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 or contagious. It confuses the best of 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. Scleroderma steals people’s freedom, jobs, friends, families, and lives.
Mom’s Battle With Scleroderma, by Susan Osten
PRELUDE: I have a childhood friend, who has been coding invoices for hospitals for years. The day of my mother’s surgery, she was working in a hospital in Pasadena, which was not too far away from the hospital my mom was in. When I called her and told her my mom was having her legs amputated shortly, she asked me, “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 as soon as possible.” After I hung up the phone, I asked the first nurse that came into my mom’s room to test her for MRSA. The test was negative.
(MRSA) stands for Methicillin-resistant Staphylococcus aureus ( MRSA) is 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. My family was not going to allow me to move her, and if they did allow me to move her, where would she go? The insurance company calls the shots, and they would have to approve the move. After my mom’s surgery, I told the nurse in ICU to start the antibiotics as soon as possible. I also told her that my mom has Scleroderma and she easily contracts infections. The nurse said to me, “The doctor hasn’t put the order in yet.”
My mom tested positive for MRSA, several days after surgery. I was beside myself. 😦
About four days after her surgery, the doctor told us that, “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 early death.
My mom’s name was Gillian Rose Heath. 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 that, “She could live three years, ten years, or even sixteen years with this disease.”
Some of 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 decrease 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 developed 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.
Her fingers were stiff and turned white in the cold. She began to develop ulcers on her finger tips, and she began to have severe problems with her Gastrointestinal Tract.
After a month or two, dad noticed mom talking, but making no sense, and after a few minutes, she would be back to normal. She had a few of those episodes. She then began to have seizures, so the doctor prescribed Dilanton to control the seizures. While mom was in the hospital, the doctor could not get the Dilanton to the proper level in her bloodstream. The doctor was constantly taking blood samples, and raising the dosage of the Dilanton.
My dad became very frustrated, so he took a list of mom’s medications to their neighborhood Walgreen’s Pharmacist, to seek help. The Pharmacist was very helpful. He informed my dad that you cannot take supplemental Calcium and Dilanton at the same time because it greatly reduces the absorption of the Dilanton in the bloodstream. Dad provided the doctor with the information, and he made the necessary changes. The Dilanton in mom’s bloodstream reached the proper level. The seizures stopped.
Mom was feeling better, so 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.” She 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 her 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 she heard that mom had not moved all night. Dad called 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 severe seizure.
In the ER, the technician took another x-ray of her hip, and he found that mom’s hip was indeed, 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 she noticed that her big toe on her left foot was turning black. She went to several doctors. When all was said and done, she was referred to a surgeon.
The surgeon ordered a Doppler for her legs. The test indicated that there was no blood circulation in either leg. 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 to turn black. We consulted her surgeon, who recommended amputating both legs above the knee.
While I was in ICU with my mom, I asked the attending nurse to start the antibiotics ASAP. I told her my mom had Scleroderma, and easily contracted infections. The nurse told me the surgeon had not yet written the order. 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 amputation, she fought one infection after the other. Some of the stitches broke in her left stump, the day after surgery. The surgeon would not stitch up her leg. He said he would have to cut off more of her leg in order to stitch it. He said mom couldn’t take another surgery.
We were left to look, with great concern, at a unbandaged, gaping wound that wouldn’t heal. I believe it was during this time, mom contracted MRSA. After about four days, we were informed by the doctor that the infection (MRSA) had colonized, and had spread throughout mom’s body. The doctor said that there was nothing further they could do for her.
After about a week, she was released to go to rehab. In rehab, mom became very ill and she was sent back to the hospital. We received a poor prognosis. She was released from the hospital into home hospice care. Shortly, thereafter, she passed away.
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, her legs and arms. Mom was seventy-eight years old when she died, on April 12, 2011. She lived with Scleroderma for sixteen years.
NOTE: This is a narrative of my experience and no recommendations are given or implied.
Please help us “Raise Awareness” of Scleroderma, by sharing Help End Scleroderma’s † posts on social media, and with your family members, friends and co-workers.
The more peaple who are aware and educated about Scleroderma, helps raise our HOPES for a CURE.
On behalf of all those suffering with Scleroderma, “Thank You!”
In Christ Love and †Grace, Susan Osten