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Patient and Caregivers

Health Issues - below are some of the most common health issues. Please feel free to read the information we have collected. Some of this information includes risks, tips, explanations, and prevention tips for patients and caregivers.
Alzheimers Diabetes Osteoporosis
Asthma Epilepsy/Seizures Parkinson's Disease
Breast Cancer Hepatitis C Sleep Apnea
CHF Multiple Sclerosis Urinary Incontinence
COPD Muscular Dystrophy Wound Care
Cystic Fibrosis Obesity  

Help for Patients and Caregivers : Cystic Fibrosis

What is Cystic Fibrosis?
Common Symptoms
What Causes Cystic Fibrosis?
Surgical Treatments
Caregiver Information
Additional Information

What is Cystic Fibrosis?
Cystic fibrosis (CF) — a life-threatening disorder that causes severe lung damage and nutritional deficiencies. CF is an inherited (genetic) condition affecting the cells that produce mucus, sweat, saliva and digestive juices. Normally, these secretions are thin and slippery, but in CF, a defective gene causes the secretions to become thick and sticky. Instead of acting as a lubricant, the secretions plug up tubes, ducts and passageways, especially in the pancreas and lungs. Respiratory failure is the most dangerous consequence of CF. Each year approximately 3,200 white babies are born in the United States with CF. The disease is much less common among black and Asian-American children. Most babies born with CF are diagnosed by age 3, although mild forms of the disease may not be detected until the third, fourth or fifth decade of life. In all, about 30,000 American adults and children are living with the disorder. Although there's still no cure, the emerging field of gene therapy may someday help correct lung problems in people with CF.

Lung Cells - Normal vs. Cystic Fibrosis

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Common Symptoms?
The symptoms of cystic fibrosis usually appear within the first year of life, but may not appear until late childhood or adolescence. The specific signs and symptoms of CF can vary, depending on the severity of the disease and with age. For example, one child with CF may have respiratory problems but not digestive problems, while another child may have both.

In some newborns the first sign may be a blockage of the intestines (meconium ileus). This occurs when meconium — tarry, greenish-black stools normally passed by an infant in the first day or two after birth — becomes so thick it can't move through the intestines. Other signs in newborns may include a failure to grow, bulky and greasy stools (steatorrhea), and frequent respiratory infections.

The signs and symptoms of CF in children and young adults may include:

  • Salty taste to the skin. People with CF tend to have two to five times the normal amount of salt (sodium chloride) in their sweat. This may be one of the first signs parents notice because they taste the salt when they kiss their child.
  • Blockage in the bowel.
  • Foul-smelling, greasy stools.
  • Delayed growth.
  • Thick sputum. It's easy for parents to overlook this symptom because infants and young children tend to swallow their sputum rather than cough it up.
  • Coughing or wheezing.
  • Frequent chest and sinus infections with recurring pneumonia or bronchitis.
  • Growths (polyps) in the nasal passages.
  • Cirrhosis of the liver due to inflammation or obstruction of the bile ducts.
  • Displacement of one part of the intestine into another part of the intestine (intussusception) in children older than age 4.
  • Protrusion of part of the rectum through the anus (rectal prolapse). This is often caused by stools that are difficult to pass or by frequent coughing.
  • Enlargement or rounding (clubbing) of the fingertips and toes. Although clubbing eventually occurs in most people with CF, it also occurs in some people born with heart disease and other types of lung problems.
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What Causes Cystic Fibrosis?
It is most common in Caucasian-American children, occurring in about one in every 2,000 births. It is less common among African-American children, (about one in 17,000 births), and even more rare among Asian Americans (one in 100,000 births).

The mode of inheritance is autosomal, which means that it does not involve the x or y chromosomes, which determine sex. It is also recessive, which means that the disease is inherited from both parents. About five percent of Caucasian Americans (one in 28) are believed to carry the gene. Carriers do not have symptoms of the disease, and often do not even realize that they are one of more than 10 million people who carry cystic fibrosis. The number of cystic fibrosis carriers is likely to increase in the future.

