My boyfriend and I are planning on moving from California to Oregon. He has family there and recieved a very good job offer. I have SSI, MediCal, and GHPP. This covers all my medications, hospitalizations, doctor visits, and anything else I might need. Except for SSI everything else is for California residents only, which means I have to live in the state of CA to recieve my benifits. I have been in California since I was born so I don't know about how things are done in Oregon by way of health coverage. Any information on what programs are available for CFers (healthwise) would be greatly appeciated. My boyfriend and I want to move as soon as we can, but we don't want to jeoperdize my health in any way. It took a long time for me to get the help I do have now and I don't want to lose it without something to replace it.Thanks for any help you can provide.-Sunnie
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Moving and Need info ASAP
- Thread starter anonymous
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Hi Sunny, I live in Oregon and would love to help in any way I Can. The Oregon CF clinic is at Oregon Health Science University in Portland. The CF social worker is Wendy Palmrose. You can call her at 503-494-8023. The receptionist will transfer you to her voice mail. My daughter,6, gets SSI. Where are you planning on moving to? The CF nurse is Ben McCullar. You can't get anyone nicer. I'm sure he would also help. Michelle
Robbie,Here is a report I just finished for a public speaking event. Hope this helps.Sincerily,Troy father of a beautiful son with CFCystic FibrosisCystic Fibrosis (CF) is a genetic disorder caused by a pair of genes that are not working properly. CF is a life shortening, inherited disorder that affects the way that salt and water move into and out of the cells of the body. The most important effects are in the lungs and the digestive system (especially the pancreas) where thick mucus blocks the small tubes and ducts. Lung problems can lead to progressive blockage, infection, lung damage, and even death if there is too much damage. The pancreatic blockage causes poor digestion and absorption of food, leading to poor growth and malnutrition. The sweat glands are also affected. Patients make a much saltier sweat than normal. Most parts of the body that make mucus are also affected including the reproductive system in both male and females with the disorder. Because CF can affect several organs, several tests can help a doctor diagnose the disease. If pancreatic enzyme levels are reduced, an analysis of the patients stool may reveal decreased or absent levels of digestive enzymes trypsin and chymotrypsin or high levels of fat. If insulin secretion is reduced, blood sugar levels are high. Pulmonary function tests may show that breathing is compromised. Also a chest x-ray may suggest the diagnosis. Cystic Fibrosis is usually diagnosed with a sweat test. This is a painless and quick procedure that can usually yield a definitive answer as to whether or not a person has CF. However; it is not always useful for very young babies who do not yet produce enough sweat. The quantitative pilocarpine iontophoresis sweat test measures the amount of salt in sweat. The drug Pilocarpine is given to stimulate sweating in a small area of skin, and a piece of filter paper is placed against the skin to absorb the sweat. The concentration of salt is then measured. A salt concentration above normal levels confirms the diagnosis in people who have symptoms of CF or who have family members with CF. Although the results of the test are valid anytime after a baby is twenty four hours old, collecting a large enough sweat sample from a baby younger than three or four weeks old may be difficult. He sweat test can confirm the diagnosis in older children and adults.Relatives other than the parents of a child with CF may want to know if they are likely to have children with the disease. Genetic testing can show whether a person carries the common gene changes known to cause CF by analyzing DNA from a small amount of cells or blood. Cells can most easily be obtained from a blood sample or from the inside of the mouth by using a cheek brush collection kit. The DNA from these cells can be isolated and used in the laboratory to test for the presence of the cystic fibrosis gene mutations. Unless both parents have at least one defective gene, their children will not have CF. When both parents carry a defective CF gene, each pregnancy has a twenty five percent chance of producing a child with CF. During pregnancy, an accurate diagnosis in the fetus is usually possible. Meconium Ileus, a form of intestinal obstruction in newborns, occurs in seventeen percent of those with cystic fibrosis. Meconium, the dark green substance that emerges as the newborns first stool, is thick and passes more slowly than normal. If the meconium is too thick, it blocks the intestine. Blockage may lead to perforation of the intestinal wall or a twisted intestine. Meconium may also cause plugs in the large intestine or anus, causing a temporary blockage. Babies who have Meconium Ileus almost always develop other symptoms of CF at a later date.The first symptom of CF in an infant who does not have Meconium Ileus is often poor weight gain at four to six weeks of age. Inadequate amounts of the pancreatic secretions essential for proper digestion of fats and proteins lead to poor digestion in eighty five to ninety percent of babies with CF. The baby has frequent, bulky, foul smelling, oily stools and may have a protruding abdomen. Growth is slow despite a normal or large appetite. The baby is thin and has flabby muscles. Inadequate absorption of the fat soluble vitamins – A, D, E, and K – may lead