IN-DEPTH: Fighting for your life – Leavenworth Times

Posted: August 12, 2017 at 7:44 pm

Julie Gould was heartbroken to learn that there was no cure for diffuse scleroderma, the chronic disease that she was diagnosed with in 2016.

Julie Gould was heartbroken to learn that there was no cure for diffuse scleroderma, the chronic disease that she was diagnosed with in 2016.The life-threatening auto-immune disease affects connective tissue in the body by producing too much collagen and hardening cartilage, tendons and skin.

I was depressed when I received the initial diagnosis, she said. It’s difficult to hear that you may be dead in five years time. According to the Scleroderma Foundation, A person newly diagnosed with scleroderma may feel alone and uncertain about where to turn for help. He or she may experience a number of other feelings and emotional reactions from time to time, including initial shock or disbelief, fear, anger, denial, self-blame, guilt, grief, sadness or depression. Family members may have similar feelings.

When Julie first consulted a doctor in 2015, she was concerned that she might have picked up an infectious disease, such as a mosquito-born illness, or as she described it, the worst flu ever, during a vacation to Mexico. But she was told that diabetic neuropathy was causing the pins and needles tingling in her hands and feet.

My hands and feet continued to swell and I thought I had heart failure, said Julie. I went to a cardiologist to see if that was the problem. Those tests and lab work came back normal too.When the pain and swelling became excruciating, she consulted with a rheumatologist. When diabetic neuropathy was ruled out, she was told it could be rheumatoid arthritis. Although the lab tests were within normal limits, her doctor thought the labs werent correlating yet because it was so early in diagnosis. She was given medication and told to come back in six weeks, but saw no alleviation of the pain.

When her rheumatologist told her she might have scleroderma and ordered lab work, those tests too were normal.My physical therapist thought I should go to the Mayo Clinic, said Julie. I got online and requested an appointment. Three months later at the clinic in Rochester, Minnesota, she was diagnosed with diffuse scleroderma but it was a rare type that doesnt test positive in the usual lab test. Her total diagnosis wait had been a year and eight months, and she was more than ready to begin treatment. She was given multiple medications for pain and symptom control.After diagnosis, I got online and started searching for information about scleroderma, said Julie. It was dismal. I had to step away from the computer.Current treatments for the disease are varied, but basically treat the organs being affected. When lung tissue is hardened, patients are tube-fed and given oxygen. Sometimes lung transplants are required. Some patients need gastrointestinal surgery and some have operations to decrease ulcers on their fingers, while some must have their fingers and toes amputated.

Medication for high blood pressure and chemotherapy to suppress the disease are common with the disease and stiff joints and skin can result in patients not being able to stand upright and wheelchair-bound. Physical and occupational therapy is required to save body functions.Julies mother and sister, who is a nurse, also began scouring the internet for treatments. When they read about stem cell transplant they both felt this was the answer to Julies prayers.

Overcome with depression and pain, Julie began taking an antidepressant. With the help of the drug and limitless help and support from her family, the research on transplant gave her much needed hope. When I found out about the transplant, I was scared, said Julie. I feared for my life being taken by this disease.

This disease literally affects every organ system in the body. Transplant offered a chance to stop the disease in its tracks and stop further progression and damage to my body. I had been recently diagnosed, so the doctor said I could wait until I was worse, then have the transplant at a later date. I did not wait. I already had heart, lung, GI, and musculoskeletal systems involved. This approach was proactive, not reactive. It offered me hope.To qualify for stem cell treatment a patient must be sick enough toneed it, but not so sick that they would not benefit from the procedure.

We were able to find many groups to help us learn about scleroderma, she said. Inspire and Facebook were invaluable. There were specific groups for people who had scleroderma. Groups for people who needed a stem cell transplant. Groups for people with scleroderma, who wanted, or who already had a transplant.I started to read all the testimonials. I looked at the NIH website. This was productive research. I was finding out information on how to save my life not on how I was going to die.

After Julie applied for evaluation by Dr. Richard Burt at Northwestern in Chicago, she had scores of tests, including a CT scan of her lungs, MRI of her chest, EKG, sonogram of her heart, heart cath, colonoscopy, EGD, lab work, stress tests, psychological exam, dental exam, and 24-hour urine collection.

After all the anxious waiting during almost two years of doctor visits and tests, Julie was informed that she had passed the evaluation and had been approved for stem cell transplant.I came home to mentally prepare myself, said Julie. I returned to Chicago for the mobilization phase. I received a dose of chemo overnight in the hospital to suppress my immune disease. A week later I then started to give myself injections to produce white blood cells using neupogen. This medication forces the bone marrow to put out extra white blood cells, from which stem cells originate.

After six days of injections, Julie returned to the hospital to have the stem cells removed from her blood for use at a later date. She had to stay in Chicago during this part of treatment in case she had complications from the procedure. The process was similar to dialysis, said Julie. I was at the hospital all day, 12 hours. My own stem cells had been harvested to heal me. After two weeks of rest at home in Leavenworth, Julie returned to Chicago for the transplant. And after five days of more chemo, her stem cells were returned to her body. Now we only had to wait for the transplant to work, said Julie. I stayed in the hospital until the cells engrafted and my immune system started working again. Eight days.I had been in the hospital for 16 days. The transplant is a reboot to your diseased immune system like a reboot to your computer.Julie returned to Leavenworth to rest and recover. My entire family have been tremendously supportive, she said. They offered and provided all of the help that I needed to achieve this treatment.

She is also grateful to the community of Leavenworth for reaching out to help her. They donated money for my out-of-pocket expenses, said Julie. They provided food upon my return from Chicago. I didn’t have to cook, nor did my husband for six weeks. Family cleaned my home and watched my children. I was grateful.

Social media also provided support during Julies treatment. She discovered a network of people on Facebook who had already had a transplant, or were waiting to have one. Stem cells are used to treat many auto-immune disorders like multiple sclerosis, lupus, Crohns disease, and many others, said Julie. I could pose any question to this forum and receive an answer. I started my own Facebook page to document my medical treatment so that I too could share my information. It has been wonderful to help others who are experiencing what I have been through.

Julie has just returned from her one-year checkup in Chicago and learned that the progression of the disease has stopped. Stem cell transplant has saved my life, said Julie. I am living, not merely existing.Not only has the disease been stopped in its tracks, Julie has seen physical improvements such as full motion in her shoulder, which was frozen from hardened tissue for much of the last few years. Her contracted hands are also more mobile and she has gained 40 degrees movement in some of her fingers.

I have Raynaud’s syndrome, said Julie. It has improved. It was a constant struggle to keep my hands and feet warm. The pain in my hands is mostly gone. The all-over joint pain is gone. The fatigue and malaise are gone. I feel good. I feel happy.As she has regained her back strength and dexterity she is now able to enjoy the routine of normal days, like rising from a chair without pain, sleeping and eating well and even doing simple tasks such as opening a jar, which was difficult after her diagnosis.Everyday tasks were difficult, said Julie. Deodorant, flossing, brushing teeth or hair, dressing. All of the daily activities have gotten easier everyday. The pain is mostly gone.My body feels healthy.

Julie has gained much more than flexibility and relief from constant pain during her long medical challenge, and she emphasizes, I learned to not sweat the small stuff. I learned to live every day. I learned to love every day.

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IN-DEPTH: Fighting for your life – Leavenworth Times

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