This chart can help you determine the genetic probability of having a child with cystic fibrosis

Chance of Unaffected Child
Chance of Child Carrier
Chance of Child with CF
Unaffected + Carrier
No Chance
Two Carriers
Unaffected + CF Patient
No Chance
No Chance
Carrier + CF Patient
No Chance


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Medications for Cystic Fibrosis
Many treatments exist for the symptoms and complications of CF. The main goal is to prevent infections, reduce the amount and thickness of secretions in the lungs, improve airflow, and maintain adequate calories and nutrition.To accomplish these objectives, treatments for CF may include:

  • Antibiotics. Newer antibiotics may more effectively fight the bacteria that cause lung infections in people with CF. Among these are aerosolized antibiotics that send medication directly into airways. One of the major drawbacks of long-term use of antibiotics is the development of bacteria that are resistant to drug therapy.
  • Mucus-thinning drugs. When your white blood cells attack bacteria in your airways, DNA in the cells is released, making the mucus in your airways even thicker. The aerosolized drug dornase alfa (Pulmozyme) is an enzyme that fragments DNA, making mucus thinner and easier to cough up. Side effects of Pulmozyme may include airway irritation and sore throat.
  • Bronchodilators. Use of medications such as albuterol (Proventil, Ventolin) may help keep open the bronchial tubes by clearing thick secretions.
  • Bronchial airway drainage. People with CF need a way to physically remove thick mucus from their lungs. This is often done by manually clapping on the front and back of the chest — a procedure that's best performed with the person's head over the edge of the bed so that gravity helps clear the secretions. In some cases an electric chest clapper, known as a mechanical percussor, is used. An inflatable vest that vibrates at high frequency can also help people with CF cough up secretions. Both adults and children with CF need to have bronchial airway drainage at least twice a day for 20 to 30 minutes. Older children and adults can learn to do this themselves, especially if they use mechanical aids such as vests and percussors. Young children need the aid of parents, grandparents or older siblings.
  • Exercise. Children with CF should be active. They can swim, ride bikes, run, play sports and games. Most children with CF can do any exercise they want.
    Exercise can:
    - Loosen mucus in the lungs so it can be coughed up easier;
    - Cause coughing, which helps clear the lungs;
    - Strengthen breathing muscles and the heart.
  • Oral enzymes and better nutrition. CF can cause you to become malnourished because the pancreatic enzymes needed for digestion don't reach your small intestine, preventing food from being absorbed. As a result, you may need many more calories than you otherwise would. Supplemental high-calorie nutrition, special vitamins and enteric-coated oral pancreatic enzymes can help you maintain or even gain weight.
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Surgical Treatments

Lung transplantation. Your doctor may suggest lung transplantation if you have severe breathing problems, life-threatening pulmonary complications or increasing resistance to antibiotics used to treat lung infections. Whether you're a good candidate for the procedure depends on a number of factors, including your overall health, certain lifestyle factors and the availability of donor organs. Because both lungs are affected by CF, both need to replaced. If your chest isn't large enough to hold two adult donor lungs, your surgeon is likely to use two lower lobes contributed by two living donors. However it's performed, lung transplantation is a major operation and may lead to serious complications, especially post-surgical infections. The five-year survival rate has increased in the last 10 years, however.

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CF Caregiver Well-Being

If you have a child with CF, one of the best things you can do is to learn as much as possible about the disease. Diet, medication and early recognition of infection are important.Also important is performing daily chest percussion to drain mucus from your child's lungs. Your doctor or respiratory therapist can show you the best way to perform this lifesaving procedure. In addition, the following steps can help aid your child's health:

  • Keep your child's immunizations up-to-date. This includes your child's pneumococcal and influenza vaccines. CF doesn't affect the immune system, but children with CF are more likely to develop complications when they become sick.
  • Encourage your child to lead as normal and active a life as possible. Exercise is extremely important for people of all ages who have CF. Regular exercise helps loosen mucus in your airways and strengthens your heart and lungs. And for many people with CF, participating in sports can improve confidence and self-esteem.
  • Make sure your child eats a healthy diet. Be sure to discuss your child's dietary needs with your doctor or a nutritionist.
    Use nutrition supplements. Provide the fat-soluble vitamin supplements and pancreatic enzymes your child needs to stay as healthy as possible.
  • Emphasize liquids. Encourage your child to drink plenty of liquids to help loosen the mucus. This is especially important in the summer when children are active and tend to lose a lot of fluids.
  • Eliminate smoke. Don't smoke in your home or car, and don't allow other people to smoke around your child. Secondhand smoke is harmful for everyone, but especially for people with CF.
  • Encourage hand washing. Teach everyone in your family to wash their hands thoroughly before eating, after using the bathroom, when coming home from work or school, and after being around a person who is sick. Hand washing is the best way to protect against infection.
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Additional Information

To stay healthy, those with cystic fibrosis need regular visits and examinations at a Cystic Fibrosis Foundation-accredited care center. These centers provide specialized care for those with cystic fibrosis. Usually patients are seen every six to eight weeks by the specialized cystic fibrosis team. This team consists of a doctor, nurse, respiratory therapist, dietitian, physical therapist, social worker and in some cases a psychologist. Knowing the change or increase in symptoms is helpful. It is important for patients with cystic fibrosis to exercise, eat healthy high calorie diets, and take their medications and treatments as directed even though the treatments take up a great deal of time.

