Lung transplantation is a possible option for people with
advanced lung disease due to CF. However, it is important to know that
transplantation is not a cure. People with CF who undergo lung transplantation
have an estimated 70% to 80% chance of one-year survival and a 48% chance of
five-year survival. Because there is no guarantee of success, it's best to work
with your healthcare team to prevent and slow the deterioration of your lung
function.
There are five lung transplant centres in Canada, which are located in
Vancouver, Edmonton, Winnipeg, Toronto and Montreal. However, there is a
shortage of donor lungs, so the wait for lungs is approximately 18 to 24 months
after being placed on the candidate list. For many people on the list, survival
until transplant is a key issue. Therefore, even though it might seem premature
to start discussing lung transplantation, your healthcare team might advise you
to start the process early enough to allow for the waiting time.
What is a Lung Transplant Centre?
A lung transplant centre is a hospital that delivers care through a
multidisciplinary team of health care professionals who specialize in different
areas similar to the CF clinic. The Canadian Cystic Fibrosis Foundation provides
funding to CF lung transplant centres through the "Transplant Centre
IncentiveGrant."
Who is a candidate for a referral to a Lung Transplant Centre?
Candidacy for referral to a lung transplant program varies among the centres
in Canada. The following are guidelines used by the Lung Transplant Centre in
Ontario. Although it varies with each centre, patients meeting the following
criteria may be considered for lung transplant:
less success with medical therapy
FEV1 < 30% (or sooner)
â O2 , áCO2 in the blood
a frequency of infections/hospitalizations
life expectancy < 24 months (without a transplant)
Why might I not be able to get a transplant?
Each transplant centre has developed certain criteria based on research and
experience for not accepting patients for transplantation. Once again, these
criteria vary from centre to centre.
Medical limitations include:
serious heart, liver of kidney failure
severe diabetes with damage to the eyes, heart or kidneys
a history of cancer within the previous two to five years, or evidence of precancerous cells found during physical assessment
poor nutritional status
active infection in other areas of the body (i.e.. HIV infection or chronic hepatitis B or hepatitis C infection) or an active lung infection with Mycobacterium tuberculosis
severe osteoporosis (bone thinning) with fractures or near fractures
other serious diseases that compromise long-term survival
Psychosocial limitations include:
current or recent abuse of alcohol, tobacco, or other drugs
psychiatric illness severe enough that you cannot comply with pretransplant and post transplant treatment plans
general inability to comply with complex treatment plans
a lack of adequate social support systems
Who decides if I get put on the waiting list? And how?
The transplant team will determine whether you are a candidate for a transplant
after an extensive assessment. The transplant team usually includes the
transplant physician, the transplant coordinator, social worker, psychiatrist,
physiotherapist and dietitian and may include others. The assessment may be done
as an inpatient or outpatient (depending on the centre) but will likely include
the following:
An assessment by individuals on the transplant team is done in order to
determine whether you are physically and emotionally ready to make the decision
to have a transplant and whether you will have a good chance of surviving the
surgery. This assessment will include considering whether you have enough
emotional, medical, and financial support.
A variety of tests will be performed with your consent. They include an echocardiogram, pulmonary function tests, blood tests, sputum cultures, and sinus and chest x-rays and/or computerized tomography (CT) plus more.
What other things do I need to know?
You will still have pancreatic insufficiency because of your CF so you will continue to need enzyme, vitamin, and mineral supplements. Enzyme supplements will also help with absorbing some antirejection medications.
Many of the medications that are needed for preventing organ rejection have side effects.
Prednisone prevents organ rejection, but may cause diabetes or osteoporosis (thinning of the bones). Diabetes --whether you had it before your transplantation or developed it later-- will have to be monitored more frequently. Osteoporosis may require treatment.
Your body may reject the new lungs. You will need daily medication to prevent rejection.
The suppression of your immune system will make you more susceptible to infections. You will have to take added precautions and medications to prevent and treat infections.
Transplants are costly, both financially and emotionally, for patients and their families. Maintaining one's health after lung transplantation continues to be rigorous and complex.
Transplanted lungs are susceptible to infection, rejection, and other complications that require treatment.
How are lungs transplanted?
The most commonly used method of lung transplantation in CF is bilateral
(both sides) lung transplantation. Since both of your lungs are damaged, both
are removed. This also eliminates the possibility that the bacteria in the
remaining lung could infect a new lung.
Donors are selected according to pre-established guidelines. Healthy donor
lungs should have had sufficient oxygen before their removal from the donor and
should be free of infection and damage. The donor must match your blood type and
body size. The limited number of available donor lungs and the importance of
matching donors to recipients contribute to the long wait that many candidates
face. Donor lungs are currently offered to the person highest on the list, with
the best match, in the region closest to the donors. Sicker patients are not
necessarily given priority.
Because there is a shortage of donor lungs, alternatives have been considered
and tried. These alternatives, performed at a limited number of transplant
centres, include transplanting one lung and removing the other one or
transplanting lung lobes from two living donors. In the future, transplanting
nonhuman lungs may be feasible.
What are some of the benefits of lung transplantation?
Despite the difficulties of transplantation, there are many rewards. Your new
lungs will not develop the CF defect and do not have the infections and damage
your natural lungs had. As you recover from your surgery, you will find that you
have more energy, gain weight more easily, and can be much more active and
independent than before your transplant. The outcome of lung transplantation
surgery cannot be guaranteed but, if all goes well, you can live a happy,
productive, and fulfilling life.
If you need more questions answered, speak to anyone on your CF team or refer
to the resources listed.
Sources of Information
Your CF center staff and the transplant center in your area will have more
information that they can give you. Many transplant centers have support groups
for people who are preparing for transplantation. You will be able to meet or
talk to people who have had this experience so that you can ask questions that
will help you make your decisions.
Resources and Educational Materials
Lung Transplant for Cystic Fibrosis. An educational tool for patients based
on the experience of the lung transplant program at the University Health
Network, Toronto General Hospital, Toronto, Ontario, Canada.
Visit the Canadian Cystic Fibrosis Foundation website at www.ccff.ca(search: transplant)
Second Wind Lung Transplant Association, Inc. This organization offers
information and emotional support to people who have had lung transplants. The
mailing address is 1930 Westlake View Court, Crystal River, FL 34428-1 e-mail:
secondwind@xtalwind.net
Reference
Some of this information is adapted from an article by Guillermo doPico, MD,
FCCP, Professor of Medicine, CF Adult Program Director, University of Wisconsin,
Madison, Wisconsin (in Genentech's CF Toolbox)
