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22 months ago, Gina began to constantly be treated for bronchitis. She would go to her primary care doctor, receive a steroid shot, and an antibiotic shot. Then she was prescribed steroids and antibiotics. She would get better but about 2-3 weeks later she would be sick again. She went in to see her primary care doctor because she was very ill. Her chest X-ray revealed that she had double pneumonia. She was hospitalized and that’s when everything took a turn for the worst. She was not responding to the iv antibiotics. Her white blood cell count was over 300,000. So the pulmonologist ordered a mri of her lungs. They informed Gina, and her husband, Stephen, that she had ground glass opacities in both lungs. The pulmonologist informed them that she needed a bronchoscopy. This is a procedure where they go in and do a biopsy of the lungs. It came back that Gina had "Interstitial Lung Disease." They pulmonologist put her on 40mg of steroids a day. The doctor did not inform them of the terrible side effects that this would cause. Gina was in and out of the hospital 4 times with pneumonia. Due to missing so much work she was laid off from her job.
Interstitial lung disease (ILD) is an umbrella term for a large group of disorders that cause scarring (fibrosis) of the lungs. The scarring causes stiffness in the lungs which makes it difficult to breathe. Some example of ILDs include: Idiopathic Pulmonary Fibrosis. Hypersensitivity Pneumonitis. The only way to determine the type of lung disease you have is by a lung biopsy or lung resection. Gina and her husband repeatedly requested that they perform a biopsy so that they would know the exact disease she had.
The pulmonologist she was seeing refused to perform the biopsy. They decided to get a 2nd opinion with a critical care pulmonologist. Gina’s 1st appointment with the new pulmonologist was in January. He immediately took her off of the steroids. Unfortunately there was severe damage because she had been on steroids for over 14 months. In February she was hospitalized again with double pneumonia and it was a rare antibiotic resistant infection. She spent over 2 weeks in the hospital.
In March she began throwing up blood. She was hospitalized and had 3 bleeding ulcers due to the steroids. She had to have 2 procedures where the Gastroenterologist had to cauterize her stomach to stop the bleeding. Once she was stable her critical care pulmonologist referred her to a Cardiothoracic Surgeon.
July 23rd Gina had a lung resection where they removed a section of her right lung and also a biopsy. Finally they were going to have a diagnosis. This would allow the doctors to treat Gina’s condition. The treatment Gina needs for her lung disease is Immunosuppressive Medications. These drugs are similar to chemotherapy. Unfortunately due to Gina’s current health conditions they have to postpone her treatment which means her lungs will continue to deteriorate.
Approximately 4 days after surgery Gina passed out for an unknown length of time. She was rushed to the hospital and was diagnosed with rhabdomyolysis and she was in kidney failure.
Rhabdomyolysis is a rare condition with only 26,000 cases reported every year. Your body releases a damaging protein into the bloodstream called myoglobin. The normal amount of myoglobin in your body ranges from 28-150. Gina’s myoglobin was over 80,000. The kidneys cannot process such high amounts so they begin to fail. Gina was hospitalized and had several different problems going on. She lost all feeling in her right foot. In her left leg she lost all feeling from mid calf all the way to her foot as well. She was also unable to move her left foot. Then her legs began to swell. Her left leg from the knee down was larger than her thigh.
The doctors did an mri from her waist down. That’s when they discovered approximately 30 cyst. They were in her abdomen, pelvic region, hips, both thighs and all the way down to her ankles. The doctors were perplexed and they immediately did a biopsy. Gina has one cyst in her left hip that is 9cm around and 12mm thick. They also performed a needle biopsy on this cyst.
Gina was discharged while they waited for the biopsy results. She went to a skilled nursing facility for 1 week. It takes 4 weeks to get the results. She was admitted again because her legs began swelling. This is when all 6 doctors were completely puzzled. All of her blood work came back normal yet her body and the mris showed a completely different results. They had done an mri approximately 30 days ago. When the did the mri again there was more bad news. Gina now has Osteonecrosis of the hip. This is a painful condition that occurs when the blood supply to the Femoral head stops. The bone then dies. The number one cause of this condition is steroids. The only way to correct this is hip replacement surgery. 30 days ago her hips did not show this condition. Now both of sides are dead. The orthopedic surgeon who specializes in hip replacement came in and spoke with Gina. He explained the condition. however he informed her until they can get a diagnosis on the disease that is affecting her entire body that he could not perform the surgery. Unfortunately because the blood flow has stopped on both femurs, her bones in the hip area will continue to die.
The lead doctor on her case told her he honestly did not know what she had and all of the doctors felt the same way. They had never seen anything like this. They decided to do another biopsy on her left hip. The orthopedic surgeon took biopsies from 3 different muscles. When he came out to talk with Stephen he was at a loss for words. He said her muscles were “soupie” and that he had never seen anything like this. The biopsy will take 4 weeks to come back. The final decision from all of the doctors is to send Gina to Baylor University Medical Center in Dallas.
Gina will have to go alone because Stephen can not afford to miss work nor can they afford the plane tickets. The financial burden is overwhelming. They have sold personal belongings, tried to cut out any unnecessary expenses and they still can’t make ends meet.