National Heart, Lung and Blood Institute (NHLBI)
6701 Rockledge Dr.
P.O. Box 30105
Bethesda, MD 20824-0105
Phone: (301) 592-8573
Cystic Fibrosis Foundation
6931 Arlington Rd.
Bethesda, MD 20814
Phone: (301) 951-4422
Toll-Free: (800) 344-4823
Fax: (301) 951-6378


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  • 10 Tips for Family Caregivers
  • Questions to Ask Your Healthcare Provider
  • How to Communicate with an Insurance Provider
  • Find a Doctor
  • Information on Seating & Mobility
  • Tips for Family Caregivers from Doctors
  • Care Management Techniques You Can Use
  • Compare Home Health Agencies in Your Area
  • Keep loved ones connected & updated!
  • Additional Resources


10 Tips for Family Caregivers.
1. Caregiving is a job and respite is your earned right. Reward yourself with respite breaks often.
2. Watch out for signs of depression, and don't delay in getting professional help when you need it.
3. When people offer to help, accept the offer and suggest specific things that they can do.
4. Educate yourself about your loved one's condition and how to communicate effectively with doctors.
5. There's a difference between caring and doing. Be open to technologies and ideas that promote your loved one's independence.
6.Trust your instincts. Most of the time they'll lead you in the right direction.
7. Caregivers often do a lot of lifting, pushing, and pulling. Be good to your back.
8. Grieve for your losses, and then allow yourself to dream new dreams.
9. Seek support from other caregivers. There is great strength in knowing you are not alone.
10. Stand up for your rights as a caregiver and a citizen.
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Tips for Family Caregivers from Doctors

  • Write questions down so you won’t forget them
  • Be clear about what you want to say to the doctor. Try not to ramble.
  • If you have lots of things to talk about, make a consultation appointment, so the doctor can allow enough time to meet with you in an unhurried way.
  • Educate yourself about your loved one’s disease or disability. With all the information on the Internet it is easier than ever before.
  • Learn the routine at your doctor’s office and/or the hospital so you can make the system work for you, not against you.
  • Recognize that not all questions have answers—especially those beginning with “why.”
  • Separate your anger and sense of impotence about not being able to help your loved one as much as you would like from your feeling about the doctor. Remember, you are both on the same side.
  • Appreciate what the doctor is doing to help and say thank you from time to time.
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Care Management Techniques You Can Use
Did you ever wish you could just pick up the phone and call someone who would take stock of your situation, help you access the right services, counsel you and your family to help resolve some of your differences, then monitor your progress with an eye toward channeling your energy and abilities as effectively as possible? If your answer is "yes," you're not alone. Having the help of a care coordinator (often called a care manager) could make all of our lives easier and less lonesome, and help us be more capable family caregivers. While most of us may not have access to a care coordinator, we can all learn how to think and act like one, thereby reaping numerous benefits for our loved ones and ourselves.

What Is Care Coordination?
Although every case is different, the care coordination approach usually involves:

  • Gathering information from healthcare providers;
  • An assessment of your care recipient and the home environment;
  • Research into available public and/or private services and resources to meet your loved one’s needs; and
  • Ongoing communication between all parties to keep information up-to-date and services appropriate and effective.

Unfortunately, an assessment of your abilities and needs is not necessarily a standard part of the process, but it should be. A complete view of the situation cannot be gained without one. An objective analysis of your health, emotional state, other commitments, etc., are key elements in determining how much you can and cannot do yourself, and what type of outside support is needed to ensure your loved one's health and safety.

Become Your Own Care Coordinator
By learning and applying at least some of the care coordination techniques and ideas that follow, you'll be in a much better position to develop an organized course of action that will, hopefully, make you feel more confident and in control - a goal well worth working toward.

Educate yourself on the nature of the disease or disability with which you're dealing. Reliable information is available from the health agency that deals with your loved one's condition and the National Institutes of Health. When using the Internet, stick with well-known medical sites. Understanding what is happening to your care recipient will provide you with the core knowledge you need to go forward. It will also make you a better advocate when talking with healthcare professionals.

Write down your observations of the present situation including:
  • Your loved one’s ability to function independently, both physically and mentally.
  • The availability of family and/or friends to form a support network to share the care.
  • The physical environment: Is it accessible or can it be adapted at reasonable cost?
  • Your other responsibilities — at work, at home, and in the community.
  • Your own health and physical abilities.
  • Your financial resources, available insurance, and existence of healthcare or end-of-life documents.

This assessment will help you come to a realistic view of the situation. It will let you know the questions to which you need answers. It can be a handy baseline for charting your caregiving journey and reminding you just how much you've learned along the way.

