General Living Donation FAQs
What do I have to pay for as a Living Donor?
Medical expenses associated with living donor evaluation are covered by either the recipient’s insurance or in certain circumstances, by the Transplant Centers Organ Acquisition Fund (OAF). In either instance, the living donor should not incur any expenses for the evaluation. However, expenses related to another health concern that may be identified during the evaluation process will not be covered by the recipient’s insurance or the OAF. The actual donation surgery expense is covered by the recipient’s insurance. The transplant center will charge a recipient’s insurance an “acquisition fee” when he or she receives a transplant. The medical costs related to the donation procedure are also covered by this fee. (Source: UNOS)
In some instances, the actual itemized bill for the donor procedure is submitted to the recipient’s insurance. Anything that falls outside of the transplant center’s donor evaluation is not covered by insurance. These costs could include annual physicals, travel, lodging, lost wages and other non-medical expenses. Although it is against the law to pay a living donor for the organ, these costs may be covered by the recipient. Be sure to check your specific insurance policy or ask a transplant financial coordinator about concerns related to your specific circumstances. You may also want to learn more about the National Living Donor Assistance Program, which provides financial assistance to those who want to donate an organ.
In some cases, there may be lost wages incurred by the donor if they are unable to work without compensation such as short-term disability or paid time off. If you need assistance covering lost wages or need other financial resources, please see our Financial Resource Guide and learn about our Patient Assistance Program. For laws and regulations regarding donor compensation please see Living Donor Leave Laws – Federal and State by State.
How many paid days off can I get?
All federal employees are eligible to use up to 30 days of paid leave each calendar year to serve as an organ donor. Each state and business varies on what employees are entitled to have as an organ donor. To learn more about the regulations in your state, see Living Donor Leave Laws – Federal and State by State.
If you would like more information about becoming a living donor, please join our Potential Living Donor Database. Note: This is not an official donor registry but rather a way to receive information and guidance through the donation process. If you would like to speak to someone who has donated themselves, please join our free 1+1=LIFE Mentorship Program.
Kidney Transplants and FAQs
The Basics of Kidney Transplants
How does the waiting list work if I can’t find a match on my own?
A person’s spot on the waiting list depends on the patient’s medical urgency, blood, tissue and size match with the donor, time on the waiting list and proximity to the donor. Under certain circumstances, special allowances are made for children. For example, children under age 11 who need kidneys are automatically assigned additional points. Factors such as a patient’s income, celebrity status, and race or ethnic background play no role in determining allocation of organs.
Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word “list” is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor’s blood type, size and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the “list,” is different each time.
The other major guiding principal in organ allocation is: local patients first. The country is divided into 11 geographic regions, each served by a federally-designated organ procurement organization (OPO), which is responsible for coordinating all organ donations. With the exception of perfectly matched kidneys and the most urgent liver patients, first priority goes to patients at transplant hospitals located in the region served by the OPO. Next in priority are patients in areas served by nearby OPOs; and finally, only if no patients in these communities can use the organ, it is offered to patients elsewhere in the U.S.
How long will the transplant surgery be?
The surgery generally takes up to 2-3 hours.
What happens if my body rejects the kidney?
There are different levels of rejection preceding transplant. After kidney transplantation, your body will reject the kidney to some extent because your body sees the new organ as a foreign object that it isn’t used to. It will take some time for the body to fully accept the new kidney. A recipient can function quite well if there is a small amount of rejection in the kidney. However, if the new liver is failing fatally, then a second or even third transplant may occur. Anti rejection medication is also distributed to help the new kidney function.
What are my chances of surviving a kidney transplant?
Depending on how healthy the recipient is and their age, there is a 90 to 95% success rate after kidney transplant. Kidney transplants are also the most successful organ transplant around the world.
Are there any other options besides transplant?
Other than transplantation, dialysis is one of the only other options in place of a kidney transplant. Dialysis is a process that cleanses your blood. There are several different types of dialysis, depending on the patient’s condition. Hemodialysis and peritoneal dialysis have been done since the mid- 1940’s. Dialysis, as a regular treatment, was begun in 1960 and is now a standard treatment all around the world.
What are the risks in kidney transplant surgery?
Risks may include kidney rejection, infection, bleeding, blood clots, heart attack, stroke, damage to other organs, reaction to the anesthesia (which may include problems breathing), and failure of the donor kidney.
