Liver Transplant Process

Megan: Hi, I'm Megan with the inpatient liver transplant team at The University of Kansas Health System. I'm going to be reviewing the post-transplant discharge material with you today. First of all, I'm going to start out with explaining a little more about our team. We have teams, as you know, made up of the pre-transplant coordinators, who you would be familiar with, and then we have an inpatient coordinator, which is myself, and we have post-transplant coordinators who will be assisting you once you've been discharged from the hospital. We also, in your binder, you can see that we list out the liver doctors that we have here at KU, as well as our transplant surgeon. On the next page you'll see that there's a picture of a liver, the first one is a picture of a cirrhotic liver, and the one right beside it is a picture of a healthy liver.

Megan: Just as a side note, if you had your gallbladder prior to transplant, you no longer have it. We don't transplant gallbladders. I do want to review a little bit about contacting us in the transplant center, just to make sure you know how best to get a hold of us. The transplant center is open Monday through Friday, 8 a.m. to 4:30 p.m., excluding holidays. And if you have any scheduling issues or need to contact your outpatient transplant coordinator, you can get ahold of us at the 913-588-6183 number and you choose option to speak with a nurse.

Megan: We also have a transplant nurse on call number. You may have used this when you were prior to transplant. This is after hours, it's for emergencies, not a typical routine call. You can dial 913-588-5000, that will send you to the main hospital number and ask the hospital operator to page the liver transplant coordinator on call and they will page us. Again, this is after hours, so they'll page us at home. Please give us about 15 to 20 minutes to return your call. One of us can be reached 24 hours a day, but we do ask that these are emergency calls, and I will go over in a few moments what an emergency call will be. Again, we ask that you wait 15 to 30 minutes for a return call. And if you do not receive a call within 30 minutes, call the operator again. If it is an emergency, please call 911.

Megan: So I'm going to review, first of all, what we consider a 911 emergency. Once you've discharged from the hospital, we expect everything go perfectly fine. But if there is an event, one of the following events, we ask you that you don't worry about calling one of us nurse coordinators, we want you to call 911. If you experience shortness of breath or difficulties breathing, if you have chest pains, if you have severe abdominal pain, or if you have vomiting of blood, blood in your stool, or if you lose consciousness, so if you faint. And again, this is why it's important to have your caregiver with you for these first couple of weeks after you’re discharged, if anything were to happen, then we can make sure that they're able to call for you if you're not able to call for yourself.

Megan: If you are admitted anywhere other than KU hospital, have the hospital doctor call our liver transplant doctor, or you can also call our on call coordinator phone number at the 588-5000. If it's during the day, during business hours, you can also call the clinic number, the 588-6183. Reasons why you might call us, these are the emergency calls to the nurse coordinator, this isn't necessarily a 911 emergency call, it's more of a call that you don't need help immediately, but these are reasons why we definitely want to know so we can address them quickly.

Megan: We will give you a digital thermometer if you don't already have one at home prior to leaving the hospital. If you feel like you may have a fever, if you check your temperature and it's above 100.5, we want you to call us immediately. Please don't wait to call us regarding a fever, it's very important that you call us. A fever can be a sign of infection or rejection, and it's important that you call us as soon as possible. An increase in pain or a new pain in your transplant area, we want you to call us. Severe diarrhea, if you have more than 6 stools in a 24 hour period, we want you to call us. In that case, it would be very difficult to replace your hydration, just drinking it, so we might need to give you IV fluids. So please call if you have more than 6 stools in a 24 hour period. Same if you have vomiting or nausea, so you're unable to keep any food, drinks or your medications down for a whole 24 hour period, we definitely want you to give us a call within that 24 hour period.

Megan: Keep an eye on your incision, on your abdominal incision. If it produces pus, foul smelling discharge, if it's tender, warm, becomes really red or starts to separate from the staples or starts to open up, we want to know about it. So again, if this happens on the weekend, on a holiday, late at night, please let us know. If you're having difficulties urinating or you're having burning with urination, please call us. That could be a sign of a UTI or something more serious, and we want to be sure that we address it right away.

Megan: If you become jaundiced, so if you have yellowing of the skin or the whites of your eyes, you may have had that problem prior to transplants, if that starts to worsen after transplant, that's something we want you to call us about. If you have consistently clay or pale colored stools, so light colored stools, we want you to give us a call. That could be a sign that your bile isn't flowing freely the way we want it to through your liver. So it's something that we want to know about. If you have an unexplained rash anywhere on your body, please call us about that as well.