to night blindness, rickets, anemia and other bleeding disorders. In twenty percent of untreated infants and toddlers, the lining of the large intestine protrudes through the anus, a condition called rectal prolapse. Babies who have been fed soy protein formula or breast milk may develop anemia and swelling because they are not absorbing enough protein.Cystic Fibrosis affects both the lungs and the sinuses. About half of the children with CF are first taken to the doctor because they keep coughing, wheezing, and having respiratory tract infections. Coughing, the most noticeable symptom is often accompanied by gagging, vomiting, and disturbed sleep. As the disease progresses, the chest becomes barrel-shaped, and insufficient oxygen may make the fingers clubbed and the skin bluish. Polyps may form in the nose. The sinuses may fill with thick secretions.A person with CF produces thick, sticky mucous that gives bacteria a friendly place to grow. Also, CF patients are susceptible to more strains of bacteria than other people and have a hard time fighting these infections. There are some theories as to why this is so, but they are tentative and very controversial. The lungs of a person with CF can become infected with various strains of Pseudomonas, Aspergillus, Staphylococcus Aureus, and Burkholderia Cepacia.- Pseudomonas is a bacterium found throughout the environment. Several strains can grow in the CF lung. Symptoms include an increased cough, green mucous, and a drop in lung function as measured by a pulmonary function test. Pseudomonas is treated with oral antibiotics, intravenous antibiotics such as Ceftazidine and Tobramyacin, and sometimes an inhaled form of Tobramyacin.- Aspergillus is a fungus that can grow in the cavity of the lung that has been damaged previously by an infection. Often the affected person does not exhibit symptoms for a long period of time. When symptoms do appear, they usually include coughing, feeling exhausted, and weight loss. There is also the possibility of coughing blood. It is usually treated with large doses of anti-fungal drugs such as Amphotericin B or Intraconazole.- Burkholderia Cepacia is a bacterium that exists throughout the environment. Most people are immune to it, but those with CF can develop a lung infection from it and it is resistant to all known antibiotics. Some people who become infected with Burkholderia ---Cepacia do not show any adverse effects, while others show a marked decline in health or die from it.Infection with one of these strains is called Methicillin Resistant Staphylococcus Aureus (MRSA). Once a person with CF develops MRSA, they are discouraged from coming into contact with other CF patients to prevent cross infection. Many conferences, camps, and other social events for people with CF prohibit those with MRSA from attending. Equally stringent rules apply to those who are infected with Burkholderia Cepacia. Most Cystic Fibrosis patients are treated with inhalable aerosol solutions. People with CF inhale medications daily to open airways in the lungs, to thin the abnormally thick mucous, and to fight the bacteria that cause their reoccurring lung infections. However, although treating these problems makes the patient live a longer and more comfortable life, none of this control the inflammation that occurs in the lungs, which is what ultimately causes respiratory failure. Inflammation occurs in the airways as the body tries to battle the infections. It is caused by a number of factors in the body, but one of the most powerful is Interleukin-8, (IL-8), which is very hard to control medically. The good news is that there is a new inhalation aerosol in the pre-clinical stages of research that has been shown to reduce the levels of IL-8 produced by the lungs, which will hopefully control the dangerous levels of inflammation common for those with CF.Unless people with CF that have pancreatic enzyme insufficiency take pancreatic enzymes routinely with each meal, they can develop symptoms of starvation despite a healthy appetite and an adequate diet. Physicians have long prescribed pancreatic enzymes for people suffering from pancreatic enzyme insufficiency. Cystic Fibrosis affects the digestion and absorption of nutrients because abnormal mucus blocks the ducts of the pancreas causing maldigestion and malabsorption. This can cause problems including malnutrition, poor growth, loss of fat in stool (Steatorrhea), and loss of protein in stool (Azotorrhea). Malabsorption can lead to poor growth, and even malnutrition. The primary therapeutic goals have been to increase fat absorption, preventing malabsorption, and to decrease Steatorrhea and its pain and bloating. To prevent malabsorption a CF person typically needs to dramatically increase calorie intake, protein intake, fat intake, salt intake, and vitamin and mineral intake. Increased intake of calories is very important for a person with CF. There is a higher energy requirement because of food maldigestion (when food is eaten and not digested) and food malabsorption (when food is not efficiently absorbed).Cystic Fibrosis is a fatal lung disease caused by an altered gene, but how the gene affects cells is not completely understood. Now, researchers have new evidence suggesting the gene can change the internal chemistry of some lung cells, making them more susceptible to certain bacteria that cause sickness and ultimately death. The investigators also used a simple process to correct those changes in the test tube. The study appears in the Proceedings of the National Academy of Sciences online early edition. “This research proposes a novel explanation for why lung infections are so persistent in Cystic Fibrosis,” says Christopher Taylor, Sc.D, an expert