Deciding that a transplant is right for you is a process that you will carry out with your team of medical professionals. Most candidates experience a significant wait between becoming listed and receiving a transplant due to the fact that there are more transplant candidates than there are donor organs. This information is meant to help you understand the process of listing and answer questions about life before transplant.
Choosing a Transplant Center
Once you and your primary physician decide it is time for you to go on the lung transplant wait list you will start working with a transplant team at a transplant center in order to register and prepare for the transplant. A transplant center is a hospital where transplants are performed. Every transplant center in the U.S. is a member of the Organ Procurement and Transplant Network and must meet specific safety requirements.
Your transplant team will include all or some of the following:
- Your transplant coordinators will oversee the entire transplant process. He or she will oversee your evaluation, treatment and follow-up care. The transplant coordinator will be available to address any questions you may have before, during or after the transplant.
- The transplant surgeon will perform the transplant surgery and has received special training to do transplants.
- The transplant physician is a doctor at the transplant center who will manage your medical care, tests and medications. While the transplant physician does not perform the surgery she will be responsible for your care before and after the transplant.
- The anesthesiologist is the doctor who will put your to sleep during surgery and help manage any post-operative pain you experience.
- The transplant unit staff nurses will help care for you both before and after the transplant. They will also provide education about your tests, medications, and life after the transplant surgery.
- A dietician will make an assessment of your nutritional needs and recommend nutritional guidelines if you need to gain or lose weight prior to transplant.
- A physical therapist will evaluate your exercise capacity and may recommend exercises for you to do to increase your strength and endurance prior to surgery.
- A financial coordinator will work with you, along with other members of the transplant team, insurance companies, and hospital administration to coordinate and clarify the financial aspects of your care before, during and after your transplant. The financial coordinator will help you determine how you will pay for your transplant.
- A social worker will help you and your family cope with the strain that listing and undergoing transplant surgery can put on you and your loved ones
- Your family doctor, specialist or primary care physician will work with the staff at the transplant center to coordinate medical care.
When considering transplant centers be sure that you look for a center with an experienced team, rather than a single star surgeon. The quality of care you receive from all of the individuals listed above will be critical to your transplant success. A list of Medicare-approved centers is available online (PDF). Medicare will only cover transplants that take place at one of these pre-approved centers.
Talk with other people who have had transplants at the center(s) you are considering and network with people who received transplants at other centers. The Second Wind Transplant Association’s website has a message board that may be helpful for such networking located at: http://www.2ndwind.org/cgi-bin/yabb2/YaBB.pl.
Finally, don’t be afraid to ask questions! Talk with the transplant team at the center(s) you are considering and ask them the following questions:
- How many lung transplants have been performed at this center?
- How man PH patients have been transplanted to date at this center, and how many this year?
- What type of transplant is typically done for my diagnosis?
- How many surgeons perform this kind of operation at this center?
- Approximately how many lung transplants does a particular surgeon perform each year?
- What is the patient survival rate?
- How long is the average wait for a lung transplant at this center?
- How many patients are on the local waiting list?
- How many other patients on the local waiting list share my blood type?
- How many patients have died while waiting?
- Do I need to move closer to the transplant hospital after I am put on the waiting list? If so, do you provide housing before the transplant, and how much will it cost?
- If I do not have to live close to the transplant center, how will I get there when I get the call?
- How quickly do I have to be at the hospital after a donor is found?
- How much will my transplant cost? Is there someone on the transplant team I can speak to about financing the transplant?
- How long is the average hospital stay?
- Does the center provide housing after the transplant operation? If so, how much will it cost?
- Does the center have a support group? If not, is there one in this area?
- What is the nurse-to-patient ration during the recovery process in the ICU and in the regular unit?
- How familiar is your staff with Flolan and Remodulin during the transplant process? (If applicable)
You can also use the Scientific Registry of Transplant Recipients http://www.ustransplant.org/ to compare centers.
The Lung Allocation Score
Once you have a transplant team your priority for transplant must be established. Until the spring of 2005 lung transplant priority was based on the amount of time candidates were on the waiting list. In order to more effectively utilize available organs the lung allocation guidelines were revised in 2005 so that each candidate is now given a score reflecting both the severity of each candidate’s illness and their potential for post-transplant success. This score is termed the Lung Allocation Score (LAS), below are several important facts about the LAS, however more information can be found from the United Network for Organ Sharing at www.unos.org or by phone at 1-888-894-6361.
