University Transplant Center
A University Health System & UT Health Science Center Partnership | San Antonio, Texas
 E-mail  | Print  | 

Transplant Journey

Facing a life threatening illness can cause a range of emotions, including fear, anxiety, depression, anger, denial and helplessness. Often, patients have battled lung disease for many months, perhaps years. A referral for transplant means your life is about to change – the transplant journey will continue for the rest of your life.

You are not alone in this journey – your support system of family and friends will be there for you, along with your doctor and the Transplant Team at University Transplant Center. You are the patient, and you are the key decision maker on this journey, and you need all the information you can get.

This overview covers the principal stages in the transplant journey. For more detailed information, consult our patient guide. We have also included a brief list of online resources. As you travel along the transplant journey, you will find a community of people with experience and knowledge to share. Make use of these resources, and sustain your commitment to a healthy life.

Lung Transplant Journey

Step 1: Evaluation
Step 2: Waiting
Step 3: The Call
Step 4: Surgery
Step 5: Life After Transplant


When you are referred for a transplant by your Pulmonologist or personal physician, you will be seen in University Transplant Center’s Transplant Clinic by a Transplant Pulmonologist and Transplant Nurse Coordinator. Your medical records and radiology films will be reviewed. We will also ask you to do a 6 minute walk test during this visit. The physician will then visit with you to discuss your medical history and do a physical examination. If the physician determines you are a candidate to start the transplant testing, the Transplant Nurse Coordinator will schedule the tests which will begin within about two weeks from the first visit.

Medical tests may include:

  • heart catheterization
  • electrocardiogram and echocardiogram
  • ventilation-perfusion lung scan
  • pulmonary function
  • chest x-ray
  • chest CT scan
  • 6-minute walk test and SNIFF diaphragm function
  • lab tests
  • bone density
  • gastrointestinal consult
  • gastric emptying study
  • 24 hour pH and manometry
  • mammogram and Pap smear for women, colonoscopy and any other tests physicians may require.

You will also have a social work consult, a dietitian assessment, and a dental exam. During the evaluation process, depending on test results, additional assessments may be needed.

After you have completed your pre-lung transplant evaluation, a multidisciplinary transplant committee consisting of pulmonologists, cardiothoracic surgeons, nurses, social workers, financial counselors and your insurance company review your data and collectively decide if lung transplantation is an appropriate option for you.

A transplant pulmonologist will start the evaluation process, but you make the final decision to undergo the transplant evaluation and be placed on the lung transplant list. Lung transplantation is a major surgery with its risks and possible complications. Patients are encouraged to go home and discuss it with their family/loved ones rather than making a decision during the initial clinic visit.

A mentor – someone with your similar lung disease who had a transplant at our facility – can be provided to you. These transplant patients know the journey well, and can help you with your decision.

Factors to consider:

  • Type of lung disease
  • Severity of lung disease
  • Age
  • Results of pre lung transplant evaluation
  • Patient symptoms

University Transplant Center does not perform combined heart/lung transplants nor do we offer living lobar lung transplants at our facility.

Back to top


Once the team is in agreement, you will be placed on the lung transplant waiting list.
The waiting list is a nationwide computerized network managed by the United Network for Organ Sharing (UNOS). UNOS is a non-profit, scientific and educational organization that administers the nation’s only Organ Procurement and Transplantation Network (OPTN).

Their duties include matching donors to recipients and coordinating the organ sharing process 24 hours a day, 365 days a year, maintaining clinical transplant databases covering every transplant that occurs in the United States, monitoring every organ match to ensure adherence to policy and providing assistance to patients, family members and friends.
UNOS will calculate a Lung Allocation Score that will be assigned to you. All patients waiting on the lung transplant list are given a Lung Allocation Score (LAS).

Patients in need of lung transplantation are prioritized by LAS. The LAS will be used to estimate the urgency of illness and the probability of success after a lung transplant. This information includes lab values, test results and disease diagnosis and is used to calculate a Lung Allocation Score from 0-100 points. The higher the patient’s score, the higher their priority on the list. UNOS requires us to update your information and some testing every 6 months. The LAS is designed to change as your lung disease changes.