How can I take care of my new organ?
Living Donor Kidney Transplants
What is the process for determining if I am a candidate to donate?
The first step is determining whether or not you are the same blood type as the recipient. After that, there are psychological and physical tests administered that are used to determine if a donor is a good match. It is important that you are healthy and can withstand the surgery and recovery and that the specific organ you are donating is a good match for the recipient. Visit srtr.org for a transplant center near you.
How do I begin the donor process?
If you are interested in being a living donor, you should contact the determined hospital to request a questionnaire. Once the questionnaire has been completed, it will be reviewed by a nurse coordinator to determine if you may proceed with initial blood testing.
Once your blood type, antigen match, and cross match are known, the living donor nurse coordinator will discuss the results and the donation process with you and answer any questions so that you can make an informed decision about proceeding with donation. This conversation is strictly confidential and is not shared with the recipient. If the donor decides to continue with the donation, they must then complete a comprehensive evaluation.
Can you donate to someone who is not related to you?
Yes you can, though you will still need to go through the evaluation process. It is a good idea to think about why you want to donate and the effects it may have on your relationship post-transplant.
What are the long-term affects of being a living donor?
All patients experience some pain and discomfort after a surgical procedure, and as with any major operation, there are risks involved. It is possible for kidney donors to develop infections or bleeding, and when a portion of the liver or pancreas is donated, the liver or spleen could be injured.
You will have a scar from the donor operation- the size and location of the scar will depend on the type of operation you have.
Some donors have reported long-term problems with pain, nerve damage, hernia, or intestinal obstruction. There are not currently any national statistics on the frequency of these problems.
In addition, people with one kidney may be at a greater risk of:
- High blood pressure
- Reduced kidney function
At what healthcare facilities is living donation available?
This can change, but generally, you will want to check with the closest teaching hospital. Some hospitals include: University of Colorado Hospital; Porter Hospital, University of California, San Francisco Medical Center; University of Nebraska Medical Center; The Mayo Clinic; University of Southern California University Hospital; and Johns Hopkins Hospital.
Visit srtr.org for a transplant center near you.
Does insurance cover living donation?
It is the recipient’s insurance policy that covers the transplant. Any lost wages or medical treatment post transplant are the responsibility of the donor.
See our Living Donation Cost Calculator
See our List of Financial Resources
What is the donor surgery like?
You will be admitted to the hospital the morning of surgery and you will go through a physical examination, including blood work, chest X-ray, and EKG. If all goes well, you will be okay for surgery, but there are times that the patient has been sent home. If you pass the physical exam, the doctor will administer you IV fluids and answer your remaining questions. You will then be escorted to surgery and the anesthesiologist will sedate you. Once you are fully asleep, you will be given a breathing tube to help you breathe during surgery and a catheter will be placed into your bladder. The surgery then begins.
- Done for left-sided kidney removals, beginning to do right kidney cases (individual basis)
- Recovery is quicker
- Less pain
- Improved cosmetic results
- A higher rate of organ donation
- Decision is based on spiral CT results
- For right-sided removal (individual basis)
- Longer hospitalization (additional day in the hospital)
What is recovery like after transplant? How long before I can return to work?
Recovery depends on the recipient and how they feel after surgery. It will take some time to resume a normal functioning life, but little by little, do whatever you feel up to. The recipient will probably have less energy because it takes time for the body to heal properly. Anti-rejection meds are key in helping your new kidney function correctly, which will ultimately make you feel better.
When you return home, your activities will be limited. You should not lift anything weighing more than 10-20 lbs for the first four weeks. You may also feel tired for the first week or two after the surgery and may need frequent naps. However, donors are encouraged to be active in between their periods of rest. Walking is considered excellent exercise during this time. You may also have some swelling around the incision area and should plan to wear loose, comfortable clothes.
You will likely be able to return to work 2-3 weeks after the surgery, depending on the type of work. Most kidney donors can resume normal activities after 4-6 weeks depending on the physical demands of daily living and work tasks. However, some donors require a longer recovery period if their work requires heavy lifting or other physical demands.
Post-transplant, what does the donor have to do to take care of his/her health?
Donors have check-ups with the transplant center to make sure that they are healing well after surgery. After they have recovered, donors return to the care of their regular physician.
Are there support groups for living donors?
