Talking About a Lung Transplant

The prospect of needing a lung transplant can be emotionally difficult. Discussing the possibility of transplant early on — even before you may actually need it — will give you and your family more time to consider it as a treatment option in the future. Lung transplant outcomes have improved in recent years, and lung transplant can lengthen and improve the quality of life for many.

"It was drastic and seemed to come out of nowhere; my forced expiratory volume (FEV₁) fell from 45% to 26% seemingly overnight. I found myself so out of breath just taking a shower that I'd have to sit down and recover for a few minutes before being able to get dressed." — Jen Bleecher, adult with CF, from the CF Community Blog

Cystic Fibrosis Foundation guidelines recommend that your CF care team start discussing lung transplant with you as a future treatment option long before the need for transplant arises. The guidelines define this as when your forced expiratory volume in one second (FEV₁) is less than 50% of predicted. This does not necessarily mean that you need a transplant, only that transplant might be considered as an option at some point in the future.

Download this graphic to help you start a conversation about the lung transplant process with your family and care team.

Why Start Early?

It is important that all people with CF who need a lung transplant, or may need one in the future, understand the transplant process and receive the information to make an informed decision. By having a conversation with your CF care team about your goals and what the transplant process is like, you can work through the emotions or feelings you may have about lung transplant.

Discussing transplant with your CF care team before you need one gives you time to learn about the type of support you'll need from your family and friends, and how best to partner with your CF care team to map out what the journey might look like for you.

An early referral to a transplant center does not necessarily mean you will need a transplant soon. An early referral can give you the chance to meet the multidisciplinary transplant team before a formal transplant evaluation. In addition, getting to know your transplant team prior to the need for listing may help identify and address any potential obstacles to you being listed for transplant in the future. You will work with the transplant team closely before and after the lung transplant surgery.

"Psychological services were available at my transplant center, and each patient is assigned a psychologist. I utilized my psychologist prior to transplant to cope with some anxiety surrounding intense pain after surgery. Additionally, while on the waitlist, [the transplant center] offered group psychoeducation sessions that focused on coping skills, anxiety reduction, and mindfulness." — Jenavese Armstrong, adult with CF, from the CF Community Blog

Lung transplantation is a process in which you and the people who make up your social support team will need to make thoughtful decisions throughout many phases. These decisions will affect you and your social support team medically, logistically, financially, socially, and emotionally. Starting the conversation early will give you more time to plan ahead by:

• Getting the help you need to work on anything that could prevent you from being a candidate for transplant.
• Making it easier for you and your family to make informed decisions.
• Securing the necessary financial resources while you are still well enough to do so.

Anyone living with CF knows it can be unpredictable. Although some may experience a slow decline in lung function, that decline can also happen very quickly, making it necessary to be referred for a lung transplant with little time to prepare. 

The timing of the transplant procedure itself is a balancing act. People need to be sick enough to need a transplant, but also well enough to recover from the transplant surgery. This is known as the transplant window. By starting the referral process before you are in this window, you'll have more time to prepare. 

Many people with CF want to delay a lung transplant as long as possible, but there is risk associated with this. Each year, approximately 10% of people with advanced cystic fibrosis die without a transplant, while only 6–8% undergo transplant as a life-sustaining treatment option.

The median survival for adults with CF who had lung transplant between 1992 and 2017 is 9.9 years. That means that half of the people with CF who have had lung transplants were alive 9.9 years after transplant.

"About 10% of the patients who did not get a transplant die each year. So, the risk in the first year, second year, it's about 10% for individuals with FEV₁ of about 30% of predicted. That gives us some idea of what the population 'at risk' looks like. Based on these considerations, we've come to a consensus that we want to recommend early referral." — Joseph Pilewski, MD

When considering a lung transplant as a future treatment option, you and your social support team of family and friends will want to learn as much as possible about the different phases of the transplant journey and the types of decisions you'll be asked to make during each phase.

Should you move forward with a lung transplant, it is important to form a strong relationship with the transplant team and ensure you feel respected and heard by them. As you move through the evaluation process, you will learn about the different roles on the transplant team and how the team members work together. You will develop a working relationship with the transplant team as you await donor lungs and the relationship will evolve after transplant. Learn about transplant centers across the country, including the one you may be referred to by your CF care team.

As you go through the pre-transplant process, you are preparing for scenarios that will arise after transplant — for example, having multiple appointments in a short period of time for your transplant evaluation prepares you for the many appointments you may have soon after transplant. Communication is vitally important as you learn about the new medications, common symptoms, and challenges after transplant.