Megan: On the next page, we discuss calls to the office during working hours. So these are just, if you have any questions regarding your lab results, your appointments, any medication refills you may need, or if you have any questions about new medications, and this includes herbal and over the counter medications or any new medications that have been prescribed to you by a doctor that's not affiliated with The University of Kansas Health System, please call us about if you are going to have an elective surgery and if you have an emergent surgery, just notify us as soon as you are able.

Megan: We want to make sure that we are aware if you're hospitalized and if you need any prophylactic antibiotics or anything, as in prior to surgery, because you're immunosuppressed and your natural immune system has been lowered, you're going to be more likely to have a bacterial infection, to develop that, that can possibly come about from a surgery. So we want to make sure that we treat you with the appropriate medications before you have an elective surgery. And again, if it's an emergency surgery, we just want you to call us as soon as you're able, so we can contact your medical team if we need to and make sure that you're on the right medications.

Megan: So follow-up information, what is it going to look for you schedule wise once you've been discharged from the hospital? You will see our surgery nurse practitioner right after you are discharged from the hospital. She will see you at that first appointment within a few days from discharge. She's going to make sure that everything is going well, she'll take a look at your incision, and discuss any questions you may have, but we make sure to have close follow-up with you. So the surgery transplant team will monitor you up to 6 months, but at 3 months after transplant, you will have an appointment, a follow-up appointment, with your hepatologist, with your liver doctor, and that appointment, I will schedule for you prior to discharging from a hospital, so you'll know when it is. I will also schedule that post follow-up that you have immediately after discharge within a few days, I'll schedule that for you as well and I will give you all of those appointments prior to leaving the hospital.

Megan: So after 6 months, your hepatologist will be your primary doctor following your surgery transplant, within those first 6 months, just to make sure that you are healing properly and that everything is going well from that perspective. But once those first 6 months are up, we're confident and that you've healed and that you can just be taken care of by your liver doctor from then on out. You will see your liver doctor on an annual basis then. So every 12 months you'll see your physician, unless you're notified that you need to see them more often. We do ask that you maintain a good relationship with your primary care doctor or your gastrointestinal doctor. We want to make sure that your primary care physician is looped in on your care because they're the doctor that will see you while you're home, if you have any kind of common illnesses like the flu or a sinus infection, something like that. We just want to make sure that you maintain that relationship. So we ask that you schedule a follow-up appointment with your primary care doctor within 2 to 3 months after transplant.

Megan: Once you're discharged, you will have labs drawn twice a week here in the Center for Transplant, in our lab. So on the first floor of the main hospital building, in the Center for Transplant, where you've come for your previous appointments, this is where you'll get your labs drawn, and then sometimes you'll have an appointment afterwards, sometimes you won't, and we'll let you know. The first Monday and Thursday, for 2 to 3 weeks after transplant, you will have to get your labs drawn here at KU, at the hospital. We will let you know, your post-transplant coordinator will let you know, when you're free to get your labs drawn closer to home. If The University of Kansas Hospital is close for you, you can of course continue to get your labs drawn here, that's fine.

Megan: So the way the lab schedule typically works after transplant is, again, you will have your labs drawn twice a week for the first 2 to 3 weeks here, and that will be on Mondays and Thursdays, then once you have been cleared, you'll only have to get your labs drawn once a week, and that will be until you've reached the 3 month mark after transplant. After that 3 month mark, you'll go to once every other week, so twice a month, then you'll get your labs drawn. And that will be until you reach 6 months post-transplant. Once you've reached the 6 month mark, you will go to just once a month. And we want you to get your labs drawn once a month from then on out. Your post-transplant coordinator will let you know once you're free to get your labs drawn closer to home, and then again, as each step progresses to you needing labs less frequently, your post-transplant coordinator will update you.

Megan: There will be occasions when you might be asked by your post-transplant coordinator to get blood drawn more often, it just depends on your condition. So if your lab results, if there's something about them that makes your doctor want to get them drawn more frequently, we may ask you to do that. It will change periodically, but that schedule I just covered is how it typically goes. We also ask that you don't take your immunosuppression medications, these are the medications like Prograf, Cyclosporine, Rapamune, Cellcept, or Myfotric, we don't want you to take them before your labs are drawn. So on the days that you have your labs drawn, we ask that you hold those medications, so wait to take those medications until after your labs have been drawn.

Megan: On the next page, I'm going to talk a little bit about what to do if you miss a dose of immunosuppression medication. So again, it's very important, to prevent rejection, that you don't miss your doses of your immunosuppression. We have a 6 hour window that we'll have you use to help you get back on track. So if you miss a dose of your immunosuppression medication, like your Prograf or your Cyclosporine, or your Rapamune, if you miss a dose and you realize within a 6 hour period that you missed it, go ahead and take that dose, no matter what time, as long as it's within that 6 hour window. For example, if you normally take your med at 8 o'clock in the morning, and it's 11 o'clock when you remember to take it, you're still within that 6 hour window, so go ahead and take it then, and then just go to your next regular scheduled dose at 8 p.m.

