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Sofia is the wife of Frank Torres, an active NYC Detective assigned to the 66 Pct Detective Squad. The Torres family has encountered catastrophic medical bills and is in need of assistance. Any help is greatly appreciated. This is Sofia's story:
My name is Sofia Torres. I have been diagnosed with a fatal form of a disease called Systemic Scleroderma. Some of you may not know what this disease is or know that there is no cure for it. I had read about it when I went to nursing school back in the1990’s. I didn’t pay too much attention to it because it was considered rare and there was not much information about it. Today, I am discovering that it isn’t as rare as I thought. Systemic scleroderma is an autoimmune disorder that affects the skin and internal organs. It is not contagious or considered a cancer. There are an estimated 300,000 people in the United States who have scleroderma. About one-third of those people have the systemic form of the disease. The word "scleroderma" means hard skin in Greek. It causes a buildup of scar tissue (fibrosis) in the skin and other organs due to the excess production of collagen. Normally, collagen strengthens and supports connective tissues throughout the body but in my case it is causing me to become stiff and my organs to not work the way they are supposed to. Since the symptoms of scleroderma are similar to those of other autoimmune diseases, it is difficult to diagnosis as I learned.
I did not realize that my symptoms started back in October of 2010. I was sitting on my couch and went to stand up, felt my hip pop out of its socket. I collapsed to the floor not realizing my lower back had rotated and could not get up because the nerve pain was horrific. I never thought that this would be the beginning of my long, painful journey living with this debilitating disease. It took almost a year to figure out that I had avascular necrosis of both my femur heads. Several X-rays and CAT Scans only showed I had bad arthritis of both hips and a torn labrum of my left hip. No explanation as to how this could happen to a healthy, active young woman. I was in severe pain daily and my doctors couldn’t tell me why. They thought it was all in my head or that I just wanted to get pain pills. I knew I was not crazy nor an addict and continued my search for answers. Finally, we were recommended to our orthopedic surgeon after being hospitalized four times for severe hip pain and inability to walk. He discovered that I had no circulation to my hips and gave me hope that I will be fine and pain free by having total hip replacements. So, of course I said ok. Anything to take the pain away and I can resume my life. In January 2012 I had my left hip replaced and in February of 2012 I had the right hip surgery. It was extremely painful but I was confident this was going to pass.
Not long after my hip surgery, I started feeling fatigued, lightheaded and short of breath. As a critical care nurse I knew something was wrong with my heart. My cardiologist ran extensive tests of my heart. An echocardiogram showed a prolapsed leaky mitral valve but not severe enough for surgery or to indicate my worsening symptoms. In September of 2012 I had emergency open heart surgery because I was passing out and could not speak without gasping for air. During the surgery they discovered my mitral valve had torn and I was in heart failure. The surgeon was able to save my valve by placing an annoplasty ring to support it. It was a difficult recovery, During the three days in the Cardiac Intensive Care Unit, my lungs collapsed that required 4 chest tubes. I was intubated and on life support because I was too unstable after the surgery. Aside from my small set back after the surgery, my cardiac surgeon thought the surgery was a success and I should be back on my feet in no time, but he was wrong.
Two weeks later, I started feeling the same as I felt before the heart surgery and was getting worse as the time went on. My Cardiac and Pulmonary doctors were puzzled. Coupled with several hospitalizations and medical care expense totaling over a million dollars, they had no concrete answers for me. To top it off, I developed Hepatitis C from the multiple blood transfusions during my heart surgery. I didn't get treated for my Hepatitis C at that time because the treatment would cause more harm than good. Therefore, my Gastroenterologist and I decided to wait for a better option to cure me since I was not showing any signs of sclerosis.
As the time passed, the shortness of breath, chest and joint pain worsened. Additional tests showed I had degenerative spinal disease, several herniated disc in my back, bursitis on both knees and my left lung kept collapsing. Still, no one provided me with a cause of all my ailments. I couldn’t even walk without collapsing because I could not breathe. I thought, I’m going to die. With much insistence on my part for different cardiac testing they discovered I had pulmonary hypertension. By now, my pulmonary hypertension was severe and I needed to take two medications that can help manage it. It was a battle to get my pulmonary hypertension drugs approved by the insurance (three months) due to the cost of these medications ($12,000 per month for just two drugs) and I had to wait another three months for the drugs to take effect prolonging my despair.
