Edited by Dr. Mark Rolfe, M.D., head of Tampa General Hospital’s Lung Transplant Program
Is lung transplantation always a last resort or are there alternative treatments that can be explored prior to that?
Various less invasive treatments are always initiated before a transplant may be indicated. A transplant is recommended when the condition of the patient’s lungs is irreversibly damaged and limits life expectancy and/or quality.
If I am told I need to get on the lung transplant list, should I seek the second opinion of another physician before I proceed?
This would be up to the patient. It’s always a good idea to have another practitioner examine a patient’s records and the patient themselves. Remember, though, that if you are seen in the transplant center your own physician has referred you (first opinion) and before you even come in a transplant pulmonologist has reviewed your records (second opinion) and determined that you are possibly a candidate for transplant. Insurance companies will often pay for a second opinion.
If a doctor has recommended that I get a lung transplant, does that mean he already knows I can physically withstand such an operation?
Not always. A patient must undergo a regimen of tests to be sure he or she is sufficiently strong to handle not only the operation but the various procedures that come before and after as well as the medications that are necessary in this treatment. It’s also important to determine if the patient will be 100 percent compliant with all that is expected in order to make the entire process a success.
Are there ways that people who are uninsured or whose insurance is basic and doesn’t cover transplantation can obtain financial assistance to cover the cost of the lung transplant procedure?
There are organizations that assist patients in obtaining funds in a number of ways. However, lung transplantation can be costly and anti-rejection medications are expensive as well. If the patient is determined, a combination of financial strategies may result in sufficient funds being raised for the procedure.
If I’ve been placed on the waiting list for a lung, is there an average wait time for one to become available?
The time you’re on the list depends on how many others are waiting for a lung in the same compatibility range. You can wait a few days up to many months. Your case will be closely evaluated to establish a priority ranking and every effort is made to find a compatible lung in the shortest amount of time.
In the event I am informed that a lung is available and I am summoned to the hospital yet I may be ill with a cold, flu or other illness, could this affect my ability to receive the available lung at that time?
You may not undergo a transplant procedure if you are ill. Ultimately the decision will be made by your transplant team. However, it is necessary that you be in a healthy state for this operation. Once you are on the waiting list you should inform your transplant center of any changes in your condition.
If I have received other significant treatments for my pulmonary illness prior to having a transplant, will having those treatments in any way interfere with my ability to have a successful transplant?
Not at all, unless a treatment caused a complication that your doctor will evaluate. Once you are accepted into the transplant program, the results of tests will determine with certainty your ability to have a lung transplant.
Have there ever been cases where transplantation patients have successfully received a lung from another transplantation patient who passed away from unrelated causes and their transplanted lung was healthy?
It is not likely that a lung which had already been transplanted would be used a second time. However, this would be a decision that your medical team would make.
Will my new lung function just like my old one did when it was healthy or will breathing feel differently?
Once stabilized, your breathing should be better than ever. You will not be aware of anything except appreciating every great breath you take.
Can I expect any other behavioral or lifestyle changes as a result of receiving a new lung?
Other than following doctor’s orders regarding activities in the months following your operation and getting used to your medication regimen, you should be able to resume a normal functioning life. There may be very strenuous activities you will have to avoid but your doctor will discuss this with you.
Following my transplantation operation, can I expect to eventually feel and function like my old self with no physical limitations?
As stated above, gradual rehabilitation should get most people to a level of activity they were used to before they developed lung disease. Of course there are boundaries of activities you may participate in and your doctor will discuss these with you. It’s important that you ask questions of your doctor at that time.
Is there an average time working with my doctor that anti-rejection medications and their doses can be properly adjusted so I can get on a predictable regimen? Should I expect those medications to change my energy levels or the way I feel in any way?
Very close attention is paid to adjusting medications to achieve proper levels for comfort. It can sometimes take several months to adjust and modify your regimen to allow you the benefits of appropriate immunosuppression with the smallest risk of side effects. Once you have healed and gone through prescribed rehabilitation activities your energy levels should be perfectly normal.
I know that I’ll have to take it easy for a period of time after my transplantation operation but will there be a time later when I still have to be vigilant about what I eat, vitamins that I take, unrelated medications, etc.?
Appropriate members of the transplant team will assist you with diet, vitamins if necessary and work with your other doctors to be sure no medications you are prescribed will affect the action of the anti-rejection drugs you may be taking. All changes in your medications or additions to your medications should be cleared by a member of your transplant team. It is important at this time that you ensure your weight is proper and stable and that meals you consume are nutritious.
If I have a transplanted lung and I need unrelated surgery such as a hernia repair or something more serious like an artery bypass, would there be any complications to that? Would my new lung stand up to the anesthesia procedure? Will there be special measures taken?
Your surgeon will work closely with the transplant team to ensure your treatment is successful. In most cases, there should be no problem or complications from any surgery that may require special measures after transplantation.
Once I have my transplantation operation, will it be difficult for me to get health insurance if I am dropped by my current insurer for some reason?
Getting health insurance is difficult for anyone who has serious medical problems. Insurers who might consider insuring you will more than likely not insure any illness or surgery related to any organ related to the transplant. You are highly encouraged to keep your current insurance in force because it may be the best policy you will ever have. Our social workers and finance/ insurance experts will be available to make the best decisions.
Has there ever been a case where a transplanted lung developed cancer or other serious medical problems that need to be treated or even required a second transplant?
