The Surgery...and Afterwards - Living Donors Online

The Surgery

At this stage, you’ve passed the donor evaluation, and it’s time to donate.

Before the Surgery
A date for the surgery will be scheduled. Note that the date will depend in part on the health of the recipient since he or she must be ready for surgery, too.

Here are some tips for preparing for and recovering from surgery in the hospital: Surgery Tips.

You will be put on special restrictions as you get close to the surgery date. Females using birth control pills will need to stop taking pills for 30 days prior to the surgery. (You will need to use barrier forms of contraception in the meantime.) If you use nicotine products (cigarettes, cigars, vaping, chewing tobacco, etc.), you’ll need to stop at least four weeks before the surgery date. You’ll be asked to stop taking aspirin and nonsteroidal anti-inflammatory drugs such as ibuprofen (e.g., Advil) at least a week before.

You will likely be instructed to stop eating solid food starting at noon the day before, and then no food or drink starting at midnight. You may be instructed to take a laxative the day before so you have a bowel movement before the surgery. Check with your team about taking your prescription medications.

On The Big Day
You and the intended recipient will be admitted to the hospital the day before or the morning of the surgery. On the day of the surgery, you’ll be “prepped,” which includes inserting an IV, dressing in a hospital gown, and possibly taking a mild sedative. You’ll be wheeled into the operating room. The surgeon will greet you and the nurses will get you situated for the surgery. The anesthetist will start the anesthesia through the IV, you will count backwards, and you will then be unconscious.

While you’re unconscious, a tube will be put down your throat to help you breath. (The tube is removed when the surgery is complete, but you may have a scratchy throat for a few days afterward.) A small tube called a catheter will also be run into your bladder. The catheter is needed to drain your bladder right after surgery while your body is still “sleepy” from the anesthesia.

The most common form of living liver donor surgery is “open” hepatectomy. That means the surgeon will make a large incision in your abdomen to get access to your liver and remove a portion of it. There are different types of incisions, such as an “inverted L” or an “upper midline” (from your breast bone to your navel). Be sure you ask your surgeon what type of incision he or she will make so you know what to expect after the surgery. (Note that laparoscopic surgical techniques that use much smaller incisions are starting to be used for living liver donation but are not yet common.)

The surgeon will inspect your liver and confirm which segments you will donate and which segments you will keep. Your liver is divided into seven segments, and the segments you donate depend on the size of your liver, what is needed by the recipient, and the amount you need to keep.

There are three different combinations of segments used in living liver donation:

Right lobe donation. In this case, segments 5, 6, 7, and 8 are donated, and you keep segments 2, 3, and 4. This approach is the most common (about 65% – 70% of surgeries) and is used for donating to an adult. The surgeon will also remove your gallbladder.
Left lateral donation. This approach removes only segments 2 and 3 for donation; you keep segments 4, 5, 6, 7, and 8. This approach is typically used to donate to a child. Your gallbladder usually is not removed.
Left lobe donation. Segments 2, 3, and 4 are donated in this approach; you keep segments 5, 6, 7, and 8. This approach is for donating to an adult but where not as much liver is needed for the recipient as would be provided by a right lobe donation. Your gallbladder is removed in this operation.

After the liver segments are removed, the surgeon will place a small tube into your body to allow for drainage of fluids that might collect around your liver after the surgery. The incision will then be closed with sutures and staples.

The surgery takes five to seven hours.

Post-Op Recovery
After surgery, you will be moved to a recovery room for an hour or two. Once you fully regain consciousness, you will be wheeled into the intensive care unit (ICU) where you will stay for a day. If all is well, you will move to your hospital room. You will be instructed on how to use a deep-breathing instrument to prevent pneumonia. You’ll be encouraged to sit up and walk as soon as possible. You will also transition from IV to oral pain medications.

The IV will be removed once you’re able to take nourishment by mouth. The catheter will be removed when you feel you’re ready to urinate on your own.