Megan: However, if it's been more than 6 hours since you would normally take it, so more than 6 hours after 8 a.m., say it's 4 in the afternoon when you remember that you did not take your morning dose, we want to make sure that, don't take the dose when you remember it since it's outside of that 6 hour window, we want you to go ahead and skip your morning dose then, and go to your next scheduled dose, which is at 8 p.m. that night. We also want to let you know that if you feel like you're going to be sick and vomit up your medications, don't take them again, just continue on with your regularly scheduled doses. So say you're not feeling well in the morning, you get sick right after you take your medication and you vomit them, go ahead, don't retake that dose, just go to your next scheduled dose that evening.

Megan: So medication refills, again, these medications that are protecting your liver from being rejected, it's very important that you don't run out of them. So we want you to call your pharmacy if you need to get any refills on your medications, and if you don't have any refills remaining, your pharmacy will call our office for approval. If you get your medications filled at the KU Outpatient Pharmacy, please call the pharmacy refill line, and it's listed there at 588-2361. Again, make sure that you call your pharmacy for refills within 5 business days before you run out. It's very important that you remember that. If your insurance is contracted with a mail order pharmacy for your immunosuppression medications, make sure that you call the mail order pharmacy at least 10 business days before you run out. Sometimes it takes longer to get to you from the mail order pharmacies.

Megan: Over the counter medications. As you probably know, you're not to take any ibuprofen products from here on out. Oral Acetaminophen, the generic form of Tylenol, is going to be the form of medication that you will use for a fever reducer, for mild headaches, that sort of thing. So we just want you to know that you're not to take any ibuprofen products, Motrin, Advil, Naproxen, Aleve, as those medications can cause damage to your kidneys, and it's important when you've had a liver transplant, that we keep those kidneys as healthy as possible.

Megan: The transplant pharmacist will meet with you, and will give you a list of the over the counter medications that are safe to take. This is a very useful piece of paper because you won't have to call us and ask us. There's a list of all sorts of symptoms and what is safe to take with the immunosuppression medications you're taking. Just remember to call your transplant coordinator before taking any new medications. And this could be a medication that's prescribed by a local physician or an over the counter medication that's not on that previous list I talked about. It's just important that you know, that there are medications that will interact with your immunosuppression medications, and if they do, your local doctor may not be aware of that. So that's why we ask you to call us if there's any medications prescribed to you by a non KU Health System doctor.

Megan: As a reminder, and I know this was covered while you went through your pre-transplant evaluation class, it is an expectation with our health system after transplant, well, prior and after transplant, that you do not drink any alcohol at all. It's very harmful to your liver and we strongly recommend that you avoid doing anything that can injure or hurt your new liver. If you do drink alcohol and your liver fails, you will not be eligible for a second transplant. So we just want to keep in mind if you have any questions about that, please let us know. Also the substance abuse and nicotine use, the health system at KU obviously does not approve of any illegal substances and it's very important that you do not use nicotine after your transplant. Side effects of nicotine, you have an increased risk for blood clot formation, it can cause a narrowing of your blood vessels, and it can increase the possibility of complications as well cancer pre- and post-transplant. So it's very important that you don't use any nicotine containing products.

Megan: On the next page, insurance changes. If you are notified or you find out that your insurance is going to change, it's important that you inform your financial coordinator, or you can let your post-transplant coordinator know, and they can get you in contact with your financial coordinator. If your insurance changes, the best way we can help you is if you let us know right away, because we need to make sure that your medications, your immunosuppression medications, that you will be on for life, that those remain covered and affordable for you. So again, if you are having any troubles paying for your insurance, it's vital that you contact us or your financial coordinator immediately so that we make sure that your medication coverage is not interrupted.

Megan: All right. Onto activity. So we want you to continue to increase your activity every day. While you've been in the hospital, you've worked with physical therapy and occupational therapy and have been up and walking pretty much since the day of, or the day after your transplant. It is critical to gain back your strength and to prevent complications like pneumonia and blood clots, that you continue to stay active. So we just ask that you start slowly with walking and increase that amount of walking every day once you're home. The goal is to gain, again, your full strength back. We do ask that you avoid strenuous activity. This includes any sexual intercourse, stretching, bending excessively for a full 6 weeks after transplant, because of your abdominal incision and the depth of what the surgeons cut through to do your transplant it's very important for your healing that you take it easy with any kind of physical movement, as far as bending and that kind of thing. Walking is safe, there's nothing that will hurt with walking, but just excessive bending and any strenuous activities we want you to avoid for those first 6 weeks.