There are many groups that support living donation. It is best to contact local organizations dedicated to donation. You can also speak with the coordinator at your hospital for possible resources.
We have a free mentorship program that connects you to a living donor, transplant recipient, or caregiver depending on your needs. Find a transplant mentor who can help you through this process.
Will giving a kidney affect my lifestyle?
A person can lead an active, normal life with only one kidney. Studies have shown that one kidney is sufficient to keep the body healthy. After recovering from surgery, a donor can work, drive, exercise and participate in sports, though contact sports are not recommended. A donor can continue in all types of occupations, including military duty. Also, being a donor does not impact a person’s ability to have a child.
What happens if I decide to donate, but change my mind halfway through the evaluation process?
A donor is never forced to donate if they don’t want to or if they change their mind. In most cases, the assigned doctor will carry the burden of stopping the process and informing the recipient. For example, they might tell the recipient that the donor is not a good match.
What are the laws about living donation?
Liver Transplants and FAQs
The Basics of Liver Transplants
What causes liver failure?
It could be a number of things such as the following:
- Hepatitis B & C
- Autoimmune Hepatitis
- Alcoholic Cirrhosis
- Primary Biliary Cirrhosis
- Cryptogenic Cirrhosis
- Primary Sclerosing Cholangitis
- Hepatocellular Carcinoma
- Wilson’s Disease
- Primary Hemochromatosis
- Non-Alcoholic Steatohepatitis ( NASH)
- Budd- Chiari Syndrome
- Acute Liver Failure
- Metabolic Disease
How does the waiting list work if I can’t find a match on my own?
A person’s spot on the waiting list depends on the patient’s medical urgency, blood, tissue and size match with the donor, time on the waiting list and proximity to the donor. Under certain circumstances, special allowances are made for children. For example, children under age 11 who need kidneys are automatically assigned additional points. Factors such as a patient’s income, celebrity status, and race or ethnic background play no role in determining the allocation of organs.
Contrary to popular belief, waiting on the list for a transplant is not like taking a number at the deli counter and waiting for your turn to order. In some respects, even the word “list” is misleading; the list is really a giant pool of patients. There is no ranking or patient order until there is a donor, because each donor’s blood type, size, and genetic characteristics are different. Therefore, when a donor is entered into the national computer system, the patients that match that donor, and therefore the “list,” is different each time.
The other major guiding principle in organ allocation is local patients first. The country is divided into 11 geographic regions, each served by a federally-designated organ procurement organization (OPO), which is responsible for coordinating all organ donations. With the exception of perfectly matched kidneys and the most urgent liver patients, first priority goes to patients at transplant hospitals located in the region served by the OPO. Next in priority are patients in areas served by nearby OPOs; and finally, only if no patients in these communities can use the organ, it is offered to patients elsewhere in the U.S.
How long will the transplant surgery be?
It will last up to 8 hours, but it can take up to 6-14 depending on complications.
What happens if my body rejects the liver?
There are different levels of rejection preceding transplant. A recipient can function quite well if there is a small amount of rejection in the liver. However, if the new liver is failing fatally, then a second or even third transplant may occur.
What are my chances of surviving a liver transplant?
It all depends on a number of factors, but generally, 60 -75 percent of adult patients and 80 – 90 percent of children survive and are discharged from the hospital.
What are the risks in Liver transplant surgery?
Before the surgery, risks include acute liver failure and complications, such as internal bleeding, coma, kidney failure, or other complications that would make the patient unsuitable for surgery. Other risks before surgery include intestinal bleeding, severe abdominal fluid, confusion, as well as severe infections.
Risks associated with the surgery are the same risks common to any other major surgeries. These include technical difficulties in removing the diseased liver, difficulties implanting the donor’s liver, and complications with the patient being without a liver for a brief amount of time. However, doctors monitor the patients very closely and do everything in their power to keep the patient safe and perform all preventative methods to keep these complications from occurring: http://www.cpmc.org/learning/documents/pfaq-liver.html.
How can I take care of my new liver?
Living Donor Liver Transplants
What is the process for determining if I am a candidate to donate?
The first step is determining whether or not you are the same blood type as the recipient. The blood work is the only test that you may need to pay for out of pocket, though your insurance or transplant center may cover it.
