Kidney Transplant Recovery and Follow-Up

Mandy Riester: Hello, congratulations on your new transplant. My name is Mandy, and I work as the inpatient kidney transplant coordinator. Thank you for joining me to review transplant teaching, which will help you prepare for discharging with your new kidney or kidney-pancreas transplant. If you have your transplant binder handy, please open it. The first page is the table of contents. This tells you what is included in your transplant binder. There's a summary listed on this slide. On the next page, you should find a list of the Center for Transplant kidney staff. On the next page after that, you'll find pictures of all of our providers. If you turn that page, we've given you a spot where you can keep business cards from the staff that you see while you're hospitalized. This is merely convenience. You don't have to use the business card sheet if you don't want to.

Mandy Riester: Moving on, behind the discharge tab is where we will begin teaching. This page is what I call your at a glance page. This has most of the information that you need for clinic. We try to keep you with one provider and one transplant coordinator going forward after your transplant. I will try to let you know before you discharge who your post nurse coordinator will be and who your provider will be. We try to keep you with the same teams that you have continuity of care after your transplant has been completed. Also on this page, we'll talk about your first clinic appointment. I will give you your first appointment before you discharge from the hospital.

Mandy Riester: It's important that you get here about an hour or 60 minutes before your official appointment start time. And that is so that we can get your labs drawn and resulted in real time during your clinic appointment. Our goal is that you would come in and get your labs drawn and that those labs would then result while you're sitting in the clinic appointment with your provider, and your provider can review those results with you while you're sitting in the room with them. You do not have to be fasting before your labs are drawn. You can eat and drink. I would encourage you to have a little bit of water in your system that will help with your lab draw. The 1 thing we don't want you to do is to take your medications until after your blood is drawn. So you will bring that morning's medications with you and wait until after your blood is drawn to take your medications.

Mandy Riester: When you come to your clinic appointment, please bring your discharge binder that you're using right now. It's a good reference point and it's a good catchall for us to show you things if you have questions during your appointment. Remember you need to bring that morning's medications with you to take after your labs are drawn. Before you discharge from the hospital, the pharmacist will help you fill your pill box for the first time. If you want continued help filling that pill box, you need to bring your pill box and all of your pill bottles to clinic with you and someone will help you fill that pill box until you feel like you can do it on your own.

Mandy Riester: All of your appointments will be in the Center for Transplant. When you come into KU in the front door, you'd come up the escalator and the Center for Transplant is on the first floor. The office will open at 8 a.m., so that's when the providers are here, the phones turn on. We really get things started at 8 a.m. The clinic opens an hour earlier. So if you needed labs, you could come in at 7 a.m., or if you wanted to come a little bit earlier to your appointment, the clinic does open at 7 a.m. Both of those close at 4:30 p.m.

Mandy Riester: If you need to get ahold of us during business hours, if you need to call the clinic, you would call the main clinic number, which is 913-588-3961. So anytime between 8 a.m. and 4:30 p.m., you can call that clinic number. If you have an urgent need after hours, so say 9 p.m. at night, you would need to call the main hospital number, which is 913-588-5000. Of course, if you had chest pain or shortness of breath, we always want you to call 911 so that you can get immediate help coming to you to help you at home. If someone finds you unconscious, they also need to call 911 to get you help immediately.

Mandy Riester: At the bottom of the at a glance page, you will also find that our fax number is listed. This is just for convenience. If you have an outside provider or another pharmacy, for example, that would like to fax us a refill request, that is listed here on that page. We're moving on to the next page.

Mandy Riester: As far as getting ahold of us, you will call the main clinic number between 8 a.m. and 4:30 p.m. if you need to talk to someone. And again, that number is 913-588-3961. We do have an automated message that picks up even when we're open for business. So if you have an urgent need, you'll follow the prompts and leave a message. I would start your message with, "This is urgent. I need someone to call me back as soon as possible." If you have a non-urgent need, for example, I need a refill on my Pepcid next week, you can leave a message and the nurse will call you back before she leaves for the day. That's 1 of the last things the post nurse coordinators do is return all of their messages at the end of the day.