Megan: Initially, we don't want you to lift any more than 10 pounds after you've discharged home. So that's about a gallon of milk or a very small bag of groceries. If you need anything else lifted make sure that your caregiver support is there and and can pick that up for you. Your surgery transplant team, the nurse practitioner that meets with you once you've discharged, will let you know when it is safe to lift more, but to start out with don't lift more than the 10 pounds. Once you've been cleared by your doctor, you can add strength. So the nurse practitioner or the physician or the transplant surgeon will let you know when you can lift more.

Megan: You will discharge from the hospital with your staples in place. They're routinely removed in the outpatient clinic. That doesn't require any kind of pain medications or anything. You will have scar tissue that's formed, so you may feel a mild pinching when they remove the staples. And the time that they remove the staples will depend on your rate of healing, usually it's within a few weeks after discharge. You may shower with your staples in place if you didn't already shower in the hospital, it's safe for you to let soap and water run over your incision, just don't scrub that area and make sure that the incision dries completely. So once you're out of the shower, just make sure you pat that incision area dry with a towel.

Megan: Also, we want to make sure that while you've got those staples in place, that you don't submerge the incision under water. So no bath tubs, hot tubs, whirlpools, or swimming pools until those staples have been removed, and the incision is completely healed. We also ask that you don't drive until you've been cleared by the surgery transplant team, and you have to no longer be taking any kind of narcotic pain medications.

Megan: So as a reminder, the best way to protect yourself from getting sick is to wash your hands. Infection is the most common complication after transplant, and the best way to protect yourself is to wash your hands frequently, as well as your family and any visitors. We also ask that you don't have any contact with people that you know are sick. So again, your newly immunosuppressed, once you've been discharged, we want you to be sure that you don't have any contact with any people that you know are sick. So it's very important that while you're resting and healing at home, that everyone is healthy.

Megan: We will expect you to get vaccinations, regular vaccinations, once you have been transplanted. Your hepatologist will follow-up with you regarding your vaccinations. So we want you to stay up to date with your flu, you'll receive that every year, your pneumonia vaccine is every 5 years, and your tetanus vaccine is every 10 years. There is also the shingles vaccine, if you did not get it prior to transplant, please talk to your hepatologist about getting it within a certain amount of time after you've been transplanted. We do also ask that you avoid contact with children, so infants who have received live vaccines in the past 2 weeks, when around them, do not change their soiled diapers if it's been within 2 weeks of them having received live vaccines. There is a small chance that the vaccine could be passed on through their bowel movement, through their stool, and we want to make sure that if you had a cut on your hand or something, that did not get on your hand and cause any kind of transmission to you.

Megan: Additionally, if you are pregnant, this is obviously for women of childbearing age only, it's very important, conceiving a child while on immunosuppression can cause serious birth defects. So should you wish to conceive a child, your medications will need to be adjusted to assure that you are not taking those that might be harmful to you. You will need to contact your nurse coordinator if you plan to become pregnant or immediately notify them if you have an unplanned pregnancy. And this would have been discussed with you prior to transplant, but we do have a form that we will give you as a reminder.

Megan: Okay. On the next page, we discussed pets after transplant. Because you're going to be immunosuppressed, so your natural immune system is lowered to protect that liver, we want you to make sure that there are some simple tips if you do have animals to follow, to reduce your chance of getting sick. So if you have a cat, I know you've probably been told already, you cannot change the litter box, someone else has to change the litter box. The litter box needs to be kept clean and changed regularly, and it should not be placed in a kitchen, a dining room or any area where food is prepared and eaten. So again, you cannot change any litter boxes. If you have dogs, this is fine, just make sure that they don't lick you in the face or anywhere near any of your mucus membranes, those are your eyes, your nose, or your mouth, we don't want to risk you getting a bacterial infection from that.

Megan: So again, it's completely fine to have pets, we just want you to take these extra precautions. And with birds, any bird cage linings should be cleaned daily, but not by you, someone else needs to clean the tray linings, and it's very important that you do not come in contact with those bird droppings or breathe any of them in. So again, that lining would need to be changed by someone else. Also just make sure you always wash your hands with running water and soap, after any contact with animals. And same for your caregiver, if they clean the litter box, anything, touch their food, or any of their toys after you've played with them, we want to make sure that you wash your hands with soap and water, or at the very least, hand sanitizer, and make sure that it dries, that you are cleaning your hands and rubbing them and until it has completely dried. Washing your hands is going to prevent the spread of infection, germs that could make you sick.

