Breathing Life into Lung Transplant Research!

Before You Transplant


THE EVALUATION PROCESS    |    FEELING OVERWHELMED    |    PREHAB    |    WAITING ON “THE CALL”
PACKING A BAG    |    GETTING THE CALL    |    PAYING FOR YOUR TRANSPLANT

THE EVALUATION PROCESS

Because of a shortage of viable organs, there are criteria you must meet to qualify for a lung transplant. Transplantation is a major surgery that involves scarce resources, and a medical evaluation is important in determining whether you are ready for surgery. It is also crucial to your having the best possible outcome from a transplant. To qualify for a lung transplant, your lung function and overall health must be poor enough to justify the operation, but not too poor to survive and thrive after surgery. This optimal period for a transplant is often referred to in the medical community as “the window,” and your pulmonary transplant team will help you determine when you are in this window of opportunity. Physical, mental, and oftentimes emotional support is necessary from your caregivers to help you maintain your well being during this period.

The transplant team will order several tests during your evaluation. They may include:

  •  Tissue and blood typing
  • Heart catheterization
  • Colonoscopy
  • Esophageal manometry
  • 24-hour pH study
  • Psychiatric evaluation
  • Gynecological check-up

These tests not only ensure that you will have the best chance of surviving, but they also give the transplant team an idea of how well you would cope both physically and mentally if given a transplant.


FEELING OVERWHELMED

Part of the pre-transplant process that sometimes gets overlooked is the emotional component of your journey. Transplantation, despite providing a wonderful new lease on life, can be tremendously overwhelming. When you are in the worst health of your life, you have the added burden of wondering whether you will be put on the waiting list for lungs, and if you are, when your life-saving call will come. Your family and friends will probably be worried, and sometimes they may be far away if you have to relocate closer to your transplant center.
Throughout the evaluation process, you may feel a variety of feelings such as hope, fear, anxiety, stress, and homesickness, if you are required to relocate. Most centers have several staff members to help deal with these emotions. Also, a good pre-transplant rehabilitation program will focus on more than the physical aspect of preparing for a transplant. You will need to be in the right place mentally to undergo the surgery. In order to be motivated to physically rehabilitate, you will need hope and determination to prepare for the hard work ahead and stay focused on the reward of a new, more active life.


PRE-TRANSPLANT REHAB, OR “PREHAB”

Most lung transplant centers require you to meet certain exercise goals before they will list you for a transplant. These can include walking a predetermined distance in a given time, completing exercise classes, riding a recumbent bike and gaining or losing weight to optimize your chances for a successful recovery. These steps are often required when you are at your physical worst. You, therefore, may need more liters of supplemental oxygen to maintain adequate saturation while resting, and even more upon heavy exertion. Your body may be tired from a forced sedentary lifestyle brought on by failing health. You will be assessed for your oxygen needs and evaluated to establish a baseline for what you can achieve before surgery. Once listed, you must continue rehabilitation at an optimal level until the day you get the call for surgery.


WAITING ON “THE CALL”

Once you have been evaluated, have begun a physical therapy program, and have met the qualifications for a transplant, you will probably be waitlisted for lungs shortly thereafter. The timing of this can vary. Some patients’ cases are expedited, while others have the luxury of training to get into better physical shape before surgery. Once you are listed, the waiting period can vary from a few hours to several years. Your health might range from being stable enough to wait at home to being on life support at the transplant center.
Time on the waiting list is only one consideration in determining the likelihood that you will receive a call. Other factors that will be considered when your name comes up include tissue typing, the absence or presence of antibodies, chest cavity size, and your lung allocation score. There is no way to tell when organs will become available.
For example, if Chris, who weighs 200 pounds and is 6’5,”is first on the list and has been waiting longer than Lela, who is 5’4” and 115 pounds, but the lungs that become available are from a small-framed person and would fit Lela’s chest size better, then the lungs would go to her.

For more information, read the Questions and Answers for Transplant Candidates about Lung Allocation from the United Network for Organ Sharing (UNOS).


