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
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)
·
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):
·
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)