Your ability to go home is a function of your ability to deal with the pain and your recovery from the anesthesia. Generally, you’re able to leave when you can eat, walk, urinate, and have a bowel movement. In general, liver donors are in the hospital four to seven days.

Your Recovery at Home
Note that your recovery is far from over even though you have left the hospital. The effects of anesthesia can last for days. One effect is that you might feel surprisingly good shortly after the surgery despite having had a portion of your liver removed. That’s because the anesthesia has not left your body and is masking the pain you otherwise would feel. So be prepared to feel worse a few days later, and have your pain medications ready.

You’ll also be on those pain medications for a while and they have side effects. One is nausea, so you might not have much of an appetite for a few days. You can ask for anti-nausea medication.

Some living donors have recommended wearing an abdominal binder after the surgery. Your abdomen will be healing and will benefit from additional support. For example, it can limit the pain following a laugh or a sneeze.

Be sure to keep an eye on your incisions. You’ll be given instructions on how to take care of them and what to look for if there are problems.

The transplant team will also advise you to avoid alcohol for at least three months (some teams say 12 months) while your liver regenerates. You will also want to avoid fatty meals for at least three weeks.

You will likely be unable to do many activities for a couple of weeks. Be sure you have your support network in place to help you with meals, cleaning, driving, taking care of kids and/or pets, and other household activities. Most transplant centers advise against any travel for the first two to three weeks following surgery.

Your ability to return to work depends on many factors, such as the nature of your work. If you do office work, you should be able to return sooner than someone with a physically demanding job. A survey of living liver donors showed 50% of donors were back to work within four weeks. About 75% were on the job within eight weeks, and all of them were back to work within 12 weeks. For your purposes, you might plan on 12 weeks and hope for something shorter.

You may still not be 100% at the 12-week mark. Most donors say it takes four to six months before getting back to their pre-donation self.

Medical Risks After Living Donation Surgery

There are risks to the donor during and after the surgery. Unlike most other surgeries, you — the patient — are actually in excellent health when undergoing surgery. Therefore, the risks are attributable to the surgery itself and the removal of a portion of your liver and possibly your gallbladder. These risks are small and manageable, but in the interest of full disclosure, here are some of the possible complications:

Pain. This is a certainty, and it is one aspect of donation that donors tend to underestimate. Fortunately, pain can be managed through medication.
Complications. Medical research shows as many as 40% of living liver donors have some form of complication shortly after surgery. The complications include infection of the incision, allergic reaction to the tape used to bind the incision, minor bleeding, urinary tract infection, and blockage of the intestine. A bile leak is another common form of complication for liver donors. Minor complications usually resolve on their own.
Reoperation. Some complications may be significant enough that you need to go back into surgery. Research shows reoperation occurs in 2% or less of donations. Examples of major complications that require reoperation include incisional hernia, bleeding, reduced or stopped bile flow, and bile leakage.
Readmission. You may have problems after you leave the hospital that require you to return to the hospital. A little less than 5% of donors return to the hospital within six weeks (11% within one year) because of ailments like nausea, vomiting, bleeding, constipation, diarrhea, and infection.
Death. It happens. Fortunately, it is exceedingly rare. The mortality risk is estimated to be about 0.08% (that’s about one death in every 1,250 procedures.)

Psychosocial Risks After Surgery

There is limited research on the psychosocial impact of donation immediately following donation surgery. However, LDO participants who have donated report these kinds of psychosocial and relationship changes:

An increase in self-esteem for having done something extraordinary for someone else.
Positive feelings after seeing the improved health of the recipient.
A temporary mild depression, perhaps because attention tends to shift to the recipient after the donation and because of a lower level of excitement than the level that preceded the surgery.
A change — sometimes positive and sometimes negative — in the relationship with the recipient, family members, and others close to the donor and recipient.

About the Recipient

Of course, the living donor is not the only one who undergoes surgery during a successful transplant operation. The recipient also undergoes major surgery. The obvious benefit of the surgery to the recipient is getting a functioning liver. The change in the recipient’s health following donation can be dramatic. Longer term, the recipient benefits from a better lifestyle as well as prospects for a longer life expectancy.