You are matched to a donor by your blood type and size. Criteria that are not used in the computer matching system are gender, religion, celebrity and financial status.

You have the right to be double listed for a transplant at another transplant center as well as University Transplant Center. You may call UNOS at 1-888-894-6361 for more information.

While you are waiting:

  • Attend our pre-transplant class.
  • Stay as healthy and active as you can.
  • Join our support group for pre- and post-transplant patients.
  • Keep in touch with the Transplant Team.
  • Notify us of any telephone, address or insurance changes.
  • Have a small suitcase packed.
  • Contact the Transplant Team if you are going out of town.
  • Contact the Transplant Team if you have a blood transfusion, infection, surgery or any change in your medical condition.
  • Carry a pager or cell phone and provide us with all relevant contact numbers.

Back to top


Receiving the Call
A Transplant Coordinator will call you on your cell phone and/or at home. We will ask you to come to the hospital immediately. Do not eat or drink after we call you unless we tell you otherwise. Bring your medications with you. Have a designated driver and a back up transportation plan to the hospital. Bring health insurance information.

Do not bring money, credit cards, jewelry, flowers, plants, pets, fresh fruits or vegetables or children under 14 years of age.

Once you arrive at the hospital, you will report to the 12th Floor Transplant Unit. You will have a physical examination by one of our doctors, with blood work, a chest x-ray and electrocardiogram.

Your transplant could be cancelled if you have any signs of infection, the donor lung has any problems, medical conditions prohibit surgery or you test positive for nicotine or drug/alcohol use.

While you are at University Transplant Center, you will stay in the J. Kent Trinkle Transplant Unit, dedicated to the compassionate care of the patient and their family. The unit offers private patient rooms, comprehensive hospital electronic medical record (EMR), physicians in hospital 24/7, comprehensive multidisciplinary care, and bilingual staff.

Procurement
While you are being prepared for surgery, the Transplant Team will be retrieving the donated lung(s). Lungs come from a deceased donor. There is some consideration given to the donor size compared to your body size. We evaluate every donor lung by donor history, lab results, visual exam and biopsy, if indicated, to determine if the lung(s) is right for you. It is possible the lung will not be suitable for transplant; in this case the surgery is canceled. If this happens, you will be sent home.

Back to top


Lung Transplant Surgery
The lung transplant surgery will require 3 to 4 hours for a single-lung transplant, and 4 to 8 hours for a double-lung transplant. The operation begins when the donor lung(s) arrives in the operating room. Your lung is removed and the donor lung is placed in the chest cavity. The surgeon connects the blood vessels to and from the lung (pulmonary artery and pulmonary vein) and the main airway (bronchus) of the donor lung to your airway. The same connections are made for the other lung if you are having a double-lung transplant.

Transplant Intensive Care Unit (TICU)
After your transplant surgery, you will go to the Transplant Intensive Care Unit (TICU) where you will be monitored very closely. The effects of anesthesia will take several hours to wear off. Most patients cannot remember the first 24-48 hours of their TICU stay. You will wake up feeling a little confused and your wrists will be lightly restrained to prevent you from pulling out any tubes or lines. You will have IV lines to provide fluid and necessary medications to keep you stabilized. You will have a breathing tube down your throat. This tube is connected to a ventilator (breathing machine) which will breathe for you until you are capable of breathing on your own.

If you have an uncomplicated surgery, you will spend about one day on the breathing machine and about 1-3 days in the TICU. You will also have another small tube in your nose that reaches your stomach. This is called a nasogastric (NG) tube. It will help drain the contents of your stomach and prevent nausea. This will be removed once the effects of the anesthesia wear off.

You will have drainage tubes coming from your chest called chest tubes. They drain fluid and air. These tubes are connected to suction for a few days to help the lungs re-expand fully. These chest tubes will be removed once you are no longer draining fluid and the lungs are fully expanded.