Hold a family conference. At least everyone in the immediate family should be told what's going on. A meeting can set the stage for divvying up responsibilities so that there are fewer misunderstandings down the road when lots of help may be needed. A member of the clergy, a professional care coordinator, or even a trusted friend can serve as an impartial moderator. A family meeting is a good way to let everyone know they can play a role, even if they are a thousand miles away. It can help you, the primary family caregiver, from bearing the brunt of all the work all of the time.

Keep good records of emergency numbers, doctors, daily medications, special diets, back-up people, and other pertinent information relating to your loved one's care. Update as necessary. This record will be invaluable if something happens to you, or if you need to make a trip to the ER. If you can maintain a computer-based record, that will make updating all that much easier and it might even allow you to provide the medical team with direct access to the information.

Join a support group, or find another caregiver with whom to converse. In addition to emotional support, you'll likely pick up practical tips as well. Professionals network with each other all the time to get emotional support and find answers to problems or situations they face. Why shouldn't family caregivers?

Start advance planning for difficult decisions that may lie ahead. It's never too early to discuss wills, advance directives, and powers of attorney, but there comes a time when it is too late. It is also vital that you and your loved one think through what to do if you should be incapacitated, or, worse, die first. It can happen.

Develop a care team to help out during emergencies, or over time if your situation is very difficult. In an ideal world there will be lots of people who want to help. More likely you'll be able to find one or two people to call on in an emergency or to help with small chores. The critical thing is to be willing to tell others what you need and to accept their help.

Establish a family regimen. When things are difficult to begin with, keeping a straightforward daily routine can be a stabilizer, especially for people who find change upsetting and confusing.

Approach some of your hardest caregiving duties like a professional. It's extraordinarily difficult to separate your family role from your caregiving role, to lock your emotions up in a box while you focus on practical chores and decisions. But it is not impossible to gain some distance some of the time. It requires an almost single-minded approach to getting the job at hand done as efficiently and effectively as possible. It takes practice, but is definitely worth the effort.

©National Family Caregivers Association | | Phone: 800/896-3650

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Seating & Mobility - As a caregiver, you need to be very understanding to the individual's needs. This is a very hard time as they are being told they need to start living their life in a different manor than they had done so previously. It will be most beneficial to educate them, either with a professional, or through a support group. By becoming involved in different activities with others in the same condition, the individual will be able to make the transition much easier. As far as the actual device, you will want to make sure that the individual is fully capable of performing all the operations of the mobility device and can do so in a comfortable manner. Areas to pay close attention to include an adjustable backrest, a suspension system, a fore-and-aft track adjustment, an up-and-down seat adjustment, an armrest and/or footrest, and lumbar region support.

How do you care for your mobility device?

The most important areas that you need to pay attention to are referred to as the 3 B’s…Bad batteries, bent wheel rims and failed bearings. If you notice something that doesn’t seem right, but it isn’t all too annoying, you should still get it looked at right away. This could prevent a more severe accident from happening. So as the saying goes “it’s better to be safe than sorry”.

When a wheelchair is purchased, you will want to make sure that all the correct adjustments and modifications are made. This needs to be done by a professional and should take up to a couple of hours if done correctly. As long as the proper measures are taken initially, the work of maintaining the device will be substantially easier.
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Additional Resources

It's always wise to find out what your county and state have to offer in the way of services, even if you think you won't qualify for them. Check the blue pages of your phone book for the numbers, or go on line. Counties and states all have web sites. Type the name of your state or county and state into any major search engine i.e. Iowa, or Montgomery County, PA. Navigate from there to locate the Department of Health and Human Services and the specific office most relevant to your needs, such as office on disabilities, elder affairs, or maternal and child health.

Other good sources of information include your local hospital or clinic (social work department), area adult day centers, social service and faith-based agencies, and/or the local chapter of the health agency that focuses on your loved one's condition. It is by no means certain that any of these will offer caregiver support services, but they are good places to check, and they are good sources for information about services to directly support your loved one.

National Family Caregivers Association
10400 Connecticut Avenue, Suite 500
Kensington, MD 20895
Web site:

The National Family Caregivers Association (NFCA) is a grassroots organization created to educate, support, empower, and advocate for the millions of Americans who care for chronically ill, aged, or disabled loved ones. NFCA is the only constituency organization that reaches across the boundaries of different diagnoses, different relationships, and different life stages to address the common needs and concerns of all family caregivers. NFCA serves as a public voice for family caregivers to the press, to Congress and the general public. NFCA offers publications, information, referral services, caregiver support, and advocacy.

Caregiver-Specific Web Sites
There are a variety of Web sites that offer information and support for family caregivers, in addition to those from specific organizations.

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