The recipient can also face risks from the surgery. Infection, bleeding, and complications just like the donor surgery are possible. It’s not unusual for the recipient to have a “rejection episode” where their body fights the newly donated organ despite receiving anti-rejection drugs. There is a risk that the recipient will lose the organ. UNOS statistics show that about 88% of living donor livers survive after a year. That means 12% of them fail. Recipients can also struggle with the side effects of the anti-rejection drugs. They may experience tremors, hair growth, headaches, high blood pressure, fluid retention, and increased susceptibility to infection. Some of these side effects can be addressed by changing the level of medication. Over the long run, the donated liver may be lost due to a return of liver disease or cancer and complications from taking anti-rejection drugs.

Despite these risks and the side effects of the anti-rejection drugs, recipients report that the results of living donation are far superior to not having the transplant.

Afterward…

The Longer-Term Physical Consequences of Donation

The liver possesses amazing regenerative properties. Medical research shows that within six months of the surgery, the remaining portion of the donor’s liver grows back to about 85% (on average) of its pre-donation size, and about 90% after one year. The results are similar for both right lobe and left lobe donors. Note that the liver does not assume its former complete anatomy. Instead, the remaining portion enlarges.

Medical research on the long-term consequences of living liver donation are few in number. Existing research has had the following observations:

Problems with the incision. As many as 25% of living donors had issues with the incision a year or more after donation, including hernias, discomfort with the incision, and painful scarring in the abdomen (adhesions). Over half the hernias were reported years after the donation.
Digestive tract issues. General problems with the digestive tract after donation include intolerance of fatty foods, diarrhea, heartburn, and the need to change eating habits.
Platelet levels. Average platelet levels in living liver donors tend to be lower than before the donation. However, fewer than 10% of donors have had platelet levels that are so low they require attention.
Pregnancy after donation. One research study of pregnancies of living liver donors compared predonation pregnancies to post-donation pregnancies. The study found a small percentage (3.5%) of post-donation women had abnormal liver enzymes during pregnancy. There was also a higher percentage of cesarean deliveries (35%) for post-donation pregnancies versus predonation pregnancies (20%), possibly related to issues with the donation incision.
Chronic pain. One study reported 27% of living liver donors reported persistent pain one year after donation, although the pain was mild and not life threatening.
Liver disease. UNOS data show the risk of your needing a liver transplant because of the failure of the portion you kept is very low. Only 0.06% of living liver donors have had liver failure.
Life expectancy. Findings indicate there no decrease in longevity among living liver donors after donation.

More research is needed to see what the effect of donating a portion of your liver means to you physically 20, 30, and more years from now.

The Longer-Term Psychosocial Consequences of Donation

Psychosocial research of living liver donors shows that the vast majority (92%) were satisfied with the living donation process, and 97% would donate again. Half of the donors also reported improved relations with the recipient and family members. And many donors (35%) said the donation improved their self-esteem.

Most living liver donors do not experience depression or anxiety following donation. However, a couple of studies have shown a small percentage of donors (4% – 22%) experience depression or anxiety that they didn’t have before donation.

More and longer-term studies are needed.

The Financial Consequences of Donation

Most discussion of the financial impact on living donors focuses on the time before and around the time of donation. But are there longer-term financial consequences of liver donation? Many LDO visitors have said the answer is yes, and research into the issue confirms it.

Most frequently, the impact takes the form of denial of insurance or higher premiums for coverage. Donors have reported problems when purchasing health, life, and disability insurance. The lack of long-term health research and the failure of the medical community and insurance companies to agree on the long-term health consequences of donation contribute to the problem. For example, some insurance companies consider donation a “preexisting condition” even when the donor’s physician attests to the good health of the donor.