Physically
Transplant teams select people they believe will have successful transplants, which begins with your physical health. By introducing a lung transplant referral before you need to be listed, you and your care team will have time to develop — and act on — a plan to ensure you are in the best physical condition possible. This can include creating an exercise plan that can help you maintain lung function, achieving a healthy weight and maintaining it, and getting your blood sugar under control if you have diabetes.

Emotionally
Many emotions are associated with the prospect of going through a transplant, including anxiety, depression, and even simply coming to terms with having a progressive disease like CF. Your care team may be able to help you find the support you need to work through these and other emotions you may be experiencing during this process. Getting help to cope with emotional challenges should not affect transplant candidacy, but not getting help could hinder your access to medical care, including transplant.

Financially
Transplants are expensive. According to the Centers for Medicare & Medicaid Services (CMS), the average cost of a double-lung transplant was more than $1 million in 2017.¹ Although transplant costs are often covered at least partly by health insurance, transplant recipients have to pay for some transplant-related expenses themselves (called out-of-pocket expenses).

Some costs, such as the costs of moving to a residence that is closer to the transplant center and living expenses, won't be covered by insurance. People undergoing a transplant evaluation need to show that their health insurance will cover transplant and that they have a plan in place for covering the out-of-pocket expenses and post-transplant care. These expenses may include co-pays for lab tests, medications, and physical rehabilitation, and relocation expenses (if necessary). 

If you are considering purchasing or changing health insurance, this health insurance comparison tool can help you determine which plan is the best one for you. If you may consider a lung transplant in the future, it is important to understand if any health insurance coverage you have covers transplant.

Logistically
Donated lungs cannot last for more than a few hours without blood flow and oxygen. In addition, you will need to attend many appointments with your transplant team before and after surgery. Therefore, many transplant centers will require that you live within a certain driving distance or arrange to have yourself flown to the transplant center quickly.

• Your health insurance policy may offer transportation and housing benefits to help defray the costs of getting a transplant at a center that is far from your home.
• Check with the transplant centers you're considering to find out if they offer affordable housing nearby to support people who must relocate to live near the center.

If you are added to the United Network for Organ Sharing (UNOS) transplant waiting list, from the moment you are listed and for a period after your transplant, you will need to live near your transplant center. You will visit the center often for medical tests, appointments, and rehabilitation. It is important that you learn what services your transplant center offers to help you meet these needs for a successful recovery.

Socially
Social support is vitally important before and after transplant. Most centers have strict requirements about the people who serve as part of your social support team and who can help care for you as a transplant recipient. 

Many transplant centers require that two people commit to actively supporting the person with CF, and some centers require that caregivers commit to learning as much about transplant as the potential recipient before transplant. Some centers require that caregivers cannot have other obligations that would prevent them from providing care and support to the transplant recipient, including children or parents to care for. In addition, many centers do not permit hiring a professional caregiver or home care aid. For example, one center requires that your caregiver must be able to drive, be a nonsmoker, and may not be responsible for anybody else's care, such as children or parents.

 

 

 

 

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The resources below can help you understand the transplant process and financing a transplant.

Transplant Process

• UNOS: What Every Patient Needs to Know — this downloadable PDF explains the transplant process
• UNOS Transplant Living: People You Should Know — explains the people on the transplant team and the roles they play
• UNOS Transplant Living: How Organs Are Matched (including how lungs are allocated) — explains how donor organs are matched with recipients

Financing Transplant

• UNOS Transplant Living: Frequently Asked Questions — provides examples of financial questions to ask your transplant financial coordinator, insurance provider, and potential fundraising organization
• Children's Organ Transplant Association: Transplant Expense Estimator — provides a tool to estimate transplant expenses
• UNOS Transplant Living: Financial Resources Directory — lists organizations that provide financial assistance as well as organizations that provide education or advocacy services.
• Social Security: Benefits for People with Disabilities — provides information about the Social Security and Supplemental Security Income disability programs
• Medicaid.gov: State Medicaid and CHIP Profiles — provides a search tool to view each state's Medicaid and Children's Health Insurance Program (CHIP) programs

Transplant Centers

• Learn about transplant centers across the country, including the one you may be referred to by your CF care team.

Legal Information

CF Legal Information Hotline — information about your legal rights

Cystic Fibrosis Foundation Compass is a personalized service that can help you understand insurance coverage and costs and find financial resources. You can contact Compass at any point to learn more about financial assistance programs to help you afford a transplant. You can contact Compass at:

844-COMPASS (844-266-7277) 
Monday - Friday, 9 a.m. - 7 p.m. ET 
compass@cff.org

1. https://medicare.com/coverage/does-medicare-cover-a-lung-transplant/