on bacterial respiratory diseases with the National Institute of Allergy and Infectious Diseases, which funded the study. “If additional studies support the findings presented here, we will have a better understanding of the disease and perhaps new ways to treat it.” Although the CF gene has been known since 1989, exactly how it is linked to increased susceptibility to Pseudomonas Aeruginosa and other bacteria is unknown. The gene encodes a protein called CFTR, which regulates the flow of charged atoms, or ions, into and out of cells. Maintaining a proper ion balance is critical for cells to function properly, but researchers have not known how an imbalance makes the lung cells a more attractive site for bacteria to grow. To solve that riddle, Jens Poschet, Ph.D, and Vojo Deretic, Ph.D, began to study a link between CFTR and bacterial infections while both researchers were at the University of Michigan; they are now both at the University of New Mexico. Because bacteria must adhere to proteins on the cell surface before they can invade, the researchers wondered if a malfunctioning CFTR could lead to changes in those surface proteins. If so, perhaps the cell surface would become more amenable to invading bacteria. NIAID is a component of the National Institutes of Health. NIAID supports basic and applied research to prevent, diagnose, and treat infectious and immune-mediated illnesses.Like any chronic lifelong disease, CF carries with it certain psychological and social problems that every person with CF must confront at various stages of life. Fear, anger, worry, depression, resentment, and other negative emotions can adversely affect people with CF as they attempt to deal with their symptoms and the day-to-day challenges of living. People with CF can best meet these challenges by realizing that they are not alone; there are thirty thousand other Americans who are suffering from CF. There are also hundreds of physicians, medical technologists, pharmaceutical companies, private organizations, and government agencies working together to solve the problems related to CF. Family and friends offer another invaluable support network. People living with CF need only to seek out these vital connections to strengthen themselves physically, emotionally, and integrating CF into daily routines. CF people can look forward to leading active and productive lives, graduating from high school, college, pursuing careers, cultivating relationships, getting married, and raising families. Ultimately, the best defense against the psychological challenges connected with the disease is to promote a willing individual, responsible for personal health, to honestly deal with the realities of CF, and to foster a positive attitude toward life. ReferencesCysticfibrosis.comExcerpt taken from Ortho-McNeilMerckmanual.comExcerpts from cff.orgExcerpts taken from Michigan State University, DNA Diagnostic LaboratoryJF Poschet, et al. Molecular basis for defective glycosylation and Pseudomonas pathogenesis in cystic fibrosis lung
I have a couple of questions. How do other CF families afford all the expense that goes with a child with CF? My son is 14 yrs old and has CF. We have medical ins. on him, but the ins. is so high and with the copays and deductibles and copays for ALL his Rx. Im just wondering is there help out there. Also, when we go for our Dr. visits in the past they have always filed our visit as an office visit and we only had to pay our copays, which was a big help. The last time we went they asked for our copay like they always do, I month later I go a bill saying i owed almost the whole charges for the visit!!! I called and they explained they no longer file the visits as an office visit, BUT since the CF clinic is in the hospital, they now file our visits as outpatient, THEREFORE, we have to meet our large deductible and pay 20% afterthat. Does any one else have this problem! Thank you!
I would get in touch with your cf clinic's social worker. There are different programs they will know about. Does your son get SSI. If not, that might be worth checking into. Also, tell the doctors, sometimes they can adjust the way they code the bills. I would also call my insurance co. and talk with them about it. Never just take the bill without checking everything out, fight for them to pay it.
California, New York, and New Jersey are the only three states with a program like (as strong as) GHPP. Most states offer ZERO support. New Mexico offers some.
Arizona, Illinois, Florida, Tennessee, Kansas, Texas, and Missouri have no programs at all. I am not sure about Washington, or Colorado, or the other states. For most states you have to be dirt poor to receive any aid. CA, NY, NJ, an NM, you don't have to be poor or an illegal alien to receive free financial aid.
Arizona, Illinois, Florida, Tennessee, Kansas, Texas, and Missouri have no programs at all. I am not sure about Washington, or Colorado, or the other states. For most states you have to be dirt poor to receive any aid. CA, NY, NJ, an NM, you don't have to be poor or an illegal alien to receive free financial aid.
Wow, I didn't think this thread would come up again. So I will give a quick update (I started it back in 2003). Since Oregon does not have a plan like GHPP and my lung function is at 40% my boyfriend and I decided that I would remain in California. He works out of state and comes home once a week. Since I am still attending college, I use vacation time to visit him. We are looking into getting a place for me to stay on the coast since it is so much easier to breathe there.
It's just sad that I am limited on how far I can go because of medical coverage.
It's just sad that I am limited on how far I can go because of medical coverage.