surgery, the doctor came out to give us an update; my family walked over to him, but I stayed in my seat and watched him.
As soon as I could get back to the ICU, I found my mother screaming, help me, over and over again. Her eyes were not open, but I felt in my heart that she had been tortured somehow (she went into surgery giving us a thumbs up). She should have been sleeping peacefully. I didn’t say anything about it to anyone, but I asked the nurse hanging the bag for her I.V. to begin her antibiotics A.S.A.P. The nurse said, “The doctor hasn’t put the order in yet.”
Several days after my mom’s surgery I once again, asked the nurse to test my mom for (MRSA): the test came back positive and I was beside myself!
About four days after her surgery, the doctor told us, “The infection (MRSA) had colonized and had spread throughout her body and there was nothing else they could do for her.” (MRSA) contributed to my mom’s short life span, after surgery.
My Mom’s Story
My mom’s name was Gillian Rose Heath, and she was diagnosed with Scleroderma in 1995.
Before the diagnosis, mom became very ill. She went to see her Primary Care Physician, and he referred her to a Rheumatologist, who diagnosed her with Scleroderma. He prescribed 40 mg. of Prednisone, to make her feel better. The Rheumatologist told my mom, “She could live three years, ten years, or even sixteen years with this disease.”
Mom’s early symptoms of Scleroderma were little red dots on the palms of her hands, very stiff joints, weight loss, and frailty.
When the Prednisone took effect, she was up and walking around like there was nothing wrong with her. Mom’s condition improved, so the doctor was able to gradually lower the dose of Prednisone to 5 mg. Mom functioned very well for a few years, taking only 5 mg. of Prednisone, but as the years passed, mom started to develop significant symptoms of Scleroderma.
A major artery in the right side of her neck was 70% blocked, so she had surgery to remove the blockage. The artery on the left side of her neck was only 30% blocked, and it didn’t warrant surgery. Mom also had to have surgery on one of her fingers, to remove a bone that was growing through the tip of her finger. Mom developed Reynaud’s; her fingers were stiff and turned white in the cold. She also began to develop ulcers on her fingertips and began to have severe problems with her Gastrointestinal Tract.
Several months later, dad noticed mom talking but making no sense, and after a few minutes, she would be back to normal again. She had a few of those episodes. Shortly after that, mom started having seizures, so the doctor prescribed Dilantin to control the seizures. Mom was in the hospital because of the seizures, and the doctor could not get the Dilantin to the proper level in her bloodstream. The doctor was constantly taking blood samples and raising the dosage of the Dilantin.
My dad became very frustrated with the doctor, so he took a list of mom’s medications to their neighborhood Walgreens Pharmacist to seek help. After my dad explained the situation to the Pharmacist, he informed my dad that a person can’t take supplemental Calcium and Dilantin simultaneously (mom was taking Calcium). Calcium reduces the absorption of Dilantin in the bloodstream. Dad provided the doctor with this information, and the doctor made the necessary changes. The Dilantin in mom’s bloodstream reached the proper level, and the seizures stopped.
When mom got out of the hospital, she went to get her hair done. She fell down walking from the car to the beauty salon. She was in extreme pain, so an ambulance was called to take her to the ER. The technician x-rayed her hip, and the doctor said, “There were no broken bones.” Mom was released from the hospital. When mom and dad got home, mom couldn’t get out of the car. Every time my dad tried to move her, she would scream. My dad telephoned me and asked me to come over, and help him get mom out of the car and into the house.
We used a kitchen chair for her to sit on, and we put a little board with wheels under her feet. We started scooting her towards the house. It took us over an hour to get mom from the car into her bed. The next morning, my sister came to see how mom was doing, and dad told her that mom had not moved all night. My sister asked my dad to call an ambulance to take mom back to the ER.
When the ambulance arrived, they put mom on a stretcher. The pain mom experienced while being lifted onto the stretcher, triggered a grand mal seizure.
In the ER, the technician took another x-ray of her hip, and they found that mom’s hip was broken, so they scheduled mom for hip surgery.
All went well! Mom’s hip healed in no time, and she left the hospital to go to a nursing home/rehabilitation center. After she finished rehab she went home.
Several months went by and mom noticed that the big toe on her left foot was turning black. She went to a Podiatrist, who referred a surgeon.
The surgeon ordered a Doppler for her legs. The test indicated that there was very little blood circulation in both legs. The surgeon recommended amputation below the knee on her left leg, because of the black toe. The surgery was performed, and once again, mom went into rehab, and then home.
After several weeks at home, her left stump turned Gangrene, and the big toe, on her right foot started turning black. We told her surgeon and he recommended amputating both legs above the knee.
After mom’s surgery, the antibiotics were finally, administered about 30 minutes after they took her to her room. While mom was in the hospital, recuperating from the double leg amputation, she fought one infection after the other. The day after surgery, some of the stitches broke in her left stump. The surgeon would not stitch up her stump. He said he would have to cut off more of her leg in order to stitch it, and that mom couldn’t take another surgery. We were left to look, with great concern, at the unbandaged, gaping wound that wouldn’t heal. I believe she contracted (MRSA) because of the open, unbandaged wound.
After about a week, she was released to go into rehab. In rehab, mom became very ill and she was sent back to the hospital. We received a poor prognosis (her fingers were turning black). She was released from the hospital into home hospice care: I was her nurse. I administered her medications and my dad and I took care of her physically. Mom died within a week.
My mom was a fighter and very courageous throughout the whole ordeal. Scleroderma killed my mom by aggressively, attacking her Circulatory System. It cut off blood flow to her brain, legs, and arms. My Mom died on April 12, 2011, she was seventy-eight years old. She lived with Scleroderma for sixteen years.
In “Loving Memory” of my mother, and to serve patients with Scleroderma, I have created two Facebook Pages to Raise Awareness:
Help End Scleroderma †
Support Scleroderma Awareness: WE NEED A CURE
As you already know, June is Scleroderma Awareness Month; please help us: click on one of the above links and share a post with a friend or relative.
Raising Awareness of Scleroderma is one of the greatest things you can do for Scleroderma Patients.
To donate to the Scleroderma Research Foundation, please click on the following link: www.srfcure.org.
Thank you from the bottom of my heart, for taking the time to read my mom’s story.
In † Christian Love, Susan Osten
NOTE: This is a narrative of my experience and no recommendations are given or implied.