Mandy Riester: If you leave the message, the non-urgent message after 4 p.m., the nurse will call you back the next business day. Say again, it's 9 p.m. at night and you spike a fever. That constitutes an urgent call. So even though we're closed for business, we want to hear from you. So you'll call the main hospital number, which is 913-588-5000, and a page operator will always answer that line. When they answer, you need to tell them I need the kidney coordinator on call or the transplant kidney nurse. They'll ask you for a few more details and then a nurse should call you back within 20 minutes. The nurses rotate through the call schedule, but someone should call you back. If you do not get a phone call back within 20 minutes, call again, they will escalate it until somebody calls you back to help you.

Mandy Riester: As far as your posttransplant follow-up visits, we typically see our new patients on Tuesdays or Fridays in clinic. So how it usually looks if you're doing well, is for example, we may see you every Tuesday for a month, you'll see a provider and get labs drawn on that Tuesday, and then they also may ask you to get labs every Friday for a month. And then as you do better, we decrease the frequency of your clinic visits. We keep a really close eye on you for those first 3 months because that's when the risk of rejection is the highest.

Mandy Riester: If you happen to live outside of a 1 hour radius from KU, we will ask you to stay locally within that 1 hour radius for the first 2 weeks after your discharge. That is so that if something were to happen, you could come to our emergency room and also to spare you from long car trips because it will be very uncomfortable with your new incision to make long car trips multiple times per week. So we need you to make sure you're setting up local lodging for those 2 weeks after your discharge. Also, if you have staples in your incision from your surgery, then we remove those about 3 weeks after your surgery date. We'll just take them out during a clinic visit. They put steri-strips on which will kind of curl up and fall off once they're done and your incision should be healing pretty nicely.

Mandy Riester: Once you hit the 3 month mark, you move from an acute patient to a long term follow-up patient. So the clinic days may change and you'll probably find that we are drastically reducing how many times we're asking you to come in for clinic visit and come in for labs. You will still need to get frequent labs, but it will be less frequent than when you're a brand new transplant patient. As far as your labs go, we already talked about the fact that we don't want you to take the medications until after the labs are drawn. Your most important immunosuppression medication is called tacrolimus or Prograf. Most of you will be on tacrolimus or Prograf, and [inaudible 00:08:35] is another one or cyclosporine. You'll only be on one of those, not all of those.

Mandy Riester: We're testing your level of that medication, the level that's still in your bloodstream after 12 hours. So because we start you on so many new medications, we just say, hold all of those medications until after the blood is drawn. That level, we run them every day around noon in the lab. So a lot of times, the result does not come back until the afternoon after your clinic appointment. So your nurse is going to have to call you with that level and let you know if you need to make any changes to your dose. The rest of your labs hopefully would be back before you left your clinic appointment.

Mandy Riester: As far as postoperative care, a lot of this is pretty standard with any surgery. First of all, we're on the next page of your teaching. We don't want you to take any tub baths. We don't want you sitting in bath water because water can get in that incision if there are any open areas. Showers are completely fine. We don't typically make you cover the incision in the shower. Just let that soapy water just run down your body. Any soap is fine. And then you'll pat dry that incision with a clean towel and move on.

Mandy Riester: You are at risk for hernia because they did cut through most of your abdominal muscles to place that kidney transplant. We don't want you to get a hernia. It just complicates things, and the surgeons oftentimes don't want to go back in to fix that hernia for a while because you'll be at risk for infection. So in order to avoid getting a hernia, we say no driving for 4 weeks after your surgery. We don't want you driving if you're taking the narcotics anyway, because that is a risk for you and you're under the influence of something at that point and that's illegal. We also don't want you to drive because of that risk for hernia.

