Welcome to our fight against SCLERODERMA! I was diagnosed with Scleroderma (Diffuse Systemic Sclerosis) on March 22, 2012 Systemic Sclerosis is defined as a chronic connective tissue disease that causes the skin and tissues of the body to harden and get swollen. It can cause damage to the lungs, heart, kidneys, digestive tract, muscles and joints. Before this diagnosis, my symptoms have been constant coughing for 4 years and Raynauds. Raynauds Phenomenon is a condition that when exposed to cold temperatures, the fingers and toes result in discoloration. When I first started coughing, I was pregnant with my daughter in 2007, so they really couldn’t do anything in fear of any procedure possibly hurting the baby. After my daughter was born, my primary care physician first thought I only had asthma. Then, I started seeing an Allergist as well, but my coughing never stopped. I had a bad December last year and then a bad January. When February came, it just got worst. Walking for a long time and going up a flight of stairs was quite a challenge. Everything made me cough. I would have coughing episodes anytime from waking up to trying to sleep at night. My chest and back hurt so much from coughing so hard. I’m often very exhausted and lightheaded after each episode. In addition, my legs, hands and face always seem to be swollen. I tried to stay away from salt, but it never just went away. I was also constantly tired and feeling sore all over my body. Finally, my hubby requested a chest x-ray and they saw some abnormalities with my x-ray. At first, they thought I had walking pneumonia, so I went on antibiotics for a while. On my follow up visit, I had another x-ray done and there had been no improvements since the antibiotics, so I was referred to a Pulmonary Specialist. She requested a CT scan of my chest, a blood test and a Pulmonary test. Then, the Pulmonary Specialist referred me to a Rheumatologist who then requested for more blood test looking for specific autoimmune white blood cells. My CT scan showed inflammation and scarring of my lungs. The blood test showed that I have a high number of white blood cells fighting against my own body causing the inflammation. The Pulmonary test showed that I only have 69% lung capacity remaining. I was prescribed to undergo chemotherapy (using CYTOXAN) to aggressively treat my scleroderma. I was scheduled 6 treatments, once a month and the doctor will review my condition my progression. My first chemotherapy was on April 2nd. Everyone told me I might feel some fatigue and nausea. At the same time, I was also told that I may not feel too bad since the first treatment was a smaller dose than normal. Actually, it wasn’t so bad. I had slight nausea and fatigue, but aside from that, I stopped coughing for 2 weeks. It was such a relief that I actually forgot I was sick. All of a sudden, it seemed like the medicine wore off because my symptoms came back after the 2nd week. I was coughing all the time, my back and my chest was hurting. It was very difficult to breathe… again. On May 2nd, I received my 2nd chemotherapy. Considering this was supposed to be a stronger dose, I was actually looking forward to feeling better right after the treatment. Unfortunately, I was only symptom free for about three days and then the coughing started again. I told my doctor and she requested for another chest x-ray. The results showed a progression of my scleroderma. She found more scarring on my lungs. I’m on Prednisone again to help me control my coughing and difficulty of breathing until my Chemo starts working in my body. Today, I had an ECG (Echocardiogram) to check if my heart is doing okay. I have another doctor’s appointment next week and hopefully she can give me a reading to tell me how my test today went. For now, I’m still dealing with coughing and a lot of fatigue, but I’m hopeful. And I’m thankful for my amazing family and friends who love and support us.
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Kristine Cruz Munda