- All lung transplant candidates ages 12 and up receive a lung allocation score.
- Candidates below the age of 12 are prioritized based on their time on the waiting list, blood type, and distance from the hospital.
- The LAS scale ranges from 0-100; a higher score reflects a higher priority for transplant.
- Individuals with certain coexisting medical conditions are not eligible for transplant, these conditions include:
* HIV infection
* Bone marrow failure
* Cirrhosis of the liver or active hepatitis B or C infection
* Chronic renal failure
* Malignancy precluding long-term survival (A history of cancer does not necessarily disqualify you for transplant, speak with your doctor if you have questions)
* Other life-limiting conditions
* Active tobacco smoking or substance abuse
* Significant coronary artery disease or peripheral vascular disease
* Sever symptomatic osteoporosis
* Sputum growing antibiotic pan-resistant bacteria
- An individual’s LAS is determined through a pre-transplant workup that is done prior to listing. Medical information used to determine the LAS includes:
* Forced vital lung capacity
* Pulmonary artery pressure
* Oxygen levels at rest
* Age
* Body Mass Index
* Insulin dependent diabetes
* Functional Status
* 6-minute walk test
* Ventilator use
* Creatine levels
* Diagnosis
- This medical information must be updated every six months, and may be updated more often if your medical team deems it necessary
- If your medical professionals do not feel that your score fully reflects your circumstances they can ask that it be reviewed and possibly altered by the Lung Review Board.
- The special guidelines approved by the Lung Review Board when considering an appeal for a patient with pulmonary hypertension are the presence of 1) patient deteriorating on optimal therapy, and 2) right atrial pressure greater than 15 mm Hg, and 3) cardiac index less than 1.8 L/min/m2. If these criteria are met and the appeal is approved, then the LAS is increased to the 90th percentile of all the LAS’s nationally at the time of the request.
- There is no minimum LAS necessary to receive a transplant. When lungs become available the hospital will do a “match run” of the waiting list to determine candidates in the area with matching blood type. The matching candidate with the highest LAS will have the priority to receive the transplant.
- In the case that two candidates in the area have the same LAS wait time will be used to break the tie. This is the only case in which wait time is used to determine priority for candidates over the age of 12.
- The medical team at the transplant center and the candidate will always have the choice to determine whether a transplant is the right action at that time and whether the lungs that become available are the right lungs.
The Emotional Impact of Listing
The process of becoming listing as a lung transplant candidate and the ensuing wait period can be an extremely stressful time for both the patient and those who care for him or her. A range of emotions and behavioral manifestations of these emotions may come with the listing and waiting process. It is important to be open about your feelings and have someone to talk about them with.
Keep in mind that it is normal to be stressed at this time, the battery of tests to get listed, the financial aspects of transplant,the possibility of relocation and in some cases, false alarms for donor organs are all stress-inducing. Other emotions that are common in transplant candidates include anxiety and frustration at having to wait or guilt that the donated organ will come from a deceased donor. Again all of these feelings (and many more) are normal and are perfectly ok to feel, but it is important to develop positive coping skills to get through this difficult time.
While you are waiting a few things to keep in mind:
- Organ donation and transplant is consistent with most major religious denominations in the U.S. If you are having misgivings for religious regions speak with a spiritual leader.
- Organs do not have memory. Contrary to what some people believe, personality traits cannot be transferred from donor to recipient during organ transplantation.
- There are positive aspects to waiting; this period provides time for reflection and preparation for your life post-transplant.
There are many resources and different approaches to help deal with the broad range of emotions that transplant candidates feel. The United Network for Organ Sharing proves a state-by-state support group list for organ recipients at www.transplantliving.org/Community/supportGroupListing.aspx. Your transplant center may also provide emotional support or be able to connect you with a support group in your area.
In addition to attending a support group, other helpful approaches include:
- Develop a new hobby
- Add structure to your daily life
• Talk through your feelings and emotions
- Breathe
- Pray
- Set goals for the future
- Engage in regular exercise
- Maintain contact with friends and family
- Use relaxation techniques such as meditation, visualization, progressive muscle relaxation, or yoga
- Ask your doctor to recommend a prescription or over-the-counter medication to treat anxiety
Now That I am Listed, What’s the Next Step?