Mandy Riester: We also don't want you to lift over 10 pounds or a gallon of milk is the equivalent, for 6 weeks after your surgery. No strenuous activity, including sexual activity for 4 weeks after your surgery. Walking's really the most we want you to do. You're going to need to listen to your body and if you're getting fatigued quickly, take a rest, but try to stay out of bed during most of the days after your surgery and be walking around frequently. This'll be beneficial in many areas for you.

Mandy Riester: We also don't want you to try to stretch your bladder. So a lot of times when you're on dialysis, your bladder doesn't have to hold urine because you're not making urine or you're making very little urine. Now that you're making urine because your kidney transplant is working, you'll notice that your bladder is bugging you to go to the bathroom a lot more often than you had been experiencing before transplant. The bladder will learn how to hold a normal amount of urine. It takes about 2 weeks. However, we don't want you to try and help your bladder by holding your urine. When you feel like you need to go, go to the bathroom, and eventually, things will get better and you won't have to wake up so much at night.

Mandy Riester: Your kidney transplant isn't protected like your native kidneys are with your rib cage, so just be careful about that area where the transplant is. We don't want you bumping into anything or running into anything with that new incision there. And then lastly, you'll always be immunosuppressed because you'll always be taking the medications by mouth that are telling your immune system to be quiet. But for the first month, you're extremely immunosuppressed because we give you IV immunosuppression while you're in the operating room and subsequent days after that. So that medication can sometimes stay in your body for a month after your surgery, so it's very important that you try not to get sick in that first month. So we usually recommend that you do not go to any crowded places. So no grocery store, no church for the first month, and we recommend no sick visitors. So nobody with a sore throat, with flu-like symptoms. They need to stay away for at least the first month, if not for longer.

Mandy Riester: Moving onto the next section, talking about medications. So you'll always be taking the immunosuppression medications. As long as you want your kidney to work, you need to take those medications. Your body will never get used to your transplant. It will always build a response against the transplant if you don't have the medications on board. We want you to never run out of those medications. So if you notice that maybe you were supposed to get a shipment and now it's delayed, you need to call us as soon as you realize, because we're going to make a backup plan with you to make sure you never go without those medications. So just keep us in the loop. Let us know how we can help you so that you don't have to miss any meds. You need to let us know before you start any new medications. So if you go to see your primary care physician for a cough and they prescribed you an antibiotic, please call our office or have that physician call our office to make sure that that medication isn't going to hurt your kidney or kidney-pancreas transplant.

Mandy Riester: We never want you to take anything that we call an NSAID or nonsteroidal anti-inflammatory drug. So those would be like Motrin, Advil, Aleve, Naproxen. Those are no-nos. That's never again. Only Tylenol for over-the-counter pain relief. The 1 exception would be if someone has told you you need to take a baby aspirin or a full aspirin every day for your heart. That is okay, but we don't want you taking an aspirin for like a headache or anything like that. As far as avoiding getting sick, keeping your hands clean is your best bet. So anytime you use the bathroom, or if you're getting ready to eat, you need to wash your hands or use hand sanitizer. This'll help prevent you from getting sick or drastically decrease the risk of you getting sick. Anybody touching your food or your pills needs to have clean hands as well.

Mandy Riester: We also like for you to be up to date on vaccines, like the flu shot, pneumonia shot, and tetanus shot. This will give you extra protection against those things because you are at risk now with your immunocompromised state. We don't want you to ever get a live vaccine again. So that would be like the shingles vaccine or yellow fever if you're going to travel outside of America, or the flu mist, which goes up the nose. We don't want you to get those. Additionally, if you're around any infants, so babies that get a live vaccine like the MMR or measles, mumps, rubella, we don't want you changing those babies' diapers for 2 to 4 weeks after they get the vaccine. They can shed some of that through their bodily fluids and you could pick that up. So please avoid changing diapers for newly vaccinated babies that get live vaccines.