Megan: The next thing I want to talk about is sun exposure. One of our medications, our most common immunosuppressant that we prescribe, Prograf, there is an increased skin cancer risk, 5 fold, for our patients who take it. So your skin may also be more sensitive to the sun because of these immunosuppression meds, because of the Prograf. Your liver doctor will recommend that you see your primary care doctor or a dermatologist for annual skin cancer screenings, as well as it is very important that you take precautions when you're out in the sun. Absolutely no sunbathing or tanning, it's too high risk for skin cancer, wearing hats, wearing SPF 30 or higher lotions are the best they don't wash off as easily as the sprays, and if you're going to be out for any amount of time, we recommend that you cover as much skin up as possible.

Megan: The last thing I'm going to discuss are some common complications after transplant, or not common necessarily, but complications after transplant such as blood clots. You've probably heard that you can get blood clots from lack of movement after surgery, and that's why we have you up moving, that's why we give you preventative medication to prevent blood clots while you're in the hospital, but you can also develop blood clots in your liver. You can develop a hepatic artery thrombosis as well as a portal vein thrombosis. The hepatic artery thrombosis is the more serious of the 2, but it is also the more rare, it can require additional surgery or possible retransplantation, but again, it is more rare. Portal vein thrombosis is able to be medically managed. So if you have any questions about these, we can discuss it further with your physician.

Megan: Another complication after transplant is a bile duct stricture, which is a narrowing of the bile duct, or a bile duct to leak. Your bile ducts are very important, it's important that the flow of bile get through your liver and it can really affect your ability to heal after transplant. So if your labs reflected that you may have a stricture or any kind of leak, we would see that reflected in some of your liver labs, and then we would go ahead and do either an ultrasound or an ERCP, which is similar to an EGD, or possibly a drain to fix the leak. These are all ways that are fairly simple, but we do want to let you know that these narrowings can occur, they can cause different symptoms such as abdominal pain, but we typically would see a rise in some of your liver labs and we would order additional testing to further investigate.

Megan: A stricture or a leak is also something that's fairly easy for the transplant team to fix, it will not necessarily require another transplant, but we do talk about them because they do happen occasionally. Again, infection is the most common complication after transplant, and it's important that to prevent rejection, that we also try to fight off those infections. So make sure that you use caution and avoid people who have active infections or viruses, especially immediately after transplant when you are newly immunosuppressed.

Megan: The last thing I'm going to talk about is rejection. I just want to make sure that you know that it's very important to get your labs when your team asks. Your lab trends are vital for us to catch rejection early. The first sign something might be wrong with your transplants will show in your lab results, and this could be an increase in your liver function tests. That's why we monitor your labs very closely. Rejection is most common in the first year after transplant, but it can occur at any time. Although with early diagnosis and treatment, rejection can be controlled in more than 95% of the cases. So we want you to feel confident that as long as you're getting your labs, if you are ever told by your transplant coordinator or your physician, that you are experiencing rejection, and we need you to come in for treatment, we want you to know that as long as it's caught early, we'll be able to treat it. We'll, 95% of the time we can treat it completely.

Megan: We will, if we do suspect a liver rejection, you may be asked to come in to have a liver biopsy done. If you have not had a liver biopsy, that is where a needle is inserted into your liver, and a small amount of cells are obtained and looked at under a microscope. You may be expected then to stay in the hospital for 3 to 4 days where you will receive treatment for the rejection, and it depends on the level of rejection, depending on how long you'll need to stay. But again, you can feel confident that as long as we catch it early and you're getting your labs like we ask, it's not anything that you need to worry about, we should be able to treat it very successfully.

Megan: So in conclusion, I just want you to know the foremost important points to remember. We want you to take your medication exactly as prescribed to keep your organs healthy and to prevent rejection. Don't take your immunosuppression, so your Prograf, your Myfortic, any of that prior to your blood draw. So on the days you have your labs drawn, make sure that you don't take your medications until after your labs have been drawn. Always call us before you take any new medications, and that includes herbal medications, as well as over the counter medications, also never run out of your medications, call if you're unable to fill your meds for any reason, and if financial concerns are stopping you from filling your medications, let us know right away, so we can work on a solution for you.

Megan: Most importantly, I want to congratulate you on your transplant and remind you that you are the most important member of this transplant team. Your decisions will have the greatest impact on how well your transplant does or does not work. We want to make sure that you take your medications, come to clinic, get your labs as directed, and we expect that you should live a long and healthy life. Please take care of your transplant because it is a rare and precious gift. Thank you.