Everything You Always Wanted to Know But Was Afraid To Ask About Lung Transplant

 

At What Point Will I Need a Lung Transplant?

 

This question has most likely crossed the minds of most individuals with Advanced lung disease caused by Cystic Fibrosis (CF). 

 

The Initial Conversation

 

Whether initiated by you or your CF care team, it is essential that you have an open and honest discussion with your CF care team about your desires and what you can expect throughout the lung transplantation process. Having this candid conversation will help you to start thinking about the benefits and risks of having a double lung transplant. 

 

Your doctor may suggest that you may be a candidate for a double lung transplant if your CF lung disease is not responding well to other therapies.  The criteria for a referral to the transplant team may include if a patient’s FEV1 falls below 30%, and if a patient experiences a clinical decline with increasing frequency of exacerbations and/or hospitalizations. Additional factors may include non-invasive ventilation, worsening nutritional status, pneumothorax and hemoptysis. At Stanford Hospital, doctors perform lung transplants on patients from 12-70 years old.  Doctors often refer to what is called the “transplant window”.  You must be sick enough to need a transplant but well enough to survive the surgery and recovery process.  If having a transplant is not your preference, doctors will never mandate that you go through the program. You are always in control of deciding whether to be evaluated for a transplant. Instead, some people decide that they want to live the rest of their lives on their own terms. There is nothing wrong with choosing that path.

 

If the decision is to go ahead and be evaluated for a transplant, it must be understood that additional factors go into the evaluation process and that you are not guaranteed acceptance into the program.   The criteria for the patient that must be met include results from a series of medical tests, a psychological evaluation, confirmation that a social support system exists, and financial means can be a factor.  Due to the extreme shortage of organ donors, these factors are combined to create an allocation score that reflects a patient’s need and probability for a positive outcome and recovery. 

 

Life Expectancy for a Double Lung Transplant Patient

 

Research into how to extend the lifespan of a post-transplant patient is a very high priority for many doctors and researchers in the field of transplant.   For individuals with CF, more than 80% of lung recipients are still alive after one year, and more than 50 percent are still alive after nine years. (CFF.org)  Areas of study include: improvements in surgical techniques, immunosuppressive medications, post-transplant care procedures and the methods to preserve donor organs until they can be transplanted.

 

 

 

What to expect during the evaluation process?

 

There are two types of lung transplant.  One is a single lung transplant and the other is a bilateral lung transplant. Individuals with CF always require a bilateral transplant.  This is because the chronic infections present in CF lungs will pass from the disease infected lung that would remain, and thus infect the newly transplanted lung causing the possibility of infection and worse yet, rejection.

 

Preparing for your transplant: a personal prespective

 

The waiting time for an acceptable donor set of lungs can vary from 24 hours to several years.  What I personally was told to do during this period of time was to get in the best shape possible and gain as much weight as I could.  This seemed to be a huge contradiction to what one is feeling able to do at this point in time when health is precariously variable and quality of life is rapidly diminishing.  I literally went into “training mode” preparing for when I would receive “The Call”.    This proved to be incredibly beneficial.  One of the key medications used for immunotherapy post-transplant is Prednisone.  This medications at high doses causes terrible muscle fatigue and wasting.   Additionally, for 3 months post-transplant, sternal precautions are in place and you cannot use your arms to lift yourself from bed, sitting position, bathroom duties etc.  Strong quadriceps are very important.  I immediately noticed mine declining while in the hospital and on high dose steroids.  Having physically prepared for this surgery, I was able to stand up in the ICU within 24 hours post-transplant. 

 

Post-transplant recovery can vary significantly among individuals.  The time in the ICU, mid ICU and ultimate length of stay in the hospital is extremely variable. The doctors try to discharge patients as soon as they are physically able in order to avoid a hospital acquired infection.  Complications from surgery can occur as with any surgical procedure.    A positive strategy for me was to focus on what I could control and remain as optimistic as possible.  Getting up and walking around the hospital to begin pulmonary rehabilitation is highly encouraged as soon as the patient is able.  Once again, this varies from patient to patient.

 

Transitioning from the “CF Patient” world to the “Post-Transplant world” comes with a learning curve that becomes second nature overtime.  This includes an entirely new set of medications, lifestyle changes and precautions. With the gift of breath, these items might pose some challenges but are not big obstacles to incorporate into your new life.   

 

It is highly encouraged to begin a pulmonary rehabilitation program post-transplant when a patient feels ready.  As with CF lungs before transplant, exercising post-transplant is just as important.  This effort will hopefully reflect in improved pulmonary functions tests (PFTs).  Yes, PFTs are just as critical for pulmonary health status post-transplant.  Post-transplant, PFTs can be the first indication if rejection or infection are present in the new lungs.  Bronchoscopies are performed as a tool to determine if an infection or type of rejection might be present. 

