Lung Transplant Info For PPH Patients


What is Lung Transplantation? (For more Info See Lung Transplant Basics)

Lung transplantation is the surgical replacement of either one (single) or two (double) badly diseased lungs with healthy lungs from a human organ donor. The decision to perform lung transplantation is made when the doctors feel that there is no other treatment that can help your lung disease. The transplant doctors will determine whether you need a single or double lung transplant based on your particular lung disease, medical condition and history. In most cases involving PPH the patient is experiencing severe pulmonary arterial pressure and a double transplant is needed.

What is the success rate of lung transplants?

According to the United Network for Organ Sharing (UNOS) the patient survival rates for all patients that had a lung transplant are 85% at one month, 69% at one year, and 51% at three years for patients transplanted.

How long do I wait on a Transplant Listing?

The wait for suitable donor organs to become available may be a year or longer. The average waiting time on the list is 18 months.

After a patient has been accepted as a suitable candidate for lung transplantation, they will typically be contacted by a transplant coordinator. The patients name will be placed on local and national waiting lists for donor organs. In most states, the list is maintained by an Organ Procurement Agency. The national list is maintained through the United Network of Organ Sharing (UNOS). These organizations maintain a computer listing of all patients waiting for donor organs - heart, lung, kidney, liver, or pancreas.

When donor lungs become available, a computer search is done to determine who would be the best match. Several factors are taken into consideration to make a match: including an individual's blood type, body weight, chest size and length of time on the list. Tissue typing is done retrospectively.

The first factor to be considered when deciding who will receive the organs is blood type. Only the major blood group (O, A, B, AB) is considered not the Rh factor (positive or negative). Next, the size of the donor is matched with the size of the recipient. The donor lungs can not be too large or too small to fit in the chest cavity of the recipient. Length of time on the list and severity of illness are other factors that are also considered.These factors combined with different populations, make it difficult tell you what your "position" is on the list. Many factors are taken into consideration when determining who receives the organs.

It will help to understand what these factors are and what to expect when you receive "the call". Unfortunately, not everyone waiting for donor organs will receive them. The list of people waiting for organs continues to grow on a daily basis and there are not enough donor organs to meet these needs. Those of us involved in transplantation take very seriously the need to increase donor awareness by educating the public.

Who is a Lung Transplant Donor?

Donors are people who have suffered some sort of accident and all efforts to save their lives have failed. They have been determined to be brain dead and are maintained on life support to control breathing and other body functions. Donors are carefully tested to rule out any infections that could potentially spread to the person who receives organs from them. The organs are also carefully screened to assure they function perfectly and are free from injury. Many people who are waiting for a heart-lung transplantation have mixed feelings related to the fact that someone must die in order for them to benefit from there organs. These feelings are common. It helps to remember that many donor families achieve a measure of peace and satisfaction knowing that some good has come from their misfortune.

How will I Be Notified?

Donor organs become available any time of day, any day of the week - usually when you least expect it.
When a donor organ becomes available for you, you will be notified by a donor transplant coordinator. This person will attempt to reach you first at your home number. If there is no answer, they will try the other phone numbers that you have provided. You will be instructed at that time where you will need to go once you arrive at the Hospital. Do not eat or drink anything after you have received this call. Many people keep a small bag packed with a few essential items such as toothbrush, shaving supplies etc. in preparation for "the call". It will be necessary for you to come directly to the hospital. You will not have time to do those chores that you put off for the last minute. Leave those chores for family to take care of while you are recovering. Once you have reached the hospital, you will be taken to a room to be prepared for surgery. You will be given a physical exam, have bloodwork drawn and you will be asked to sign the consent forms. You may also be given the first immunosupressive medication. Your family may stay with you until you are taken to surgery. They will then wait in the surgical family waiting room until the operation is complete.

What should I do to Prepare before surgery?

While you are waiting for transplantation, it is very important that you maintain good communication with the transplant nurse coordinators. You will need to provide us with a list of phone numbers so when organs become available, we will be able to get contact you. Think about who would most likely be able to reach you if you are not at home. When attempts are made to contact you when donor organs become available, the person trying to reach you will not leave a message on an answering machine. It is important that they speak directly with someone. If you leave instructions on the answering machine on how to contact you, those instructions will be followed.

Many people ask about the use of pagers or beepers while they are waiting for transplant.

It will also be important for you to let the transplant coordinators know how you are doing while you are waiting. Specifically, you will need to notify the transplant coordinators if you are placed on any antibiotics, if your steroid dose changes or if you are hospitalized.

While you are waiting for transplantation, you will see one of the transplant pulmonologists every four to six months. Also, one of the transplant coordinators will contact you by phone periodically. This will allow the team to monitor your condition.

It will be important for you to remain as healthy as possible while you are waiting for organs to become available. Maintaining a healthy diet and adequate weight will help to insure this. You should to participate in regular exercise while you are waiting for donor organs. This can be accomplished through a rehab program close to your home. Exercise and an adequate diet help to keep you from losing muscle tone and will make recovery from the surgery much easier.

What are the risks of Rejection and Infection?

Often the body rejects the new lungs, seeing the transplanted lungs as being foreign to the body and responds by attempting to fight and destroy it. Your immune system is responsible for this reaction which may be very potent. When a major organ such as the lung is implanted, the body will recognizes this as foreign and will attack using its immune response the new lung.

In order to prevent rejection, the patient will be treated with immunosuppressants, medications that interfere with the body's normal immune response. Taking these drugs will require a lifelong commitment after implantation.

Most patients will have episodes of rejection in the first several months after transplant. The treatment requires patients come into the hospital for a few days and receive doses of the anti-rejection medications intravenously. Determining the proper levels of immunosuppressant medication is a matter of frequent adjustments, as each individual is unique and requires and individualized approach. To assist in this adjustment process and to catch any episodes of rejection or infection early, when they are easier to treat, patients may be asked to monitor your lung function at home and to report any significant changes.

The goal is to find the lowest dose that will prevent rejection and therefore minimize the risk of infection and side effects from the medications.

Because the immune system is suppressed to prevent the patient from rejecting your new lung, the patient are more susceptible to infection. The patients temperature and white blood cell count is mointered closely after the procedure. Infections are generally treated with antibiotics, sometimes only for one to two weeks, but possibly longer. The patient will also be asked to take certain immunosuppressants regularly to prevent further infection.

After lung transplantation the patient will need to take the anti-rejection medications as prescribed by the team every day sometimes twice a day, for the rest of their life. Without these drug the body will reject the new lungs. Rejection of the lung can result in death and is a serious risk.

More Detailed Information about Post-Transplant Care >>

Support Groups:

The wait for suitable donor organs to become available may be a year or longer. Many people experience a wide range of feelings during this time. While this is normal, you do not need to feel alone. It sometimes helps to discuss these feelings with others. We encourage you to participate in one of the support groups that are available for transplant patients. These groups consist of people who are waiting for transplantation as well as people who have had transplantation.

Contact Us

Lung Transplant Basics | PPH Drug Treatments | Financial & Legal Help

Pre and Post-Transplant Care | Frequently Asked Questions