PACKING A BAG

Once you are waitlisted, you should pack an overnight bag and keep it somewhere where you can retrieve it quickly. Lungs will survive for a limited time outside the body. So once lungs are procured from a donor, the clock starts ticking. Items you should include in your overnight bag are:

  • Your insurance card
  • Photo ID
  • Enough oxygen to get you to and from the hospital (in case the surgery is canceled)
  • Medicine for 24 hours
  • Toiletries
  • Phone numbers of friends and loved ones
  • Your cell phone

GETTING THE CALL

When you get a call about a potential match, you will be asked to go to the hospital and wait. During this time, you will have several blood tests, a dose of anti-rejection medicine, and you may be given an anti-microbial soap with which to bathe. Meanwhile, several tests will be run on the donor and the organs themselves to guarantee viability. If, for whatever reason, the organ is not viable, this is known as a “dry run.” You may also experience a dry run if you are called in as a back-up patient and the patient ahead of you is able to receive the lungs. If this happens, the hospital will send you home to wait on the next call. If the organ is viable and a good match for you, then the team of nurses, anesthesiologists and other hospital staff will prepare you for surgery. They will start an IV, give you consent forms to sign and then take you to the operating room.
The very end of a patient’s time on the list before undergoing the transplant is often a joyous time. You may have time to reflect on what is about to happen, and you will be able to lay down the burden of being so sick.


PAYING FOR YOUR TRANSPLANT

The cost of a lung transplant in the United States varies among hospitals but is typically hundreds of thousands of dollars. When you add the costs of the medications that you will have to take afterward, the expenses in the first year alone can approach $1 million. Transplant centers have financial advisers on staff who will help you figure out how to pay for your transplant and after-care.

The money for your transplant will likely not come from only one source. Your pool of resources may include private insurance, Medicare, Medicaid, fundraising campaigns, and charitable organizations. It is important to educate yourself about your options. Research what your out-of-pocket expenses will be. Many plans pay 80 percent of the cost, leaving you to pay 20 percent. Some insurers will cover transplant related expenses, such as lodging and gas. Check to see if that benefit is part of your plan and ask whether there is a cap on how much the insurer will pay.

Many transplant centers require you to prove that you have a certain amount in the bank (or in a 401-k or IRA) before they will list you. The hospitals want to know that you will be able to pay for your medicine, travel, food, transportation, and lodging in the first year after the transplant. Without anti-rejection medicine after the surgery, your body will reject your new lungs and they will fail. The financial requirement, therefore, not only gives you the best chance for recovery, but it also ensures that scarcely donated organs will not be “wasted.”

If your insurance co-payment is a financial burden, ask your transplant center about creating a monthly payment plan for you. Propose an amount that you can handle. Hospitals are often willing to negotiate a payment plan.
Your transplant team realizes that the costs associated with transplantation can seem overwhelming. The team may direct you to several organizations that help transplant patients raise money. Some are free, and some may charge a fee. You can often fundraise online through these organizations, which may be easier for you and your donors.

Some of these organizations are:

National Foundation for Transplants
Children’s Organ Transplant Association
Help Hope Live
World Children’s Transplant Fund 
Go Fund Me

Some state programs offer financial assistance to residents needing a transplant, including Rhode Island, Massachusetts and Georgia. Check to see if there is a program specific to your state, too.

Rhode Island
Massachusetts

Georgia
For a list of more resources, please see Transplant Living, a service of the United Network for Organ Sharing.

In addition to employing one of these organizations, you could hold a community fundraiser to help with your costs. Patients have raised money through bake sales, yard sales, benefit concerts, and walks, for example. If you communicate your needs to the people around you, they will often rally to help. Your friends and family may feel helpless because they cannot do anything to improve your health, but they can organize fundraisers on your behalf.
Finally, think resourcefully. If you have a friend in the region of your transplant center and you have to relocate, ask him or her to spread the word that you are looking for temporary housing. Sometimes people will donate a room or vacant house. Use social media to find connections. If you or a family member stays in hotels often, enroll in a rewards program and use the accrued points for lodging during your recovery period.
The financial burden of a lung transplant is beyond most people’s normal scope of medical expenses. Don’t be too proud or embarrassed to ask for the help you need.

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