In medicine, anything can happen. However, detailed measures are taken to ensure a patient receives a very healthy lung and the patient must be compliant in making lifestyle changes that do not encourage medical problems related to the lung. In certain situations, particularly in complications regarding rejection issues, a second transplant can take place.
Are flu, congestion or other such ailments that can affect the lungs common in transplant patients?
No, but only because patients are given strict instructions on situations to avoid and measures to take to stave off disease and infections. Of course, if a patient is non-compliant and associates with people with flu or respiratory problems then this can occur. It is not common.
Should transplant patients avoid high altitudes where the air may be thinner?
Flying and vacations in mountain regions are not uncommon among lung transplant recipients. However, protracted periods outside in cold, thin air and involvement in activities outside in those areas should be discussed with your doctor in advance of plans.
I am prone to panic attacks and hyperventilation. Can these situations adversely affect or aggravate my new lung?
No. Your new lung will behave as any other lung. However, if you are prone to panic attacks and hyperventilation, you would have already discussed this with the transplant team and been given instructions on how to minimize these episodes.
After my transplant, should I avoid buildings with asbestos, areas where there’s a lot of dust, outdoors when the air is heavy with smoke, etc.?
It’s good for lung health for anybody to avoid areas of asbestos, dust, heavy smoke, etc. Certainly, you should not have employment that requires you to be around such conditions for protracted periods of time. If you must be in such conditions, you are advised to wear appropriate coverings to avoid excessive inhalation of this type of material. If the air gets particularly smoky in your area, it’s best to remain indoors until it clears.
Will it be necessary to wear a bracelet or carry some other kind of notice that I am a lung transplant patient in case of a medical emergency where I am incapacitated?
It’s always a good idea to wear a Medic Alert or other bracelet if you have a medical condition that might require special attention in an emergency. In the case of a lung transplant recipient, it will not only let emergency personnel and doctors know a new lung is involved but that the person will be on important medications that must be administered in a timely fashion.
If humans have two lungs, how is it that they can function very well with one good lung? Is it ever necessary for a person to undergo double lung transplantation when only one may be sufficient?
A human can function fine with just one lung although two are sometimes transplanted. The decision on how to go about this is made by the transplant team. The transplant of only one lung is usually performed in situations where “native” lung will not affect the transplanted lung if it is left in place. Age and how urgently a patient needs a lung transplant are also factors which are examined by the transplant team before deciding on a single versus double lung transplant
Both of my lungs are diseased, yet I’m only going to have a single lung transplanted. Is it important for the other diseased lung to be removed or will there be a point where it could be so diseased removal would be necessary?
In many cases, the remaining lung is left in the chest cavity if there’s no danger of disease spreading to other areas. In the case of diseases which could affect adjoining organs, the remaining diseased lung is removed.
I am an organ donor and have a card whereupon in case of my death, appropriate organs will be available to those who have a certified need. Is it possible for me, as a healthy person, to donate a lung to someone while I am alive and just live with one good lung? If I know of someone personally who needs a lung but our lungs may not be medically compatible, can I donate a lung to someone else to get them higher on the list for a transplant?
This is done in rare cases but not as a rule. There are very strict laws and medical protocol associated with the donation and transplant of organs and those must be followed carefully. There are always exceptions that can be made in extreme cases but those are decided by a team of medical specialists.
Can a newly transplanted lung affect the normal operation of other organs, such as the heart?
Not as a rule. Once the transplanted lung has stabilized and the patient has been compliant with treatment in every way, the body should function normally.
If I see my doctor regularly and am compliant with taking all prescribed medications, exercise, watch what I eat, etc., can I expect a normal life expectancy?
Every case is different and your doctor will discuss this with you. Depending on your age at the time of transplant you may or may not be able to anticipate a normal life expectancy. The transplant team strives to provide you with a much longer life expectancy than you would have had without the transplant and an improved quality of life as well.
Will there ever be a time after a lung transplant when anti-rejection drugs may not be necessary or are will medication be a life-long necessity?
Miracles do happen but so far all transplant patients must receive these drugs in adjusted doses for the remainder of their lives. Type of drugs and dosages are reviewed carefully during visits to the clinic for evaluation.
I am 55 years old. If I receive a lung from a person who is 30 or so, does that mean I have the potential to live much longer, provided the rest of my body is healthy?
You will live longer than you would have without the transplant but the clock doesn’t go backwards and give you “extra time” based on your donor organ.
If I have serious financial setbacks a few years after my surgery, is there someplace I can receive assistance in paying for my anti-rejection medications?
The transplant consultants, particularly the social worker, may help you in that regard. Some drug companies may cooperate in assisting and there may be additional help available from local and state government agencies. The transplant team will do everything possible to assist if such a situation develops.
If I had hay fever or other allergies that affected my lungs prior to transplantation, will those allergies affect my transplanted lung in the same way?
Normally, allergies are incited through the blood and certain ones target specific organs, regardless of how long they’ve been there. Transplantation is certainly not a cure for serious allergy problems. The immunosuppression medication may in some cases suppress your allergic reactions, but these reactions do not usually affect the transplanted organ. The transplant team will help you deal with this problem as much as possible so your new lung isn’t stressed.
If a donor is found for me, how much time will there be for the lung to be harvested, brought to Tampa General Hospital and transplanted to me?
The amount of time may vary but it’s important for this entire procedure to take place as quickly as possible. Once a new lung is found, the doctor will harvest it while you are on your way to the hospital and being prepared for surgery. Time is critical which is why you should always carry your pager with you and have an overnight bag prepared and ready to go to the hospital.