In April 2013 I was finally tested for scleroderma during one of my hospitalizations by a Rheumatologist who was curious about my case. The test came back positive with 10x the abnormal results. I was thrilled and devastated at the same time receiving the diagnosis. As a nurse, I began to research as much as I could about the disease because I was in denial that there could be no cure with all the technology and medical advancement in today’s society. In essences, I discovered that my disease was going to get worse and more expensive. I started thinking about my family and the burden I would place on them. My independence was slowly being stripped away from me. How are we…I going to manage? I couldn’t work any more because I was bed ridden most days due to my generalized weakness and pain. Not to mention, I lived in constant fear of passing out and dying alone not from my disease but from injury. So many emotions flowed through me and I was angry because this disease had irrevocably changed my life but at the same time humbled me that I have been able to find the strength to overcome whatever obstacles lay ahead.
Today, my scleroderma has affected several of my internal organs, muscles, joints and my appearance since I’ve been diagnosed. I have difficulty swallowing and digesting foods. As well as severe nausea, colic and intestinal spasms causing me to lose weight. I pass out and collapse frequently. My heart is failing due to congestive heart failure and pulmonary hypertension. I need supplemental oxygen to walk with assistance. Using my motorized chair gives me some independence and freedom from some of my symptoms but I’m limited to use the chair only when my husband is off. Since he is the only one that can lift the 250 pound chair out of my car because we cannot afford a customized van. At night I use a bipap machine and eight pillows to help me sleep more comfortably due to my severe obstructive sleep apnea. I recently got over from a pericardial effusion because scleroderma is unpredictable. It can attack any part of my body without warning. It is very scary. I also don’t tolerate changes in weather well and get pneumonia frequently. I’m on high dose steroids and oral chemotherapy to help me suppress my inflammation and hopefully slows down the progression of my disease. I pretty much keep my self isolated because a common cold can hospitalize or kill me. Everyday simple tasks and personal basic needs have become difficult due to the I constant non-relenting pain and fatigue.
Currently, we are trying to get my hep C medication grant approved from the manufacturer since my husband’s prescription plan excludes specialty medications. It cost $33,000 for 12 weeks of treatment but have been unsuccessful. My disease is not curable so most treatments are considered experimental like my IV chemotherapy. I need two doses (costs $10,000 per dose) to give me a 50/50 chance to help reduce some of the inflammation that is damaging my organs and to suppress some of my symptoms but the insurance company will not cover it. My friends, family and I are praying for a miracle as I continue to fight this debilitating disease. We are reaching out for help because we just can’t do it alone anymore.
My name is Sofia Torres. I have been diagnosed with a fatal form of a disease called Systemic Scleroderma. Some of you may not know what this disease is or know that there is no cure for it. I had read about it when I went to nursing school back in the1990’s. I didn’t pay too much attention to it because it was considered rare and there was not much information about it. Today, I am discovering that it isn’t as rare as I thought. Systemic scleroderma is an autoimmune disorder that affects the skin and internal organs. It is not contagious or considered a cancer. There are an estimated 300,000 people in the United States who have scleroderma. About one-third of those people have the systemic form of the disease. The word "scleroderma" means hard skin in Greek. It causes a buildup of scar tissue (fibrosis) in the skin and other organs due to the excess production of collagen. Normally, collagen strengthens and supports connective tissues throughout the body but in my case it is causing me to become stiff and my organs to not work the way they are supposed to. Since the symptoms of scleroderma are similar to those of other autoimmune diseases, it is difficult to diagnosis as I learned.
I did not realize that my symptoms started back in October of 2010. I was sitting on my couch and went to stand up, felt my hip pop out of its socket. I collapsed to the floor not realizing my lower back had rotated and could not get up because the nerve pain was horrific. I never thought that this would be the beginning of my long, painful journey living with this debilitating disease. It took almost a year to figure out that I had avascular necrosis of both my femur heads. Several X-rays and CAT Scans only showed I had bad arthritis of both hips and a torn labrum of my left hip. No explanation as to how this could happen to a healthy, active young woman. I was in severe pain daily and my doctors couldn’t tell me why. They thought it was all in my head or that I just wanted to get pain pills. I knew I was not crazy nor an addict and continued my search for answers. Finally, we were recommended to our orthopedic surgeon after being hospitalized four times for severe hip pain and inability to walk. He discovered that I had no circulation to my hips and gave me hope that I will be fine and pain free by having total hip replacements. So, of course I said ok. Anything to take the pain away and I can resume my life. In January 2012 I had my left hip replaced and in February of 2012 I had the right hip surgery. It was extremely painful but I was confident this was going to pass.