 

It is important to remember that with transplant a patient is not cured of their CF.  The diabetes and GI complications are still present.  Ongoing sinus issues remain a concern, the infections in the sinuses can pose a risk for lung infections and a further risk for rejection.   On a more positive note, the pulmonary issues which consumed the most time, effort and energy are hopefully vastly improved. The goal being no more need for oxygen and no more ongoing requirement for aerosolized medications to breathe.  Of course, there might be bumps along the road that might require a temporary need for those familiar medications but hopefully not an everyday necessity. 

 

Most CF patients will experience a vastly improved quality of life post-transplant where activities that might have been a thing of the past are now considerably easier to do.  There will always exist a close partnership between the patient and the transplant team.  This is just a given within the transplant world as was the case pre transplant. 

 

Financial aspects of How to Pay for Your Transplant

 

The following information was provided by Suzanne Tegio, Transplant Financial Coordinator with Stanford Health Care Adult Solid Organ Transplant & MCS Program, to assist patients with the financial concerns when considering a transplant.

 

If patients present with no insurance, Stanford Transplant Financial coordinators will explore with the patient the following:

·         If they have an option to enroll in coverage via a spouse/domestic partner employer group plan

·         Medi-Cal

·         Covered CA

·          

Typically, the Covered CA website will screen for both Medi-Cal and Covered CA eligibility

·         https://dhcs.ca.gov/services/medi-cal/Pages/ApplyforMedi-Cal.aspx

·         https://www.coveredca.com/

 

For patients that are considered underfunded i.e. Medicare only coverage with no supplement:

·         We will refer them to Medi-Cal – same link above

·         HICAP (Health Insurance Counseling and Advocacy Program)

·         https://www.hicap.org/

·         Insurance broker of their choosing for possible Medigap/Supplement plans

·         Unless patient can agree to all financial liabilities with Medicare alone, they are not considered under funded

 

Fundraising is always encouraged (these are not endorsements):

·         https://patients.transplants.org/

·          

 

 

 

 

 

A personal perspective from Bonnie Grossman, (bilateral lung transplant August 2015, UCLA)

 

Every hospital has different insurance requirements that cover Transplant surgery.  If your hospital accepts Medicare, you will also need to be sure that you have a good prescription plan.  Try to have a back-up private insurance that will cover your medicines.  Medicines post-transplant can be costly, so this is an important detail to cover. 

 

 

Residential requirements while living away from home for transplant pre and post.:

 

For Pre-transplant, it is necessary to be within a 4-hour drive to get to the hospital once one gets the call that they have a donor organ/match for you.  It is helpful to have a packing list for post-transplant needs and comforts for both you and your caregiver. Since you will be living away from home for 12 weeks +, pack with getting well in mind but still in recovery. A list might include: small white board and pens for right after you awake but still intubated, exercise clothes and sports shoe, flip flops/slippers, comfortable (not tight clothing),  masks, Purell bottles, favorite pillows, as well as, a wedge pillow that you will need to sleep elevated for a period of time to minimize reflux issues getting into the new lungs, computer or other electronic devices, anything to do with managing household finances, Meds for spouse and likewise clothes and comforts for them. Depending upon where you live post-transplant you may want to bring other household items.

 

In terms of housing options there are many internet sites: Airbnb, VRBO, Craig’s list, or using a realtor to find a short-term rental from the MLS., or a family member.  It is important to think about being in a residential environment where you will not be exposed to small children or crowds of people who may not be aware of your immune compromised situation. Also, there may be a hospital sponsored facility that you will want to get more information about from your social worker. It is best to find a place within a 30 minutes’ drive as you will have many appointments post-transplant with your medical team and with pulmonary rehabilitation.

 

What is most difficult about looking for post-transplant housing is that you cannot plan ahead for timing on when to start housing and for how long you will need the housing because everybody’s situation and outcome is different.  So, it is important to not stress about it and let your caregiver take care of this while you are recovering.  This can be something they do while you are being cared for while in the hospital.  Look for temporary accommodations that are easily accessed without stairs or physical barriers is preferred . A place with fresh air and good ventilation is a nice feature as well.

 

 

While the journey to transplant may feel incredibly daunting, the best suggestion is to take it a day at a time.  There will be numerous doctor appointments, a battery of diagnostic tests and exams, and the inevitable waiting period.  In the end, the hope of both Physicians and individuals, is an improved quality of life and longer lifespan.  With this incredible Gift of Life, a whole new life begins!

 

 

Elyse Elconin Goldberg (Bilateral Lung Transplant September 2013)