In a word, the next step is waiting. During this time it will be essential that your transplant team be able to contact you should an organ become available. Many transplant centers give transplant candidates pagers in case they cannot be reached by phone. During the wait period you must follow all instructions from your transplant team regarding communication, and must develop a plan for being transported to the transplant center when a donor organ becomes available.
Physical Preparations:
The waiting period is a good time for you to make sure that you are in the best mental and physical shape possible to increase your chances of transplant success. See the section below on mental wellness during the waiting period. In terms of physically wellness the two key components are nutrition and exercise. The stronger you are gong into the surgery, the better your body will be able to cope with the stresses that the transplant operation entails.
Good nutrition is essential during the pre-transplant period, you should continue to follow the low-sodium diet suggest for PH patients. (For tips, see the Low-Sodium diet fact sheet here) Your transplant program may also have a requirement that you are within a certain percentage (either above or below) your ideal body weight and you should work with your doctors to establish a diet plan that will help you achieve this goal.
While exercise may be difficult due to decreased lung capacity you may be able to do some exercises to increase your body’s strength and endurance in preparation for the surgery. Being in better physical shape will not only increase your chances for a successful transplant, but will make the recovery easier after the surgery is over. This is something you should talk about with your transplant team.
Because being in the best physical state possible is important prior to transplant, you must contact your transplant center if:
- You experience any significant change in your health status
- You develop an infection, start antibiotics, or your doctor changes your medications
- You are admitted to a hospital for any reason.
Legal Preparations:
In addition to these physical preparations, there are some other considerations you must take prior to transplant. Though your transplant team will do everything possible to ensure the success of your transplant, it is possible for transplant candidates to become critically ill before, during or after lung transplant. Should this occur, it will be helpful if you have already established and advanced directive and a durable power of attorney.
Adults 18 years and older who are considered mentally competent have the right to make decisions about their medical treatment. If you want to control decisions about your healthcare, even if you become unable to make or express these decisions yourself, you will need an advanced directive. An advanced directive is a written document in which you state what medical care you would want in the event that you lose the ability to make decisions for yourself.
Durable power of attorney means that you name someone to make your medical decisions for you if you later become unable to make or express these decisions yourself. Power of attorney is assigned through a legal document in which you name the individual and say what medical treatments you would want and which you would not want. Should you decide to name a power of attorney you should choose someone who you trust and share your wishes with the person before putting them into writing.
Getting “The Call:”
When a donor organ becomes available the hospital contacts the local Organ Procurement Organization (OPO), which works with hospitals to identify potential organ donors and to find medically suitable transplant recipients. The local OPO enters information about the donor organ into the UNOS computer and obtains a match run sheet- a list of potential recipients ranked according to medical criteria. Each donor organ will generate a differently ranked list of potential recipients. After printing the list, the OPO contacts the transplant surgeon caring for the top-ranked patient and offers the organ. If you have the priority of the candidates in your area you will be called to come to the transplant center. You will need to arrive at the center within a few hours (the transplant center will give you a specific time frame.) After you receive this call do not eat or drink anything unless your transplant team tells you otherwise. When you arrive at the transplant center you will go through a pre-operative work up which will include blood and urine test, and possibly a chest X-ray, EKG or other tests.
Sometimes transplant candidates arrive at the hospital and undergo the pre-operative tests, only to have the transplant cancelled due to deterioration of the donor lungs. While these false alarms can be frustrating, having a transplant cancelled due to deterioration of the donor has no negative impact on your LAS or physical capacity to undergo a future transplant.
Financing a Lung Transplant
Lung transplants can be a great financial burden, there are a variety of medical and non-medical costs associated with the transplant process including pre-transplant evaluation and testing, surgery, follow-up care and testing fees, rehabilitation, food, lodging and travel expenses if you must relocate near the transplant center, child care, and lost wages if your employer doesn’t pay for the time you or family members spend away from work.
While your social worker and financial coordinator will help you understand how you can best afford these costs, the following is some helpful information to clarify the process.
The first thing to come to terms with is that lung transplants are very expensive procedures. The United Network for Organ Sharing reports that a double lung transplant, including the organ procurement fee, hospital costs, physician fees, and the cost of evaluation, follow-up and immunosuppressant drugs can come to about $543,900. A heart and lung transplant can cost $655,600 or more. Please note that these are estimates, and that each institution establishes their own price for transplant surgery. Moreover, these costs do not include non-medical costs associated with transplant (i.e. transportation, lodging, etc.)
