Navigating a Lung Transplant

Navigating a Lung Transplant
Lymphangioleiomyomatosis (LAM) is a progressive lung disease. Over time, your lungs may become increasingly impaired, meaning they will be unable to keep the flow of oxygen (inhale) and carbon monoxide (exhale) moving at the rate that your body needs in order to function efficiently. This is why patients with advanced LAM have such a difficult time getting around without feeling out of breath and fatigued.

Although the disease develops differently in each patient, some women have aggressive, fast-growing disease, while others remain stable for years. Some eventually need oxygen therapy. In time, even the extra oxygen may not improve your condition and you may need to consider a lung transplant.

What is a lung transplant?
A lung transplant, also called lung transplantation, is surgery to replace one or both of the diseased lungs with healthy lungs from a human donor. This is usually considered the last resort for irreversible lung failure.

There are strict guidelines to determine which patients are eligible for transplantation. A national waiting list run by the United Network for Organ Sharing (UNOS) matches donors to potential recipients based on shared blood type, lung size, the severity of the patient's disease and likelihood that a new lung will improve the patient's survival.

Weighing the benefits and risks of lung transplantation
Deciding whether to have a lung transplant is a big decision. It is important to educate yourself about the risks and benefits of this life-changing and potentially life-saving procedure. While lung transplantation won't treat the underlying causes of LAM, it holds the promise of giving you more years of life and improving your quality of life.

Lung transplantation has the same risks as any other major operation. These may include major bleeding, pneumonia, fluid in the lungs and painful recovery. In addition, transplant patients may reject the new lung and be vulnerable to infection. Other potential problems include blood clots, side effects to medications and an increased risk of certain cancers.

Rejection
Your body's immune system will identify the new lung as a foreign invader and, as a result, try to fight it - just as it would attack the flu or other viruses. To "turn off" this response, patients are given immunosuppressive, or anti-rejection, medications. Rejection of the donated organ is most likely to occur within the first three months. Symptoms of lung rejection may include:

Fever
Chills
Flu-like aches
Shortness of breath

Infections
Patients taking immunosuppressive medications following transplantation are less able to fight off infections and viruses. Because the body's natural ability to fight off infections is reduced, it is critical to report any signs of infection to your treating physician right away.

Regular follow-up visits, breathe tests, X-rays and other tests are needed to keep an eye on how the body is responding to and healing from the transplant.

Questions to Ask Your Health Care Provider

When should I consider lung transplantation?
What tests are used to determine whether I am eligible for a lung transplant?
What transplant center/surgeon would you recommend?
What surgical and recovery costs are covered by insurance?
How long does recovery take?
Are there resources you can recommend for me and my family?

Resources
Lung transplantation is covered in the LAM Patient Handbook and the Transplant Handbook. If you are being evaluated for transplant, or if you simply have questions and would like to receive these publications, please contact Patient Services Office.

Additionally, "The Lung Transplantation Handbook: A Guide for Patients," written by LAM patient Karen Couture, reveals the inside story of lung transplantation. A double-lung recipient, Couture introduces LAM patients to the complex process of getting on the transplant waiting list and how the list works; preparing for surgery and the surgery itself; financing the operation and the long recovery afterward; and the complications of rejection, infections and the medications. Scattered throughout the book are short, inspirational stories and quotes from patients who have undergone lung transplantation. The book can be ordered by going to http://www.trafford.com/ and entering the book title in the search bar, or by calling 888-232-4444.

Helpful Web Sites

United Network for Organ Sharing (UNOS)

700 North 4th Street

Richmond, VA 23219

(888) 894-6361

http://www.unos.org/

Second Wind Lung Transplant Patients Association

(888) 855-9463

http://www.2ndwind.org/

American Lung Association

61 Broadway, 6th Floor

New York, NY 10006