Mandy Riester: If you have pets at home, you need to be very careful. We don't want you to ever change any kitty litter boxes or bird cages. Those animals, if you clean up after them, that can give you a pretty severe lung infection. So we want you to avoid that. Someone else in your household needs to help you with those cleanup jobs. It's all right if you have animals at home or if you go to visit friends that have dogs or cats, you can pet them. That is okay. We don't want that pet to lick your face or scratch your skin because that could introduce bacteria to you and be harmful for you. If it happens, wash with soap and water and keep an eye on it. But we would hope that you would try to prevent that from happening.

Mandy Riester: We would like for you to establish care with a primary care physician if you haven't already. This will be helpful because we want you to have someone that you can call if you have a non-kidney related illness. So if you have a cough or some chronic back pain, you need to talk to your primary care physician about that. The transplant team will not be addressing that for you. It's also good to have a primary care physician because you need to make sure you're getting your yearly physicals. Because of the immunosuppression medications, you are at a slight increase risk of cancer. So we want to make sure that your primary care physician is keeping you on track for your colonoscopy, prostate exam, mammograms, pap smears, and scheduling those for you when you're due for them. You don't have to get them more often unless they've found something suspicious. You just have to make sure that you're getting them on schedule and you're being diligent about that.

Mandy Riester: The most common cancer after transplant is skin cancer. We do recommend that you protect yourself from the sun, and we do recommend that you establish care with a dermatologist or a skin doctor to do a head to toe check at least once a year and make sure they're watching for any new skin cancer developments. If you're having more than 3 precancerous spots or cancerous spots removed, you need to call your transplant team. If you have any changes to insurance or you notice that your copays are becoming higher and higher and it's harder for you to pay for your medications, you need to call your team. You need to let us know and we'll, again, make a backup plan to make sure you don't have to go without the medications and try and work out a solution with you to get coverage for those medications.

Mandy Riester: Lastly, we're going to talk about rejection. So once your creatinine comes down as low as it's going to go, everyone has a baseline range and it's a custom for each person. So for example, maybe your creatinine runs between 1.3 and 1.5. Every time you get labs, we'd like for your creatinine to stay in that range. If your creatinine starts to rise, your nurse coordinator is going to call you and ask how you're doing. They'll probably ask if you're drinking enough water, if you've had diarrhea and could be getting dehydrated through the diarrhea, or if you started any new medications or forgotten your medications, forgotten to take your medications. You may say, "I feel fine. I'm doing everything I'm supposed to do." Your nurse will probably say, "Drink a lot of water. Get labs again in a couple of days."

Mandy Riester: If your creatinine is still elevated above that baseline range, your nurse may add some extra tests. We can do extra blood tests to check your kidney. We may do an ultrasound to look at how mechanically your kidney is working. The last resort would be to do a kidney biopsy. How we do the biopsies here at KU is that you would need to come in and stay overnight. They'd get you set up in a department called interventional radiology. They make you kind of sleepy, numb the area around your kidney, and then they'll either look at the kidney with an ultrasound machine or a CAT scan machine. Once they see that kidney with those machines, they'll take some cells out with a long needle. You have to lay completely flat for 6 hours after the procedure because there is a risk for bleeding.

Mandy Riester: Usually, the next morning, the kidney doctor will come see you and tell you what they think is going on in your kidney transplant. Sometimes it's nothing, sometimes it's inflammation that they can treat with IV steroids, and sometimes it's rejection. There are 2 different types of rejection. So if they saw 1 of those or a mixture of those in your kidney, they would probably ask you to stay in the hospital anywhere between 5 to 10 days to get treatment for that. The good news is we have great ways to treat rejection. So just because they see rejection doesn't mean that you have to go back on dialysis or that your kidney transplant is completely gone. We want to make sure we can save as much as we can of that kidney transplant.

Mandy Riester: Typically, we see rejection first in your lab work. So you may feel fine and we might notice that something's going on. However, you can have physical signs and symptoms of rejection. Those would be fever, nausea, vomiting, your kidney would feel like a hot rock or be painful and warm under your skin, you'd have little to no urine output, and you'd be swelling. So if you notice that you're developing some of those symptoms, you need to let your team know as soon as possible.