You will have a catheter going to your bladder to monitor your urinary output. Once you are able to go to the bathroom on your own the catheter will be removed.

Transplant Telemetry
After you are stabilized, you will be sent to the Transplant Telemetry Unit. The total average length of your stay from the time after your surgery is approximately 10 days. As you get better, the IVs, tubes and catheters are removed. You may or may not be on oxygen at this point. In Transplant Telemetry, your progress will be monitored. Physical Therapists will be working with you to determine your strength and ability to go home as opposed to being admitted to our rehabilitation unit. The Discharge Coordinators will be providing you with detailed information on your medications and daily care routine. They will be getting you ready to go home.

Back to top


All post-lung transplant patients are at high risk for developing rejection and/or infection during the first three months after their transplant. It is necessary to monitor all patients closely during this period. You will be required to come to the Transplant Clinic once a week for the first three months for testing and consultation with your Transplant Pulmonologists. If the recovery is uneventful during the first three months, trips to the Transplant Clinic will become less frequent.

You will also follow instructions for self-monitoring of your weight, blood pressure, pulse, temperature, lung function, and, if you are diabetic, blood sugar. Of primary importance, you will be instructed not to smoke, limit your use of alcohol and follow a good nutrition plan. As soon as your physicians believe you are able, you will start a program of exercise rehabilitation. This may be conducted at the medical center or at a rehabilitation facility under the supervision of your physicians.

Medications After Transplantation
The body tries to dispose of anything that it considers foreign. After your lung transplant, your body will try to reject your transplanted lung(s). In order to prevent rejection, we will give you medications called immunosuppressant medications. These medications help the body control the cells that will try to reject your transplanted lung(s).

These medications suppress your immune system. Therefore, you may be more susceptible to infections. We will also give you medications that will help your body fight infections. You will be taking more medications post-transplant than you did pre-transplant. This medication will be prescribed life long unless otherwise instructed by the Transplant Physician.

You must take all your medications exactly the way the doctor orders them. Each one of the medicines help you keep your transplanted lung(s) healthy. If you stop taking your medications, you will reject your transplanted lung(s).

Medications after Transplant

  • Immunosuppressant, or “anti-rejection” – special medications that are designed to suppress (or lower) your immune system
  • Steroids – first line of defense for rejection
  • Antibiotics – help your body prevent bacterial infections
  • Antifungals – help your body prevent fungal infections
  • Antivirals – help your body prevent viral infections
  • Pain medications
  • Antihypertensive – used to treat high-blood pressure
  • Diuretics – help control fluid “water pill”
  • Vitamins and minerals
  • Ulcer medications

Complying with Transplant Treatment
Compliance with your medication regimen is imperative to the success of your transplant. To make this transplant successful you will be responsible for attending Clinic appointments, maintaining your diet, taking your medications, losing or gaining weight as directed, monitoring your fluid intake and blood pressure, maintaining alcohol, drug and tobacco abstinence and attending pulmonary rehabilitation.

Occasionally, some patients are found to be non-compliant with their medical regimen. When that happens they have problems with:

  • Getting placed on the lung transplant list
  • The body rejecting the transplanted lung
  • Being removed from the transplant list
  • Poorer quality of life
  • Worsening physical health
  • Death

For more information about maintaining the medical regimen associated with lung transplantation, see our patient guide.

Contacting the Donor Family
University Transplant Center strongly encourages written correspondence between organ donor families and transplant recipients. All correspondence is anonymous and identities are kept confidential.

Transplant recipients may want to contact the donor family to express their sincere gratitude and to learn about their donor. However, this is a very personal decision and your decision alone.

You may or may not hear from your donor family. Every donor family is different. Some donor families feel that writing about their loved one helps in the grieving process. Other families find writing about their loved one is too difficult.

For more information on how to contact your donor family, please call 1-888-336-9633 to speak to the Organ Donor Family Coordinator.

Back to top

 

Banner-OrganDonation.jpg

UHS-Foundation-Banner.jpg

UNOS-banner.jpg

Banner-AmericanLung.jpg