New Breath 4 Steph

ph: Stephanie or Brian at (207) 793-2357 or Andrea at (207) 357-5606

Facts about CF, Lung transplant and Organ Donation

Facts About CF:
CYSTIC FIBROSIS
Pronunciation: 'sistik fI'browsis


  • One of the most common genetic diseases, especially in Caucasian populations, affects about 30,000 people in the United States. An individual must inherit two defective genes (one from each parent) to have CF. The defective genes cause the body to produce abnormally thick and sticky mucus that clogs the lungs, causes difficulty breathing from mucus accumulation in airways. It can be detected by faulty digestion and a deficiency of pancreatic enzymes, which keep the pancreas from breaking down and absorbing foods.
  • Without treatment, CF results in death for 95% of affected children before age 5.
  • The median age for people with CF is 35.1 years
  • About 1,000 new cases of CF are diagnosed each year.
  • More than 95% of men with CF are sterile.
  • CF occurs in approximately one of every 3,500 live births.
  • One in 400 white couples is at risk for having children with CF.
  • Each time two carriers conceive, there is a 25 percent chance that their child will have CF; a 50 percent chance that the child will be a carrier of the CF gene; and a 25 percent chance that the child will be a non-carrier.
  • More than 10 million Americans are unknowing, symptomless carriers of the defective CF gene.
  • The mucus build up can block the bile duct in the liver, eventually causing permanent liver damage in approximately six percent of people with CF.
  • CF appears usually in early childhood where diagnosis is most important.
  • There are more than 1,000 different mutations of the CF gene.
  • A sweat chloride test is the standard diagnostic test for CF. A high amount of salt found in the sweat indicates CF.
  • To help with digestion, many CF patients take enzymes with their meals to help the pancreas break down the food.
  • Adults with CF may also be at risk of having CF-related diabetes and osteoporosis(1)

Myths and Facts about Organ Donation:

Unsure about donating organs for transplant? Don't let rumors stand in your way of saving lives.

Enough people to populate a small city — nearly 100,000 — are on the U.S. organ transplant waiting list, waiting for an organ donation. On an average day, about 77 people receive organ transplants. But thousands more never get that call from their transplant center saying a suitable donor organ — and a second chance at life — has been found.

It can be hard to think about what's going to happen to your body after you die, let alone donating your organs and tissue. But being an organ donor is a generous and worthwhile decision that can be a lifesaver. Understanding organ donation can make you feel better about your choice. If you've delayed your decision to be a donor because of possibly inaccurate information, here are answers to some common organ donation myths and concerns.

Myth: If I agree to donate my organs, my doctor or the emergency room staff won't work as hard to save my life. They'll remove my organs as soon as possible to save somebody else.

Reality: When you go to the hospital for treatment, doctors             focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care has nothing to do with transplantation.

 

Myth: Maybe I won't really be dead when they sign my death certificate. It'll be too late for me if they've taken my organs for transplantation. I might have otherwise recovered.

Reality: Although it's a popular topic in the tabloids, in reality, people don't start to wiggle a toe after they're declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

 

Myth: Organ donation is against my religion.

Reality: Organ donation is consistent with the beliefs of most religions. This includes Catholicism, Protestantism, Islam and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a member of your clergy. Another option is to check the federal Web site OrganDonor.gov, which provides religious views on organ donation and transplantation by denomination.

 

Myth: I'm under age 18. I'm too young to make this decision.

Reality: That's true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it's what you wanted. Children, too, are in need of organ transplants, and they usually need organs smaller than those an adult can provide.

 

Myth: I want my loved one to have an open-casket funeral. That can't happen if his or her organs or tissues have been donated.

Reality: Organ and tissue donation doesn't interfere with having an open-casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation. For eye donation, an artificial eye is inserted, the lids are closed, and no one can tell any difference. For bone donation, a rod is inserted where bone is removed. With skin donation, a very thin layer of skin similar to a sunburn peel is taken from the donor's back. Because the donor is clothed and lying on his or her back in the casket, no one can see any difference.

 

Myth: I'm too old to donate. Nobody would want my organs.

Reality. There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.

 

Myth:  I'm not in the greatest health, and my eyesight is poor. Nobody would want my organs or tissues.

Reality: Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.

 

Myth:  I would like to donate one of my kidneys now, rather than wait until my death. But I hear you can't do that unless you're a close family member of someone in need.

Reality: While that used to be the case, it isn't any longer. Whether it's a distant family member, friend or complete stranger you want to help, you can donate a kidney through certain transplant centers.

If you decide to become a living donor, you will undergo extensive questioning to ensure that you are aware of the risks and make sure you're giving away your kidney out of pure goodwill and not in return for financial gain. You will also undergo testing to determine that your kidneys are in good shape and that you can live a healthy life with just one kidney.

You can also donate blood or bone marrow during your lifetime. Contact your local chapter of the American Red Cross for details on where you can donate or sign up.

 

Myth: Rich, famous and powerful people always seem to move to the front of the line when they need a donor organ. There's no way to ensure that my organs will go to those who've waited the longest or are the neediest.

Reality: The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently from anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all celebrity transplants to an internal audit to make sure the organ allocation was appropriate.

 

Myth: My family will be charged if I donate my organs.