Not long after my hip surgery, I started feeling fatigued, lightheaded and short of breath. As a critical care nurse I knew something was wrong with my heart. My cardiologist ran extensive tests of my heart. An echocardiogram showed a prolapsed leaky mitral valve but not severe enough for surgery or to indicate my worsening symptoms. In September of 2012 I had emergency open heart surgery because I was passing out and could not speak without gasping for air. During the surgery they discovered my mitral valve had torn and I was in heart failure. The surgeon was able to save my valve by placing an annoplasty ring to support it. It was a difficult recovery, During the three days in the Cardiac Intensive Care Unit, my lungs collapsed that required 4 chest tubes. I was intubated and on life support because I was too unstable after the surgery. Aside from my small set back after the surgery, my cardiac surgeon thought the surgery was a success and I should be back on my feet in no time, but he was wrong.
Two weeks later, I started feeling the same as I felt before the heart surgery and was getting worse as the time went on. My Cardiac and Pulmonary doctors were puzzled. Coupled with several hospitalizations and medical care expense totaling over a million dollars, they had no concrete answers for me. To top it off, I developed Hepatitis C from the multiple blood transfusions during my heart surgery. I didn't get treated for my Hepatitis C at that time because the treatment would cause more harm than good. Therefore, my Gastroenterologist and I decided to wait for a better option to cure me since I was not showing any signs of sclerosis.
As the time passed, the shortness of breath, chest and joint pain worsened. Additional tests showed I had degenerative spinal disease, several herniated disc in my back, bursitis on both knees and my left lung kept collapsing. Still, no one provided me with a cause of all my ailments. I couldn’t even walk without collapsing because I could not breathe. I thought, I’m going to die. With much insistence on my part for different cardiac testing they discovered I had pulmonary hypertension. By now, my pulmonary hypertension was severe and I needed to take two medications that can help manage it. It was a battle to get my pulmonary hypertension drugs approved by the insurance (three months) due to the cost of these medications ($12,000 per month for just two drugs) and I had to wait another three months for the drugs to take effect prolonging my despair.
In April 2013 I was finally tested for scleroderma during one of my hospitalizations by a Rheumatologist who was curious about my case. The test came back positive with 10x the abnormal results. I was thrilled and devastated at the same time receiving the diagnosis. As a nurse, I began to research as much as I could about the disease because I was in denial that there could be no cure with all the technology and medical advancement in today’s society. In essences, I discovered that my disease was going to get worse and more expensive. I started thinking about my family and the burden I would place on them. My independence was slowly being stripped away from me. How are we…I going to manage? I couldn’t work any more because I was bed ridden most days due to my generalized weakness and pain. Not to mention, I lived in constant fear of passing out and dying alone not from my disease but from injury. So many emotions flowed through me and I was angry because this disease had irrevocably changed my life but at the same time humbled me that I have been able to find the strength to overcome whatever obstacles lay ahead.
Today, my scleroderma has affected several of my internal organs, muscles, joints and my appearance since I’ve been diagnosed. I have difficulty swallowing and digesting foods. As well as severe nausea, colic and intestinal spasms causing me to lose weight. I pass out and collapse frequently. My heart is failing due to congestive heart failure and pulmonary hypertension. I need supplemental oxygen to walk with assistance. Using my motorized chair gives me some independence and freedom from some of my symptoms but I’m limited to use the chair only when my husband is off. Since he is the only one that can lift the 250 pound chair out of my car because we cannot afford a customized van. At night I use a bipap machine and eight pillows to help me sleep more comfortably due to my severe obstructive sleep apnea. I recently got over from a pericardial effusion because scleroderma is unpredictable. It can attack any part of my body without warning. It is very scary. I also don’t tolerate changes in weather well and get pneumonia frequently. I’m on high dose steroids and oral chemotherapy to help me suppress my inflammation and hopefully slows down the progression of my disease. I pretty much keep my self isolated because a common cold can hospitalize or kill me. Everyday simple tasks and personal basic needs have become difficult due to the I constant non-relenting pain and fatigue.
Currently, we are trying to get my hep C medication grant approved from the manufacturer since my husband’s prescription plan excludes specialty medications. It cost $33,000 for 12 weeks of treatment but have been unsuccessful. My disease is not curable so most treatments are considered experimental like my IV chemotherapy. I need two doses (costs $10,000 per dose) to give me a 50/50 chance to help reduce some of the inflammation that is damaging my organs and to suppress some of my symptoms but the insurance company will not cover it. My friends, family and I are praying for a miracle as I continue to fight this debilitating disease. We are reaching out for help because we just can’t do it alone anymore.
Organizer and beneficiary
Sofia Torres
Beneficiary