Mandy Riester: You'll always have, even if it's just a small risk, but you'll have a risk of rejection forever. It gets smaller the further you get from your surgery date, but it is always there. The only things you can do to help control that are to take your medications on time, get your labs on time, and stay in communication with your transplant team. Even if you do everything right, there is still a risk, but it will be a much lower risk than if you forget your medications frequently or don't get your labs when we ask you to. Those are very important to do so that we can help take care of that kidney transplant.

Mandy Riester: Moving on to the next page, we're going to have you keep track of your vital signs when you discharge from the hospital. This'll help us know how well the kidney transplant is doing when we're not getting labs every day. So if you turn to the next page, we outlined some of the things that we're going to have you look at, and I'll tell you towards the end of this, where to keep track of these vital signs. These are all things that we would want you to call us about if they were off, even if it was after hours. So the first would be fever. So if you notice that your temperature is above 100.5, we want you to call us. In the first 2 weeks after transplant, we would like you to take a temperature every day. It's important that you try to take it around the same time because your temperature does vary over 24 hours. So if every morning you wake up and take it, that's perfect. Again, if it's above 100.5, you need to call us.

Mandy Riester: We want you to keep track of your blood pressure for the first 2 weeks. So you'll take a sitting and a standing blood pressure twice a day. If your blood pressure sitting is above 160/90, you need to call the transplant team. If when you stand your blood pressure drops less than 90/60, you notice you're dizzy or lightheaded, you need to call your transplant team. We would like for you to take a weight every morning after you urinate for the first time. That's what we call a good dry weight. If you've gained 3 pounds since yesterday, you need to call the team. You don't gain muscle or fat that fast, that's fluid, and a good working kidney should be pulling all your extra fluid off. So let us know if you notice you're swelling, your weight's going up quickly. We need to know about that.

Mandy Riester: We also will want you to keep track of your urine output for the first 2 weeks. I will ask the nurse to give you a urinal or a hat to keep track of your urine when you leave the hospital. You don't have to keep the urine, we just want a running total over 24 hours of how much you're putting out. So every time you go, see how much it is, write it down, dump it, and then write the 24 hour total. You'll add up all those numbers and write that total on your paper and bring that back to your appointment with you. If your urine output dips below a liter or 1,000 milliliters, we need a phone call. A good working kidney should make more than a liter of urine per day.

Mandy Riester: We'll also ask you to call us if you notice that you have urinary tract infection symptoms. So if you notice that you're going to the bathroom frequently, it burns when you go to the bathroom, it has a foul smell, you have a fever, you need to call us. We definitely want to catch that infection before it turns into a kidney infection. So the sooner we can treat it, the better off you'll be.

Mandy Riester: Also, if you have any GI symptoms, so any kind of stomach bug, your stomach's upset, you probably need to notify the team. If you vomit even once, we want to know about it. If you have more than 2 watery stools, not just loose, but watery, you're getting very dry very quickly and your kidney is going to have a hard time catching up with your fluid balance. So you need to let the team know if you're having some sort of illness where you're vomiting or having watery stools. If your stomach just doesn't feel right and you don't think your medications are going to stay down, you also need to call us. We definitely don't want you to throw up the medications. So let us know if we can help you in any way before you take your medications and throw them up. Again, if you're having any chest pain or shortness of breath, we always want you to call 911. That constitutes an emergency. So you need to call emergency services for those things.

Mandy Riester: Your incision normal drainage, you can have normal drainage from your incision. We would expect clear drainage with a really light yellow tinge or brown drainage, which is old blood or a mixture, which can look pink. Those are all okay. If you notice pus coming from your incision or bright red blood, you need to head to the hospital. You can call the team. That's okay, but expect that we're going to ask you to be seen either in clinic or in the emergency department. If your incision looks red, it looks angry, it's warm to the touch, you have a fever, your incision's probably infected. You also need to prepare to come into the hospital to be seen for you'll probably need IV antibiotics. So let us know if you notice that going on with your incision as well.