After the blood work, there are psychological and physical tests administered that are used to determine if a donor is a good match (the recipient’s insurance will pay for all additional tests and for the surgery). It is important that you are healthy and can withstand the surgery and recovery and that the specific organ you are donating is a good match for the recipient. Extremely overweight individuals or those with high blood pressure, diabetes, fibromyalgia, heart disease or cancer are not eligible to donate. Visit srtr.org to find a transplant center near you.
How do I begin the living donor evaluation process?
If you are interested in being a living donor, you should contact the transplant hospital where the patient is listed to request a questionnaire. Once the questionnaire has been completed, it will be reviewed by a nurse coordinator to determine if you may proceed with initial blood testing.
Once your blood type is known, the living donor nurse coordinator will discuss the results and the donation process with you. The nurse coordinator will answer any questions you may have so that you can make an informed decision about proceeding with donation. This conversation is strictly confidential and is not shared with the recipient. If you decide to continue with the donation, you must then complete a comprehensive evaluation. Visit srtr.org to find a transplant center near you.
What are the requirements to be a living donor?
The donor must be between 18 and 60 years of age, in good physical and psychiatric health, a non-smoker for at least 6 weeks prior to surgery, and fully able to understand the risks and medical procedures involved in liver transplantation. Additionally, you must be a family member or close personal friend of the recipient.
At what healthcare facilities is living liver donation available?
To find a transplant center in your state, please click HERE.
Can I donate to someone who is not related to me?
In the case of a liver transplant, it is unlikely. A liver transplant is a risky surgery, and many transplant centers will not allow altruistic donations. Generally, a liver donor must be a family member or close friend of the recipient.
Can I talk to other living donors?
Yes, the American Transplant Foundation can match you with a certified transplant mentor. Mentors are not affiliated with any transplant center and are there to help you navigate this process and provide answers you need. There is no cost to you for this service.
Find a Living Donor Mentor
Does insurance cover living donation?
From Yale-New Haven Transplantation Center: you should not incur any expenses related to the evaluation, surgery, hospitalization or immediate post-operative care. The majority of insurance carriers will approve a Living Donor Evaluation once the recipient has been accepted as a candidate for liver transplantation. Since most recipient insurance carriers will cover the donor’s medical expenses only for a short period of time, we strongly encourage you to have your own medical insurance coverage before becoming a living donor. You may, however, incur some expenses for travel and for pain medication after the surgery. If you receive any medical bills related to the evaluation, surgery, hospitalization or immediate follow-up, you should forward them to the Living Donor Coordinator.
In addition, assistance programs such as the American Transplant Foundation’s Patient Assistance Program can provide some financial assistance to donors and recipients.
See our Living Donor Cost Calculator
As a living donor, will I be at a significantly greater risk of developing a liver disease?
No. Based on OPTN data from 1998 through 2007, of the 3,086 individuals who were living liver donors, at least four have been listed for a liver transplant due to complications related to the donation surgery.
What are the long-term effects of being a living liver donor?
The risk of death from the surgery is extremely low. Possible complications for living liver donor surgery are very similar to possible complications from any general surgery. These include blood clots in the legs or lung, fluid retention (edema), bile leakage or bile duct complications, and hernia. You will have a scar from the donor operation on your abdomen, which will fade over time but will always be visible, and the area around the scar will likely feel numb. Donors are expected to return to normal activities within three months post-surgery, provided there are no complications.
From Yale-New Haven Transplantation Center: we do not expect you to have long-term complications, but as this procedure is still relatively new, we cannot yet give you any statistics on the long-term follow-up of donors who have undergone this surgery.
What if I cannot afford to take time off following the surgery?
The American Transplant Foundation provides financial assistance to living donors in financial need (income restrictions apply). They will cover your mortgage/rent for the month following the surgery, or other essential living expenses such as electricity bills, phone bills, gas bills, etc. Assistance with lodging and travel is also available through the National Living Donor Assistance Center. Your transplant social worker can apply for these grants on your behalf.
American Transplant Foundation’s Patient Assistance Program
Will I be able to have children after I donate a liver?
There is no evidence that donating a liver impacts the ability to have children. Usually, doctors recommend that women wait at least 3-6 months before getting pregnant to allow the body time to heal after donating. Donors who become pregnant should notify their obstetrician or gynecologist that they have donated their liver.
What happens if I change my mind about donating halfway through the process?