Gina is on 17 different medications. At this point she only gets what she absolutely needs. She doesn’t go to all of her doctors appointments nor does she go to physical therapy 3xs a week because they can’t afford it.
Gina’s medical bills are over $250,000 at this point. This is before she goes to Baylor.
Depending on how much it will cost to fly to Baylor and how much her health insurance will cover Gina may have to postpone going.
Interstitial lung disease (ILD) is an umbrella term for a large group of disorders that cause scarring (fibrosis) of the lungs. The scarring causes stiffness in the lungs which makes it difficult to breathe. Some example of ILDs include: Idiopathic Pulmonary Fibrosis. Hypersensitivity Pneumonitis. The only way to determine the type of lung disease you have is by a lung biopsy or lung resection. Gina and her husband repeatedly requested that they perform a biopsy so that they would know the exact disease she had.
The pulmonologist she was seeing refused to perform the biopsy. They decided to get a 2nd opinion with a critical care pulmonologist. Gina’s 1st appointment with the new pulmonologist was in January. He immediately took her off of the steroids. Unfortunately there was severe damage because she had been on steroids for over 14 months. In February she was hospitalized again with double pneumonia and it was a rare antibiotic resistant infection. She spent over 2 weeks in the hospital.
In March she began throwing up blood. She was hospitalized and had 3 bleeding ulcers due to the steroids. She had to have 2 procedures where the Gastroenterologist had to cauterize her stomach to stop the bleeding. Once she was stable her critical care pulmonologist referred her to a Cardiothoracic Surgeon.
July 23rd Gina had a lung resection where they removed a section of her right lung and also a biopsy. Finally they were going to have a diagnosis. This would allow the doctors to treat Gina’s condition. The treatment Gina needs for her lung disease is Immunosuppressive Medications. These drugs are similar to chemotherapy. Unfortunately due to Gina’s current health conditions they have to postpone her treatment which means her lungs will continue to deteriorate.
Approximately 4 days after surgery Gina passed out for an unknown length of time. She was rushed to the hospital and was diagnosed with rhabdomyolysis and she was in kidney failure.
Rhabdomyolysis is a rare condition with only 26,000 cases reported every year. Your body releases a damaging protein into the bloodstream called myoglobin. The normal amount of myoglobin in your body ranges from 28-150. Gina’s myoglobin was over 80,000. The kidneys cannot process such high amounts so they begin to fail. Gina was hospitalized and had several different problems going on. She lost all feeling in her right foot. In her left leg she lost all feeling from mid calf all the way to her foot as well. She was also unable to move her left foot. Then her legs began to swell. Her left leg from the knee down was larger than her thigh.
The doctors did an mri from her waist down. That’s when they discovered approximately 30 cyst. They were in her abdomen, pelvic region, hips, both thighs and all the way down to her ankles. The doctors were perplexed and they immediately did a biopsy. Gina has one cyst in her left hip that is 9cm around and 12mm thick. They also performed a needle biopsy on this cyst.
Gina was discharged while they waited for the biopsy results. She went to a skilled nursing facility for 1 week. It takes 4 weeks to get the results. She was admitted again because her legs began swelling. This is when all 6 doctors were completely puzzled. All of her blood work came back normal yet her body and the mris showed a completely different results. They had done an mri approximately 30 days ago. When the did the mri again there was more bad news. Gina now has Osteonecrosis of the hip. This is a painful condition that occurs when the blood supply to the Femoral head stops. The bone then dies. The number one cause of this condition is steroids. The only way to correct this is hip replacement surgery. 30 days ago her hips did not show this condition. Now both of sides are dead. The orthopedic surgeon who specializes in hip replacement came in and spoke with Gina. He explained the condition. however he informed her until they can get a diagnosis on the disease that is affecting her entire body that he could not perform the surgery. Unfortunately because the blood flow has stopped on both femurs, her bones in the hip area will continue to die.
The lead doctor on her case told her he honestly did not know what she had and all of the doctors felt the same way. They had never seen anything like this. They decided to do another biopsy on her left hip. The orthopedic surgeon took biopsies from 3 different muscles. When he came out to talk with Stephen he was at a loss for words. He said her muscles were “soupie” and that he had never seen anything like this. The biopsy will take 4 weeks to come back. The final decision from all of the doctors is to send Gina to Baylor University Medical Center in Dallas.
Gina will have to go alone because Stephen can not afford to miss work nor can they afford the plane tickets. The financial burden is overwhelming. They have sold personal belongings, tried to cut out any unnecessary expenses and they still can’t make ends meet.
Gina is on 17 different medications. At this point she only gets what she absolutely needs. She doesn’t go to all of her doctors appointments nor does she go to physical therapy 3xs a week because they can’t afford it.
Gina’s medical bills are over $250,000 at this point. This is before she goes to Baylor.
Depending on how much it will cost to fly to Baylor and how much her health insurance will cover Gina may have to postpone going.
Organizer
Randy Johnson
Organizer
Baton Rouge, LA