FAQ

Edited by Dr. Kapil Patel, Medical Director for the TGH/USF Center for Advanced Lund Disease & Lung Transplantation

Is lung transplantation always a last resort or are there alternative treatments that can be explored prior to that?

Lung transplant is an option “of last resort”. A transplant is recommended when the condition of the patient’s lungs is irreversibly damaged, and your quality of life and/or life expectancy is limited.

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 is up to you. Remember, though, that if you are seen in the transplant center your own physician has referred you (first opinion) and before your consult a transplant pulmonologist has already 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 my pulmonologist 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 ensure he or she is sufficiently strong enough to handle not only the operation but the various procedures that come before and after transplant. It is also important to determine if the patient will be 100 percent compliant with all that is expected 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. However, lung transplantation can be costly and anti-rejection medications are expensive as well. If the patient is resourceful, 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 time I should expect to wait?

It is impossible to predict how long your wait time will be. The time you are on the list depends on how many others are waiting for a lung in the same height and blood type as you are. Your wait time can range from a few days to a few years depending on your LAS and your disease. Every effort is made to find compatible lungs in the shortest amount of time.

In the event I am informed that a lung is available, and I am summoned to the hospital- I may be ill with a cold, flu or other illness. Could this affect my ability to receive the available lungs 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?

Sometimes, things that treat your lung disease can interfere with your ability to have a transplant. The evaluation process and results of tests will determine with certainty your ability to have a lung transplant.

Have there ever been cases where transplant 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 may require some oxygen for a short period of time after transplant.

Can I expect any other behavioral or lifestyle changes because of receiving a new lung?

You may experience some side effects from the anti-rejection medication, but we will make adjustments as needed to minimize these. There will be some restrictions in activities in the months following your operation, but you should be able to resume a normal functioning life after the first few months.

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 in activities you may participate in and your transplant team will discuss these with you.

Is there an average time 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?

Your anti-rejection medication levels are very closely monitored, especially the first few months after transplant. Once you have recovered and gone through prescribed rehabilitation activities your energy levels should normalize.

I know that I’ll have to take it easy for a period of time after my transplant, but will there be a time later when I don’t have to be so vigilant about what I eat, vitamins that I take, unrelated medications, etc.?

You will be immunosuppressed for the rest of your life and will have to continue to take certain precautions. Your transplant team will assist you with any questions regarding diet, medications, and activities that may interfere with your transplant. All changes in your medications or additions to your medications should be cleared by a member of your transplant team.

If I have a transplanted lung and I need unrelated surgery such as a hernia repair or something more serious like a coronary artery bypass, would there be any complications with that? Will there be special measures taken?

If I have a transplanted lung and I need unrelated surgery such as a hernia repair or something more serious like a coronary artery bypass, would there be any complications with that? Will there be special measures taken?

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. You should never change your insurance without notifying your transplant team because your new insurance may not cover necessary medications and procedures related to your transplant. You are highly encouraged to keep your current insurance because it may be the best policy you will ever have. Our social workers and financial coordinators will be available to assist you.

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. Your immune system is suppressed so it is at a higher risk of developing cancer, infections, and other medical problems. However, detailed measures are taken to ensure a patient receives a very healthy lung. You must be very 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 viruses and respiratory infections more common in transplant patients?

No, it is not more common but the consequences of them can be greater. Transplant patients are educated on measures to take to decrease their risk of exposure.

Should transplant patients avoid high altitudes where the air may be thinner?

They do not need to avoid high altitudes, but certain precautions need to be taken. You should always talk with your transplant team prior to traveling. Special masks need to be worn when traveling on airplanes.

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.?

Areas of asbestos, dust, heavy smoke, etc can be damaging even to individuals without a lung transplant. Transplant patients should always avoid these exposures to the best of their ability. If you must be in such conditions, you are advised to wear a mask with appropriate filtration in it to avoid excessive inhalation of this type of material. If the air in your area gets particularly smoky, it is 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?

If you have a medical condition that may require special attention in an emergency, then it is always a good idea to wear a Medic Alert bracelet. After transplant it will let emergency personnel and doctors know you are a lung transplant patient and require 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 sufficiently with just one lung although two are sometimes preferred. The testing you complete during your evaluation will help your transplant team determine if you can receive a single or double lung transplant. Age and how urgently a patient needs a lung transplant are other factors that are taken into consideration.

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 a single lung transplant usually, the lung that is most diseased is removed. Your other native lung will remain in your chest cavity. Blood will flow to the area of least resistance- in your case- the transplanted lung.

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. There are very strict laws and medical protocols associated with the donation and transplantation of organs that 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?

It can but it is not common. Advanced lung disease can cause stress to other organs, especially the heart. Normally after your lungs are transplanted it relieves these other organs of that stress.

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. Many factors contribute to your life expectancy post-transplant. The goal of transplant is to extend your life expectancy and improve your quality of life as well.

Will there ever be a time after a lung transplant when anti-rejection drugs may not be necessary, or will medication be a life-long necessity?

After transplant you will be on immunosuppression medications for the rest of your life. The dosage of these medications may decrease over time.

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?

Our goal of transplant is to extend your life expectancy after transplant and your team takes special consideration when choosing donor lungs for you.

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?

Your transplant team, especially your social worker, will assist you if an issue should arise. Some drug companies offer financial assistance for patients who qualify.

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?

Transplantation is certainly not a cure for serious allergy problems. The immunosuppression medications may in some cases suppress some of 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

If a donor is found for me, how much time will there be for the lung to be procured, brought to Tampa General Hospital and transplanted to me?

Time will vary depending on the donor location and donor OR time. It is important for you and your family to come to the hospital as soon as possible once you are notified an organ is available. The donor coordinator will provide you the necessary information when they contact you. It is helpful to already have a bag packed and ready to go for when you do get the call.

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