A potential donor will never be forced to donate. A doctor often carries the burden of stopping the process and informing the recipient. For example, the doctor may tell the recipient that the donor is no longer a good match. At the end of the day, it is the potential donor’s decision whether or not they are comfortable donating. If you choose not to donate, the recipient will remain on the liver transplant list and will be able to look for another living donor.
What is the donor surgery like?
You will be admitted to the hospital the morning of surgery and you will go through a physical examination, including blood work, chest X-ray, and EKG (this can also be done the day before). If all goes well, you will be approved for surgery. If you pass the physical exam, the doctor will administer IV fluids and answer any remaining questions. You will then be escorted to surgery and the anesthesiologist will sedate you. Once you are fully asleep, you will be given a breathing tube to help you breathe during surgery and a catheter will be placed into your bladder. Then the surgery begins.
How can I prepare for the surgery?
It is important to have support systems in place before surgery. You’ll need help caring for yourself for a week plus after going home. Having someone in place to help with meal planning, child and pet care, running errands, and other day-to-day activities require planning.
How long will I need to stay in the hospital?
Usually, the donor is admitted to the hospital the same day the surgery is performed. The hospital stay after donor surgery averages five to eight days. The donor may be asked to stay in the area close to the transplant center for up to two weeks after the donor surgery.
What is the pain like?
Because the donor is recovering from major abdominal surgery, the donor has access to as much pain medication as needed for comfort in the first few days following surgery.
What is the recovery like?
You will need to avoid any heavy lifting for the first four weeks until your abdomen has completely healed. You should not lift any weights greater than 10-15 lbs. After four weeks, if you are feeling well and are not having any complications, you may begin to return to your normal activities, such as swimming, jogging, aerobics, cycling, etc. Begin slowly and build up gradually. Be very cautious with abdominal exercises.
Other recovery info: donors should wait to drive for 2-3 weeks post-surgery. Donors should not travel outside of the U.S. for 8-12 weeks post-surgery.
When can I go back to work?
Most people are able to return to work after eight weeks, depending on their recovery from surgery and the type of job they have. Donors with desk jobs may be able to return to work much sooner than donors with physically demanding jobs.
What happens if my donor liver is rejected?
It is possible, though not exceedingly likely, that the new organ will be rejected. In this scenario, the transplant recipient will be placed at the top of the liver transplant list and receive the next available organ.
Post-transplant, what must I do to take care of my health?
You will have check-ups with the transplant center to make sure that you are healing well after surgery. After recovery, you will return to the care of your regular physician. You won’t need to take any specific medication as a living donor.
Lung Transplants and FAQs
The Basics of Lung Transplants
What is a lung transplant?
A lung transplant is a surgery performed to remove a person’s diseased lung, which is then replaced with a healthy one from a deceased donor.
Are their different types of lung transplantation?
Yes, there are a few different types of lung transplants that can be considered.
- Single-lung or double-lung transplants in which either or one or both lungs can be replaced.
- Heart-lung transplant, when both the heart and the lungs need replacement because of permanent damage to both organs.
- Pediatric lung transplant for children with severe diseases such as pulmonary hypertension, pulmonary fibrosis, and cystic fibrosis with end-stage lung disease.
Where does the donor lung come from?
The donor lung usually comes from someone under the age of 65 who is brain dead but still on life-support. This is usually the result of some fatal accident the donor may have been in and it is only once all efforts to save their life have failed that organ donation becomes an option.
Can I be considered for lung transplantation?
A lung transplant is a last resort method for treating patients with severe lung failure. Possible patients for lung transplantation have usually tried all other medical treatments. To be a potential candidate, you must fit these criteria and be physically and mentally capable of undergoing surgery and post treatments. You can’t be considered for lung transplantation if you continue to smoke or heavily abuse drugs and alcohol. Even if you fit these criteria, your transplant team may decide you are still unfit for candidacy for several reasons, such as the existence of co-existing medical conditions that may be worsened by surgery or post medications.
What should I expect when being evaluated for candidacy?
Your doctor will refer you to a transplant center if he thinks you are a fit candidate for transplantation. During the evaluation, you will have a transplant team made up of surgeons, nurses, physical therapists, pulmonologists, and social workers that will evaluate you physically and psychologically. The team will interview you and your family to determine whether a good support system is present. You will also be given a number of heart, lung, and other lab tests to determine your physical condition. These tests include but are not limited to: a 6-minute walk, EKG, Cardiac Catheterization, nuclear cardiology studies, electrocardiogram, echocardiogram, chest CT scan, blood work, bone density test, pulmonary function tests, and any others your team finds necessary to complete a thorough evaluation. Your financial resources will also be assessed to see if you meet the program requirements.
