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Lung Transplant

After Lung Transplant

As you recover from surgery, the transplant team will follow you closely. In the first few weeks after transplant, you will be seen frequently in our outpatient clinic. If you live outside the St. Louis area, you can expect to remain in St. Louis for about three months as your physicians adjust your medications and monitor for rejection.  The lung transplant social worker can help you arrange temporary lodging near the hospital for the first three months of observation.

Once you are home, you will be in regular contact with your nurse coordinator. You will return periodically to Barnes-Jewish Hospital for follow-up exams.

Throughout the entire transplant process, the transplant team will continue to communicate with your primary care physician. Over time, routine care will be transitioned to your primary care physician. However, for continuity of care and to ensure the best outcome for you, we will follow you for the life of your transplant, while working closely with your primary care physician.

After transplant, your decisions and dedication to your own self-care will be vital to your health and the success of your transplant. You can help yourself by taking your medications as directed, being aware of side effects or signs of rejection, following a healthy lifestyle with good nutrition and exercise and by seeking support. Our transplant team will be with you every step of the way to answer questions and offer guidance and care.

Medications
Rejection
Support groups
Mentor program
Nutrition and exercise
Insurance
Follow-up care

Medications

As a transplant recipient, medications will become a significant part of your life. Our transplant team will help you manage and understand your medications. We also will advise you about taking any over-the-counter medications.

You will require anti-rejection medications to suppress your immune system so your body doesn't reject the transplanted lung. Because your immune system is suppressed, you will be more prone to infection, especially during the first three to six months after transplant.

While you're taking medications you need to carefully monitor and report any unusual side effects to your nurse coordinator. Side effects vary by dosage and type of medication. Ask your nurse coordinator or doctor any questions you have about your particular medication.

With the changes to prescription drug coverage through Medicare Part D (effective Jan. 1, 2006), more people than ever are eligible for drug coverage. Find out if the immunosuppressive drugs needed after transplant are covered.

Rejection

Rejection is the body's immune response to a transplanted organ. To protect the transplanted lung, you will take medication to suppress your immune system to try and minimize the likelihood of rejection.

Many patients experience an episode of rejection in the first few months. The risk of rejection usually decreases over time, but can occur at any time. It's important to follow all medication regimens and physician orders to prevent rejection, and to recognize the early signs of rejection.

Early symptoms of rejection include:

  • Flu-like symptoms
  • Fatigue
  • Shortness of breath
  • Cough
  • Chest pain
  • Fever

If you experience any of these signs of rejection, call your transplant nurse coordinator immediately. Rejection must be treated as soon as possible to avoid complications. It is usually treated by temporarily increasing the dose of your anti-rejection medication or by administration of additional medications.

Support group

The Lung Transplant Support Group is designed to offer support and education to Barnes-Jewish Hospital lung transplant recipients, candidates and their families. By providing a forum for sharing information and experiences, the support group helps patients and those close to them better understand and cope with the issues and concerns associated with lung transplant.

The group is a mix of people in various stages of the transplant process so members learn firsthand about what to expect during the transplant experience. Group leaders, members and guest speakers explore the physical and emotional concerns that accompany lung transplant. Some common topics discussed at the monthly meetings include:

  • Lifestyle changes caused by transplant
  • Financial concerns associated with transplant
  • Transplant surgery
  • Side effects of medications
  • Fear of organ rejection

Mentor program

The Mentor Program at Barnes-Jewish Hospital is a valuable and unique program designed to provide information, guidance and emotional support to those involved in the transplant process. The mentors at the foundation of the program are patients who have already successfully gone through transplant. They can provide a great source of encouragement and understanding for new patients.

The confidential Mentor Program offers a social network of peers that helps those experiencing the process in overcoming the sense of being alone, and encourages them to stay active before and after transplant. Mentors can provide firsthand knowledge of the process, plus information about logistical matters such as places to live while in St. Louis for transplant, how to work with the transplant team, and their own experience with certain medications.

Nutrition and exercise

As you recover from transplant surgery, it is normal to feel tired or weak. With regular exercise and good nutrition, you will eventually get back to a more normal, active routine. Most patients are ready to return to work or school within three to six months after transplant.

In the hospital, you will receive physical therapy to help you regain your strength. Once you're out of the hospital, you will be seen in the pulmonary rehabilitation department five days a week. You should avoid strenuous activity and heavy lifting for the first six months after transplant. Activities and sports that pose a high risk of injury should be avoided entirely.

After transplant, your body has increased nutritional needs to allow for healing and to fight infection. You also need to rebuild muscle tissue and restore protein levels. Your transplant team dietitian will develop a diet plan specific to your needs to help in your recovery and keep you healthy after transplant. The dietitian also can help you with any special dietary instructions or diets to manage co-existing medical complications such as diabetes, high blood pressure or high cholesterol.

Insurance

The Barnes-Jewish Hospital Transplant Center accepts most insurance plans. However, insurance companies periodically change their coverage. Please verify your insurance coverage with your provider. For more help with insurance issues, our financial counselors who specialize in transplant coverage will work with you to understand the financial aspects that come along with your transplant.

Follow-up care

We follow you closely for the life of your transplant, which is one important reason why patients in our program have excellent overall success rates. Long-term care is provided by a certified clinical transplant coordinator (CCTC) and a team of transplant pulmonologists who work with your primary care physician.

You will need to remain in the St. Louis area for the first 12 weeks following your transplant procedure. During this time your recovery will be monitored closely. This monitoring includes weekly doctor's visits and pulmonary function tests along with twice-weekly blood tests and chest x-rays. You will also participate in pulmonary rehabilitation five days a week.

One of the ways your transplant team will monitor you for rejection is through the use of fiber optic bronchoscopy. This allows your physician to examine the major air passages of the lungs and take small samples of tissue and fluid, if necessary. The procedure is performed after you are mildly sedated. Your physician will then insert the bronchoscope, which is a small, lighted, flexible tube about the width of a pencil through your mouth and into your windpipe. You can expect to have about five bronchoscopies in the first year following your transplant.

Most patients who don’t experience major complications are ready to leave St. Louis and return home 12 weeks after surgery. Prior to leaving you will undergo a series of tests to check on your heart and lung  function. Your nurse coordinator will meet with you and your support person to discuss the transition back to the care of your local doctor.

Your local doctor will take over primary responsibility for your care, just as they did before your transplant. The transplant team will communicate with them regarding the recommended frequency of testing such as blood work and pulmonary function tests. The transplant team will work with your local physician as needed The transplant team will work with your local physician as needed to address any problems and will continue to monitor and adjust your immunosuppression.

For more information on the lung transplant program at Barnes-Jewish Hospital, call .

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