There are several sources of funding that patients typically turn to in order to fund their transplant, these include:
- Private insurance
- Medicare/Medicaid
- Prescription drug assistance programs
- The Veterans Administration
- Charitable organizations
- Advocacy groups
- Fundraising campaigns
Private Insurance: If you have private insurance through an employer or personal policy read your policy carefully to understand the terms and benefits regarding transplants. Contact your insurance company if you have any questions, and keep a log of any conversation you have with your insurance representative or the hospital billing office. If you still have questions after speaking with the insurance company contact your state insurance commissioner.
Though your insurance will cover some of the costs of transplant you will still be responsible for deductibles, co-pays, or any charges that exceed your insurance “cap” (the maximum amount of money an insurance company will pay in a lifetime, a year, or for a certain procedure.) Be sure to pay your insurance premiums on time so that you do not lose your insurance.
Tips for dealing with your insurance company:
- Make sure that you read and understand your policy
- Contact your insurance company, financial coordinator and/or state insurance commissioner if you have any questions.
- Keep your premium payments up to date and follow the rules of your insurance company to avoid a lapse or loss of insurance
- If your transplant center asks you to be involved in any experimental procedures or studies, be sure to ask your insurance company if your policy will cover the payment.
- Keep copies of all medical bills, insurance forms and payments.
- Ask your insurance company about pre-certification or using a specific provider
- Make sure to keep your transplant center informed about your insurance, particularly if you have more than one insurance company.
- Always keep a log of your conversations with your insurance company or anyone in the hospital’s billing office.
Medicare – Medicare does not always pay all of your medical expenses; payment is based according to a set fee, which may be less than the actual cost of the transplant. Therefore, patients covered by Medicare will be required to pay deductibles, co-pays and various other expenses. A private insurance policy, called a supplemental or “Medigap” policy can help cover some of the expenses that Medicare does not cover.
To receive full Medicare benefits for a transplant, your transplant center must be a Medicare approved facility that meets certain standards. If you have questions about the type of Medicare coverage that you have, or how Medicare can help pay transplant expenses you can call the Medicare hotline at 1-800-633-4227 or visit Medicare online at: www.medicare.gov.
- If you have Medicare Part A it covers certain lung and heart/lung transplants in Medicare approved facilities as well as inpatient hospital care and some home healthcare.
- If you have Medicare Part B it covers doctors’ services, outpatient hospital care, and anti-rejection drugs.
- If you have Medicare Part D it can help pay for prescription drugs not covered by Part A or B.
A full list of what is covered by each Medicare plan is available on the Medicare website listed above.
Prescription Drug Assistance Programs
Many drug companies provide medications for patients who are financially needy. A full directory is available on the Pharmaceutical Research and Manufacturers of America (PhRMA) website at: https://www.pparx.org/SelectMedication.php.
The Veterans Administration
You may be eligible for VA benefits if you have been honorably discharged from the military. If you first became ill while in the service or are indigent, you may be eligible to receive a transplant at a VA medical Center. To find out if you qualify contact your local Veterans Hospital or VA office.
Additionally, TRICARE is a regionally managed program for active duty and retired members of the uniformed services, their families and survivors. In order to receive benefits you must be pre-authorized by your regional TRICARE, to do so your transplant physician must submit a summary to the TRICARE office. TRICARE may help cover lung and heart/lung transplants. For more information call (303) 676-3526 or go to www.tricare.osd.mil.
Advocacy Groups & Charitable Organizations
Some advocacy groups and charitable organizations provide limited financial assistance to transplant patients through grants and direct funding. These groups provide other aid as well, including information, patient support, and help in dealing with insurance companies. A list of organizations that may be able to provide some financial assistance to transplant patients and their families is available online at www.transplantliving.org/beforethetransplant/finance/directory.aspx.
Fundraising Campaigns
Some transplant patients carry out fundraising cmpaigns as a source of financing. Use caution if you do this; if you are on Medicaid, for example, donated money may be counted as income and disqualify you for Medicaid coverage. You should establish a trust fund or special account to put donated money into. Check all legal requirements in advance by contacting city and county governments and consulting with a legal advisor. Once you are ready to seek donations, consider contacting local newspapers and radio or television stations. Enlist the support of local merchants and other sponsors to promote or contribute to your events. For inspiration, check out what other PHers are doing to raise funds for PHA along with awareness at: http://www.phassociation.org/Awareness/specialevents.asp.