If I am accepted into a lung transplant program, what then?
Once you are accepted into a transplant program you will be put on the national waitlist. While you wait for your transplant, you need to keep in good health. Follow all diet and exercise plans your transplant team recommends, take your medications, cease drinking alcohol and smoking, and see your pulmonologist on a regular basis. Optimizing and keeping up your health is essential to a successful surgery and a sure way to keep your name on the waitlist. You will also be given regular tests by your physicians while you wait. Make sure you keep active medical insurance and keep the hospital up-to-date on your current information. You should also give your transplant team a fast and efficient way to contact you if a lung becomes available. Be sure you can be contacted quickly wherever you go and be prepared in advance to get to the hospital on a moment’s notice.
What determines my placement on the waiting list?
In spring 2005, The United Network of Organ Sharing (UNOS) decided to change the way lungs were being distributed. The new policy gives a lung allocation score to each approved candidate over the age of 12. Your score reflects the severity of your illness and the predicted success of your surgery. It is calculated based on medical information gathered from lab values, test results, and disease diagnosis. A lung allocation score ranges between 0-100, and the higher the score, the higher your placement is on the waitlist for a new lung when it becomes available.
What happens once a lung has been identified for me?
Once a potential donor has been found for you, a transplant coordinator will immediately notify you. This is why it’s important to keep your contact information up-to-date with the hospital. The coordinator will then tell you what to do once you get to the hospital and will ask that you not eat or drink anything before arriving. Once you are admitted to the hospital, you will undergo blood work and other tests before surgery. Unfortunately, a call does not always mean that a transplant will happen. The donor organ may be found unsuitable upon closer evaluation and you will be sent back home. Keep in mind there is always a possibility that this may happen.
What are the risks associated with lung transplantation?
The purpose of your body’s immune system is to fight off any foreign bodies, such as bacteria or viruses that may bring you illness. Your new transplant lungs will be considered “foreign” by your body and as such your body’s immune system will produce anti-bodies in an attempt to destroy them. This process is known as rejection. To prevent rejection, your doctor will put you on medication that will help slow and control this process. These same drugs will likely weaken your immune system, leaving you more susceptible to infection. Rejection and infection are two of the major risks associated with transplantation. Other risks may result from long-term use of the post-surgery medications you will be taking. Problems that may arise are diabetes, kidney damage, and high cholesterol.
What is the surgical procedure for lung transplantation?
Prior to surgery, you will be given general anesthesia so you fall into a deep sleep. Once you are asleep and attached to the necessary monitoring lines, an incision is made to either the left or the right side of your chest depending on which lung is being removed. If it’s a double-lung transplant, an incision is made across your entire chest, just below the breast. Your lung is removed and then replaced with the healthy donor lung. A surgeon connects blood vessels to and from the donor lung as well as the airways between the new lung and you. In a double-lung transplant, one lung is removed and replaced before the same is done with the next lung.
In a heart-lung transplant, you will be attached to a heart-lung bypass machine that does the work of your heart while in surgery. Both lungs are removed and replaced closely followed by the removal and replacement of the donor’s heart.
How long is the recovery period and when can I return to school or work?
Recovery time varies from person to person but on average, lung transplant patients will stay in the hospital for 1-3 weeks after surgery. However, complications do arise, so you may need to stay in the hospital for a longer time. After discharge, you will have to make frequent visits to your hospital for the next three months. Following those three months, your doctor decides whether or not your visits should become less frequent. The average person takes 3-6 months to recover and return to a healthy and normal lifestyle.
What sort of medication will I be put on after the surgery?
Rejection is, unfortunately, a common risk of transplant surgery. To help prevent rejection, doctors will prescribe anti-rejection drugs, also called immunosuppressive drugs. These medications block the immune system to help protect and preserve the new organ and its function. Cyclosporins, azathioprines, and corticosteroids are the three main types of immunosuppressive medications and are usually prescribed in a combination right after surgery. Antibiotics, vitamins, diuretics, or other medications may also be given.
How will I know if my body is rejecting the new lung(s)?