Reality: The organ donor's family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal go to the transplant recipient.(2)

Facts about Lung Transplants:

Lung transplants are given to people as a last resort treatment for irreversible lung failure. Lung failure happens when the lungs are damaged and unable to transfer oxygen and carbon dioxide to and away from cells. Some diseases that cause the lungs to fail and are treated with transplants are emphysema, including the form caused by the alpha-1-antitrypsin-deficiency, pulmonary fibrosis, cystic fibrosis,  and pulmonary hyperstension. Lung transplantation is not recommended as a treatment for lung cancer.

  • In 2005, approximately 3,500 people in the U.S. were waiting for a lung transplant, yet only 1,000 of them (25 percent) received a transplant. Unfortunately with the improvement of surgical techniques and the expansion of reasons for transplants, the number of needed lung transplants has not kept pace with the number of available donors. To learn more about becoming an organ donor, visit www.organdonor.gov.
  • Making the decision about whether to get a lung transplant when it involves life and death may seem easy, but getting the transplant has risks like any other major operation. There may be surgical complications such as major bleeding, pneumonia and pulmonary edema and possibly painful recovery. In addition, patients may have the burden of taking medication that lower their immune system response and expose them to serious side effects, including cancer.
  • Transplant recipients also have a high risk of rejection and infection.  Since the transplanted lungs are considered foreign to the body, there is a risk that the body's immune system will attack and reject the new transplant. Doctors prescribe immunosuppressive (anti-rejection) medication, which lowers immunity to prevent rejection, but also increases the risk of infection and other diseases. Rejection most often occurs the first three months after transplantation, but medication may need to be taken indefinitely.
  • A team of specially trained staff (pulmonologists, surgeons, immunologists social workers, nurses and technicians) evaluates patients to establish whether he or she would be a good candidate for a lung transplant.  The person's physical and psychological health and suitability for major surgery are taken into account.
  • When a patient is considered to be a good candidate, their name is put on a national waiting list for an organ transplant. Waiting time may extend several years.  Unfortunately, the majority of qualified candidates will not live longer than 1 or 2 years without a transplant.In 2004, close to 533 people waiting for a lung transplant died. 
  • Once there is a deceased lung donor, a ranked list of people is computer-generated. The transplant recipient is chosen based on certain requirements, including immune markers that match the donor, lung size, length of time on the waiting list and proximity to the donor. Each transplant center may have additional criteria also. Once a candidate is chosen, time is critical.  The lung must be transplanted into the patient receiving the organ with 4 to 6 hours.
  • Depending on the chosen recipients' need, a single or double lung transplant may be performed. Double lung transplants involve an incision below the breasts and take about 6-12 hours of surgery. For single lung transplants, the incision is made on the side of the body where the lung is to be replaced; the operation takes about 4-8 hours. Once the lungs are replaced, the blood vessels and airway are attached.
  • In some cases where the heart has been weakened, both the heart and lungs will be replaced. Until 1989, combined heart-lung transplants were the most common form of lung transplantation.  Since then, single lung transplants has become the most common form.
  • After surgery the patient will make frequent trips to the medical center and have a prescribed home based rehabilitation program including physical activity, breathing exercises, nutrition and taking medications especially immunosuppressive drugs. Walking is recommended to restore strength and prevent lung complications.  More strenuous activity can resume when one is comfortable.
  • Current survival rates are as high as 80 percent at 1 year following transplantation and 60 percent at 4 years.
  • Lungs can also be transplanted from living donors, adding to the supply of available organs. A living lung donor can be anyone who matches the recipient, related or not. At least two other people have to donate lobes to form an entire lung for one recipient; lobes of the lung are donated depending on which sections of the lungs need to be replaced. Living lung transplants are advantageous because recipients do not have to wait on a list and the transplant can be scheduled at a time convenient for both parties. In addition, the recipient can begin to take immunosuppressive medication earlier, which decreases the chances of rejection. Living lung transplants tend to be more successful also because there is a closer match between the donor and recipient. Unfortunately, as of now, the living donor program for lungs is in its infancy, so it will not be available for most people needing a transplant at this time.(3)

How to Become an Organ Donor:

Contrary to popular belief, signing a donor card or your driver's license does not guarantee that your organs will be donated. The best way to ensure that your wishes are carried out is to inform your family of your desire to donate. Doing this in writing ensures that your wishes will be considered. Hospitals seek consent of the next of kin before removing organs. If your family members know you wanted to be a donor, it makes it easier for them to give their consent.

If you have no next of kin or you doubt your family will agree to donate your organs, you can assign durable power of attorney to someone who you know will abide by your wishes. A lawyer can help you prepare this document.

Why you should consider organ donation:

Being an organ donor can make a big difference, and not just to one person. By donating your organs after you die, you can save or improve as many as 50 lives. And many families who have lost a loved one who became an organ donor say that knowing their loved one helped save other lives helps them cope with their loss.

It's especially important to consider becoming an organ donor if you belong to an ethnic minority. Minorities including African-Americans, Asians and Pacific Islanders, Native Americans and Hispanics are more likely than whites to have certain chronic conditions that affect the kidney, heart, lung, pancreas and liver. Certain blood types are more prevalent in ethnic minority populations. Because matching blood type is necessary for transplants, the need for minority donor organs is especially high. (4)

 

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New Breath 4 Steph

ph: Stephanie or Brian at (207) 793-2357 or Andrea at (207) 357-5606