Donors in countries with universal health insurance do not have issues with denial of health insurance coverage or higher premiums. U.S. donors since 2014 also have protections, specifically that health insurers cannot deny coverage or charge a higher premium because you are a living donor. However, not all forms of medical insurance are protected. Supplemental medical coverage (sometimes referred to as “critical illness insurance” or “indemnity insurance”), Medicare supplemental coverage after the initial enrollment, short-term medical insurance, and faith-based cost sharing programs are exempt from the protection. Fortunately, because the vast majority of people in the U.S. have access to protected coverage, most donors no longer report problems with health insurance.

However, problems with life and disability insurance continue. Studies of living liver donors showed between 3% and 11% of donors had difficulties obtaining or keeping insurance.

In the U.S., several states have enacted insurance protections for living donors that include life and disability insurance. A list of states and the status of those protections is maintained here. There is also proposed federal legislation to prevent insurers from denying coverage or charging higher premiums to living donors. However, despite bipartisan support, the bill has not moved toward passage.

If you find yourself being denied insurance coverage or charged higher rates because you are a living donor, please contact us and we will work with you, your doctors, and the insurer to see if we can address the situation. We also encourage you to lobby for legal protections at the state and federal level by writing to your legislators. You can also help the cause by participating in medical research, which will help resolve the open issue for insurers as to whether donating has long-term implications for your insurability.

Another long-term financial consequence of donation is the cost of additional medical expenses that may arise as a consequence of your being a living donor. One source is annual physical exams and testing of your liver health. Because transplant centers don’t follow donors after two years, you will need to take responsibility for monitoring your liver’s health yourself. A suggested process, described in the next section, involves an annual physical exam and tests of your liver. Even if you are insured, there may be out-of-pocket expenses for copays and deductibles associated with the exam and tests.

Another source of expenses might be the cost of additional prescription medicines or other treatments for conditions that are slightly more prevalent among living donors. For example, there is a chance of having issues with your incision, gastrointestinal problems, or low platelet counts. You might also want psychological counseling sessions and anti-depression medication to treat depression or anxiety. Depending on your insurance, you may have additional out-of-pocket expenses as a result of these treatments.

These are expenses you may want to consider including in your budget.

Lifestyle Choices: Staying Healthy After You Donate

After your donation and for the rest of your life, you’ll want to consider taking steps to ensure you maintain your health:

Participate in the post-donation exams provided by your transplant center. Centers often have a check-in about two weeks after the surgery. Then they are required to check with you six, 12, and 24 months after you donate. It’s important to participate in these follow-up visits because your liver is regenerating during this time period, so you and your transplant team need to know how things are going. Make sure the transplant center has your contact information (home address, email address, and phone number) so they can reach out to you when it is time for the follow up.
Take responsibility for maintaining your health by scheduling annual physical exams. After the two years of post-donation exams by your transplant center, you are on your own. Therefore, you should consider having an annual physical exam that includes special attention to your liver function. Let your primary care physician know you are a liver donor so he or she can include special tests that monitor liver health, such as measuring liver enzymes, bilirubin, and platelet counts. Additional tests can see if you have diseases that are hard on your liver, like obesity and diabetes. To help you remember to have an exam each year, you could give yourself the exam as a gift on your birthday or other annual event you’d like to celebrate like the date of your donation surgery. If you have health insurance, this exam and the tests should be fully covered as preventive care. Check with your doctor’s office and your insurance company to make sure. Even if you have out-of-pocket expenses, it might be worth having a historical record of your health. Note that the information provided here is based on medical research and the recommendations of professional organizations. It should not replace the care and advice of qualified medical professionals. You should use this information with your primary care physician and any specialists you have.
Check on your mental health. There are events related to donation that can happen long after your surgery that might affect your mood or satisfaction with life. If feelings about yourself or others change in a negative way, tell someone you trust about how you’re feeling. You can get help from mental health specialists such as a psychologist or psychiatrist. There are also nonprofessional support groups for living donors like those you can find on Facebook. You can also post a note on the LDO message board to share your experiences and feelings. You might find changes to your diet and exercise, getting more sleep, or adding meditation or yoga to your routine can help. If you want to try a mental health check up, here is an online survey that provides resources and tools based on your results.
Avoid excessive alcohol consumption. Alcohol is hard on your liver. Drinking too much over a long period of time can damage your liver. Here are guidelines from the American Liver Foundation.
Maintain a healthy weight. Obesity can lead to diabetes and arteriosclerosis (clogging of arteries), putting strain on your liver. It can also result in a “fatty liver” (steatosis), which could result in inflammation and cirrhosis (scarring of the liver). Get professional help with diet, exercise, medication, and — if necessary — surgery to keep your weight under control.
Adopt a liver-friendly diet. Avoid consuming high levels of fat, salts, and sugars, which make it harder for the liver to do its job. Here are some meal plan ideas.
Use caution with certain medications that can damage your liver. Over-the-counter pain medications like acetaminophen (Tylenol) and non-steroidal anti-inflammatory drugs (NSAIDS) like aspirin and ibuprofen (Advil) can cause liver problems if used in large doses or over long periods of time. Some prescribed medicines also have the potential of damaging your liver, such as statins, amoxicillin, antifungals, and some antiviral medications. Make sure your doctor and pharmacist know you are a liver donor so they can advise you on which medications are OK and in what amounts.
Drink coffee. Studies have shown that drinking coffee can have beneficials effects on liver health. But be careful with the amount of cream or sugar you put in your drink.
Check with your doctor about using supplements. You might think taking vitamins or supplements that are supposed to improve your health is always good, but sometimes it’s not clear because many supplements have not been thoroughly studied or approved by government health agencies. Some supplements have been shown to be damaging to the liver. Check with your primary care physician or a hepatologist (liver specialist) before taking supplements.