Rejection is most likely to occur within the first three months after your surgery. Common signs include chest congestion, nausea, flu-like aches, coughing, fevers, chills, shortness of breath, and in some cases pain or swelling around the lung. Any general uneasiness should be reported to your doctor immediately.
After surgery, what will be expected of me?
After surgery, you will be put in the ICU and moved to a regular hospital room when appropriate. For the first three months after your discharge, you will make frequent visits to your hospital for blood tests, chest x-rays, lung functions tests, and any other tests your doctors need to check on your overall medical condition. If you’re doing well after those three months, your hospital visits will become less frequent. Overall, your main responsibility will be to maintain good diet and health and follow your doctor’s recommendations, such as an exercise rehabilitation program. Taking your medications as you should is also essential in preventing rejection. What matters most of all is the health of your new organ.
Are there support groups for lung transplant patients?
Check with your transplant center to see if there is a support group for lung transplant patients in your area.
The American Transplant Foundation has a free mentorship program available if you would like to speak with someone who has been through a lung transplant. Find a mentor here.
Heart Transplants and FAQs
The Basics of Heart Transplants
What is a heart transplant?
A heart transplant is a surgery performed to remove a person’s diseased or damaged heart, which is then replaced with a healthy and suitable heart from a donor. It is a procedure reserved for patients with severe heart failure.
Where does the donor heart come from?
Donor hearts come from someone who is brain dead but still on life support. All other attempts at saving their life have failed before organ donation even becomes an option. A donor is someone under the age of 65 with little or no history of heart disease or trauma to the chest. Unfortunately, donor hearts are hard to come by.
What diseases can lead to heart transplantation?
Various forms of heart disease can lead to transplantation, including but not limited to:
- Congenital Heart Disease
- Ischemic and Nonischemic Cardiomyopathy
- Severe Angina (caused by Coronary Heart Disease)
- Coronary Artery Disease
- Congestive Heart Failure
- Valvular Disease
Who is not a candidate for heart transplantation?
Heart transplant surgery is not for everyone. Since donor hearts are hard to come by, strict rules are put in place when approving someone for candidacy. It is likely you won’t qualify for candidacy if you suffer or have suffered from any of the following:
- Severe kidney, lung, or liver diseases
- Pulmonary hypertension
- Continued use of smoking, drugs, or alcohol
- Diabetes that has caused severe vital organ damage
- Active infection
What should I expect when being evaluated for candidacy?
Once your doctor refers you to a transplant center, you will be evaluated by a transplant team-a group of specialists that will validate your candidacy. They will evaluate you on a physical and a mental level. This team is usually made of a cardiologist, a cardiovascular surgeon, a transplant coordinator, a social worker, a dietician, and a psychiatrist. An assessment of your finances will be performed, and expect for you and your family to be interviewed (this is just procedure to see whether or not you have a good support system at home). Your medical examination will consist of tests to determine your overall physical condition. These tests can include but are not limited to: an EKG, echocardiogram, cardiac catheterization, liver tests, kidney tests, blood tests, skin tests, tests for cancer, exercise tests, dental examinations, pulmonary function tests, and tissue and blood typing to help prevent rejection. Other tests may also be performed to complete a more thorough examination.
If I am chosen as a candidate for heart transplantation, what happens next?
If you are dubbed a candidate for heart transplantation, you will then be put on the national wait list for a heart. While you wait for a donor heart it is vital that you keep up your health. You will receive on-going medical treatment for heart failure and other existing conditions that you may have. Your transplant team may have also administered suggestive diet and exercise plans to you. If this is the case, it is in your best interest to follow them and to also quit any further smoking, drinking, and drug use. Your transplant team will also perform routine tests and checkups to check your overall condition while you wait. A device you might consider receiving while you wait is called a ventricular assist device. A ventricular assist device is an implanted mechanical pump that helps your heart pump enough blood to the rest of your body. Many patients on the waitlist are very ill and this device is considered an effective treatment.
What determines my placement on the waiting list?
The wait-list for a donor heart is determined according to the blood type of the donor, size of the heart, the severity of illness of the recipient, and the geographic location of the recipient. When a donor heart becomes available, its information is typed into the UNOS computer and is compared to the wait list. The computer then comes up with a list of patients starting locally, and then spreading regionally, and finally nationally when need be.
What are the risks associated with heart transplantation?