Mandy Riester: We talked about weight gain. Anything more than 3 pounds a day, we need a phone call. Your pain should get better each day you get further from your surgery. So if you notice that you've been doing great and all of a sudden, your pain has gotten out of control, the pain pills are not helping it, something's wrong and you need to let your team know that your pain is out of control and you're very uncomfortable. Lastly, if you forget your medications or you throw them up, you need to call the team as soon as you realize, and we'll make a plan with you to get caught up on your medications.

Mandy Riester: The next page is going to talk to you about stent information. So when the transplant surgeon did your surgery, they attached your kidney, your donor's kidney and your donor's ureter to your bladder. That ureter is a pretty fragile and friable connection. So in order to make sure it heals up nicely, the surgeon puts a ureteral stent into the ureter at the time of the transplant surgery. This is what the stent looks like. It's a very flexible straw-like structure, and it is helping your ureter heal, and hopefully, preventing any urine from leaking in that urine system.

Mandy Riester: We don't leave the stent in forever because it can get infected. And so about 6 to 8 weeks after your transplant surgery, we will ask urology to remove this stent in their office. I will make an appointment for you and let you know about that appointment, hopefully, before you’re discharged, but sometimes we'll have to catch you in clinic and let you know when they're going to remove that. When you show up for the stent removal, typically, the urologist will not put you to sleep. You will be awake for the procedure, and you'll come in, they will put some lidocaine jelly into your urethra and that'll help numb things up. Then the urologist will go into your urethra with a stethoscope and pull that stent out. Typically, the procedure is over pretty quickly. It's less than 5 minutes total time. However, it can be uncomfortable, but it is over pretty quickly. The first time you urinate after that procedure has been done, it may burn or sting a little bit. That'll get better as the day goes on. So when you go to bed that night, you shouldn't have any issues going to the bathroom.

Mandy Riester: On the next page, you'll notice that there is a list of over-the-counter medications that are appropriate for you and not appropriate for you. The transplant pharmacist will go over this with you as well, but it is in your binder in case you lose track of the papers that the transplant pharmacist gives you. If you look further in your book, the next page is what we call general health guidelines. So this includes information covering various topics like CMV or cytomegalovirus, skin cancer, dental care, healthy eating and diet, exercise, and other available resources. We won't cover that now because we've already covered the most important information, but that is available in your binder. And if you have questions about it, you can ask your post-transplant team.

Mandy Riester: At the back of your book, the second to last tab says your vital sign log. That is where you'll keep track of your vital signs after you're discharged from the hospital. There are spaces for all the things that we've already talked about, for your temperature, your blood pressure sitting and standing twice a day, your weight, your urine output, and then for those that it's appropriate for, their space to keep track of your drain output or surgical drain if you discharge with a surgical drain, and to track of your blood sugars, which we'll want you to take. If you are diabetic, we'll want you to take your blood sugars 4 times a day. If you've had a kidney-pancreas transplant, typically we ask you to check your blood sugars twice a day, when you wake up and when you go to bed.

Mandy Riester: There is space on that sheet for your vital sign measuring. The doctors will want to see the results of these. The doctors will want to see your spreadsheets, so you need to bring those back to clinic with you. So you can either leave them in your binder or reattach them to your binder if you've taken them out and make sure you bring them back and that you're keeping track of all of your vital signs when you go home. Again, if any of those vital signs are different from what we want, you need to call the team, even if it's after hours. This would constitute an urgent need. If your blood pressure was elevated above 160/90, or if you're gaining weight quickly more than 3 pounds a day, those all constitute an after hours phone call.

Mandy Riester: Again, after you've completed watching this video, the inpatient kidney coordinator will call you to talk about your education and if you have any questions about the video. Also, the inpatient kidney coordinator will make sure that they stay in touch with you and that you know about your first follow-up visit and what your next steps are after your transplant education. Thank you so much. And again, congratulations.