Advocate for Future Donors

Once you’ve joined the ranks of living liver donors, you can help improve the living donation experience for future donors by being an advocate. Here are some ways you could do that:

Support legislation providing financial protection for living donors. Living donors are exposed to financial risks, such as denial of insurance and higher premiums, unreimbursed expenses associated with the donation, and lack of pay and job protection while on leave for the donation. Fortunately, legislation providing protections is becoming more common. As a living donor, you can help by supporting living donor protection laws. Raise awareness if your state or country does not provide adequate protection. Contact your legislators to sponsor and vote for living donor bills. In the U.S., you can keep track of how well each state is doing with living donor protection laws here.
Participate in research. If you are in the U.S., commit to the 6-, 12-, and 24-month follow-up medical exams. The information from those exams is collected by UNOS and supports research about living donation. Also, you may be contacted by medical and psychosocial researchers to participate in studies of living donors. Please consider being a participant so the amount and quality of information about the long-term consequences of donation can improve.
Be a Living Donor Buddy. Research has shown that potential living donors have better experiences when they are able to talk with someone who has already gone through the donation process. That’s why LDO created Living Donor Buddies. These buddies are living donors who volunteer to share their experiences, answer questions, and provide support to potential donors. If that sounds like something you would like to do, sign up here.
Share your experience. Potential living donors also like to hear about the actual experiences of living donors — stories written by someone who went through the evaluation, the surgery, and the recovery — rather than relying on second-hand information from the transplant center. If you would like to share your experience — whether good, bad, or a mix of both — you can add your story here.
Participate in living donor message boards and Facebook groups. Potential donors often seek information about living donation by searching on the Internet. While these searches turn up results mainly from transplant centers, many potential donors want to speak directly to former donors. As a donor, you can share your experience, knowledge, and support by participating in living donor message boards and groups. Below are examples:
Living Donors Online message board
Living Donors Online Facebook group
Living Liver Donor Support Group Facebook group
Living Donors With Complications Facebook group
Living Donors Support Group – Only donors & those considering donation on Facebook

Questions?

Do you still have questions? The best thing to do is leave a message on the LDO message board or the LDO Facebook group page. We would be happy to help you with any questions or issues you may have.

All of us at LDO hope you have a wonderful donation experience!