The purpose of your body’s immune system is to fight off any foreign bodies, such as bacteria or viruses that may bring you illness. Your body will consider your new donor heart as “foreign,” and as such your body’s immune system will produce anti-bodies in an attempt to destroy them. This process is known as rejection. In order to prevent rejection, you will be put on medication by your doctor that will help slow and control this process. These same drugs will likely weaken your immune system, therefore leaving you more susceptible to infection. Rejection and infection are two of the major risks associated with transplantation. Other risks may result from long-term use of the post-surgery medications you will be taking. Hardening of the arteries may also occur post-transplant and may lead to further surgery.
What is the surgical procedure for a heart transplant?
Before the surgery begins, you will be put into a deep sleep by general anesthesia. An incision is then made in the chest through the breastbone. Your diseased heart will be removed and in its place, the surgeons will stitch the new and healthy heart. The blood vessels of your old heart will be reconnected to the donor heart, which should then warm up and begin to beat. If this is not the case, then the surgeon will try to start your new heart with an electric shock. During the entire process, you will be connected to a heart-lung bypass machine that does the heart’s work while yours is stopped during surgery. It sends out enough blood and oxygen throughout your body to keep your blood circulating. Once your new donor heart begins to beat, you will then be taken off of this machine. After surgery, tubes are entered into the chest to drain out any air, fluids, or blood, allowing the lungs to re-expand over several days. You may also be administered medication for a few days to help you sustain a regular heartbeat.
Surgery for a heart transplant may take from four to six hours. Another type of heart transplant that may be performed is a heterotopic transplant. In this type, the surgeon will typically place the new heart on top of the old heart and just join them together.
How long is the average recovery period and when can I return to school or work?
After heart transplant surgery, the average person remains in the hospital for about 1-2 weeks. Once discharged, you will be required to make frequent trips to your hospital for the next three months for follow-up tests. During this time, you will be very susceptible to infection due to the medication, so it’s highly recommended you stay away from large crowds. After 3 months your doctor will decide whether or not your visits should become less often. The average person returns to an active and healthy lifestyle within 3-6 months post-surgery.
What medications will I be on after surgery?
Unfortunately, rejection is a common risk of transplant surgery. To help prevent rejection from happening, doctors will prescribe to you anti-rejection drugs (also called immunosuppressive drugs). These medications act by blocking the immune system to protect and preserve the new organ and its function. Cyclosporins, azathioprines, and corticosteroids are the three main types of immunosuppressive medications and are usually prescribed in a combination right after surgery. You may also be given antibiotics, vitamins, diuretics, or other medications.
Can complications arise from the medications I’ll be taking?
Long-term use of immunosuppressants can, unfortunately, lead to complications. Unwanted side effects of post-transplant drugs are high cholesterol, diabetes, osteoporosis, high blood pressure, kidney disease, liver disease, and some cancers. Immunosuppressants also affect your immune system, increasing your risk of infections. Discuss any concerns you may have with your transplant team.
What are the signs that my body is rejecting the new heart?
If you experience any of the following symptoms post-transplant surgery, it is important that you let your doctor know immediately. Early rejection is treatable.
- Unexplained fatigue
- Shortness of breath
- Weight gain or fluid retention (i.e., swollen knees)
- A fast or irregular beating of the heart
- Reduced amounts of urine
After surgery, what will be expected of me?
After surgery, you will be put in the ICU and moved to a regular hospital room when appropriate. For the first three months after your discharge, you will make frequent visits to your hospital for blood tests, chest x-rays, lung functions tests, and any other tests your doctors need to monitor your overall medical condition. If you’re doing well after those three months, your hospital visits will become less frequent. Overall, your main responsibilities will be to keep good diet and health and follow your doctor’s recommendations, such as following an exercise rehabilitation program. Taking your medications as prescribed is also essential to prevent rejection. What matters most is the health of your new organ.
Are there support groups for heart transplant patients?
Ask your transplant center if there is a local transplant support group in your area.
The American Transplant Foundation has a free mentorship program available if you would like to speak to someone who has had a heart transplant. To find a mentor, click here.
What financial resources are available?
See this article on Disability Benefits for heart transplant recipients.
The American Transplant Foundation has a small Patient Assistance Program that can assist with a one-time grant to help cover the cost of medication and insurance. Have your social worker or transplant coordinator apply here.
Read about the journey of a heart transplant patient.
Read the amazing story of a heart transplant patient’s journey here.