A KIDNEY-ONC mailing list member, Donald Noel, polled the list and compiled a set of tips to be used as a guide for those approaching a nephrectomy. These tips are largely anecdotal and collected from people who have been through a nephrectomy. They are also general – things will vary some according to the kind of surgery you had, especially open surgery versus laparoscopic surgery. Not all these things will apply to every patient. Some may actually contradict what your doctor has told you. Discuss any questions with your doctor. Listmember PJ Boyle paraphrased these submissions, and Steve Dunn did considerable additional editing, modifications, and additions.
The First Thing You Should Know About Nephrectomy
Although all surgery has risks and nephrectomy is major surgery, almost everyone makes it through alive and without any major damage. You can expect to return to normal life after you recover from the surgery. For most people living with one kidney is exactly like living with two kidneys!
Bring a Caregiver
List members are almost unanimous in recognizing the value of having a caregiver/advocate stay with you 24 hours a day while hospitalized. Your doctor or the hospital may not offer or suggest this, but almost all hospitals will accommodate this request by providing a cot or recliner in the room. Especially immediately post-surgery, you will be sedated and it is of great benefit to have someone there to ask questions for you, make sure you get things you want and need, help prevent medication errors, and keep an eye on things. Even the best nurses can make an error by being in the wrong room with a medication. You will find the nurses to be incredibly busy, especially with the large paperwork burden they have. A caregiver looking after just you is a tremendous help.
The latest medical theories hold that pain slows the healing process. Many advances have been made in managing pain. You should take the approach that great discomfort is not part of the nephrectomy process, and ask for help if you experience pain.
Many list members recommend an epidural in addition to general anesthesia. This involves a line placed in your back to pump in a pain medication and deaden the lower half of your body. It is sometimes referred to as a “saddle block”. With this in place during surgery and for a couple of days after, no pain is experienced at the surgery site, and in theory, healing is promoted. Also, less general anesthetic may be used during the operation while this is in place, which will make you less prone to post-surgery nausea (a common anesthesia reaction). Some people believe that under general anesthesia, though you are unaware of pain, the body is still feeling it, and will cause the adrenal gland to secrete. The epidural prevents this and so promotes healing. Epidurals, as opposed to IV morphine, do not slow bowel function, in fact, many journal articles document that epidurals can speed the return of bowel function, resulting in a shorter hospital stay. You should discuss the pros and cons of an epidural with your urologist in advance of your surgery date.
Modern Anti-Nausea Drugs
A common side effect of general anesthesia is nausea and vomiting. This is particularly distressing to the patient after major abdominal surgery. Several modern drugs such as Zofran, Kytril, and Anzemet can prevent this. Your anesthesiologist can add one of these drugs to the “cocktail” towards the end of your surgery and eliminate nausea after you wake up. Request this before your surgery. These drugs prevent nausea by blocking a specific type of seratonin receptor in the nervous system and are more effective than older drugs such as compazine, but they are also relatively costly so your doctors may not volunteer it unless you bring it up.
Most hospitals provide a machine that allows the patient to adjust their dosage of pain medication. It is a simple principle, if you are feeling discomfort, you press a button to signal the machine. The machine takes your input and adjusts the frequency that it adds pain medication to your IV. No one knows what you are feeling but you, and this feedback process avoids the need to describe your pain to a nurse or to characterize it by level. Since the machine also compiles statistics on the frequency that you are pressing the button, it allows the staff to better assess the proper time to wean you from the IV pain meds and switch to oral. A couple of notes on this device: First, you cannot give yourself an overdose by pressing the button too much. The button is not linked in such a way that you get medicine each time you press. You are merely providing feedback to the machine as to the effectiveness of the current dosage level, and the computer will set a new level accordingly, but within safe limits. Second, it is not uncommon for loved ones or caregivers to “push the button for you” while you are asleep. This is well-intentioned as they may erroneously believe you will get insufficient dosage while sleeping. This extra feedback will cause you to be more sedated, and for a longer period, than is necessary, slowing your recovery. You should discuss this prior to your surgery with people you expect will be visiting during your early recovery period.
Oral Pain Medications
In the hospital and during your recovery at home, you will have a prescription for pain medications. This will be a narcotic such as Lortab, Percoset, or Vicodin. You will have a schedule of dosages, which may require you to wake up to take a dose during your sleep time. It is recommended that you do this as it will keep your dosages properly spaced and keep your medication level more even. Be aware that these medications will also have an impact on the bowel, and may cause constipation. Discuss with your doctor what he recommends for you should this occur. Also discuss what program you will be on for weaning you from these drugs (the sooner the better, as long as your pain is under control). If the pain is not under control, don’t be afraid to ask for higher dosage (either while still in the hospital or after returning home). At the hospital they are generally approved to increase your dosage by up to 3 or 4 times without having to seek approval from the doctor.
Consider asking your doctor to prescribe a sleeping pill and something to calm your nerves in case you need it. If he/she puts this in your chart you don’t have to wait until rounds to ask for it. Also, you should warn your caregiver that it is not uncommon for the patient to experience some hallucinations due to these medications. You are not going crazy!
Prior to Surgery
Questions for Your Doctor
Don’t be reluctant to ask your doctor every question you have prior to surgery, no matter how trivial. There is no dumb question, and the doctor has heard them all before. (Where does that sawdust go when they saw through a rib?) Have the surgeon explain the procedure in detail, and have your questions written down in a list so you don’t forget them while talking. This process should be done in advance of your surgery date, although you may not meet your anesthesiologist until the day of surgery and you should ask those specific questions then. Questions such as use of epidural and Zofran should be discussed with both your surgeon and anesthesiologist.
Tumor Preservation and Uses
The tumor that will be removed with your kidney contains important information for you and your doctor. Its size helps determine the stage of your disease, its cell type determines the type of cancer and will help determine the direction of any further treatments, and its grade will give an indication of how aggressive it may be. The tumor will be sent from the operating room to a pathologist who will make these determinations and prepare a report. It is useful to many patients to obtain a copy of this report themselves so they may discuss it with their urologist or oncologist. For more information your pathology report, see our articles on staging and grading as well as our article on RCC Subtypes, which describes the different kinds of renal cell cancer.
Although there is no standard adjuvant therapy to prevent recurrence you may want to investigate clinical trials of adjuvant therapy before your surgery. Some of these trials involve tumor vaccines which use your tumor to produce an individualized vaccine to try to “train” your immune system to destroy any micro metastases left after the surgery. For more information see our article on adjuvant therapy.
You may also want to investigate freezing a sample of your tumor. Some important new diagnostic techniques which could use frozen tumor tissue are on the horizon, and it is also possible that in the future an effective vaccine might be developed which could use frozen tumor tissue (although so far vaccine trials have required fresh tissue). To learn more see, Put Your Tumor On Ice!
Pre-Registration and Testing
You may be asked to come to the hospital several days in advance of your surgery for some routine tests and to pre-register. The registration saves you from having to sit and go over paperwork and insurance questions the day of your surgery (when your mind will be preoccupied). The testing may include routine blood work and a chest x-ray, and possibly an EKG. These are mainly for the surgeon to further evaluate your general health condition and ability to tolerate the surgery, anesthesia, etc. These will be reported back to your urologist, so if you are interested in hearing these results, make arrangements with your doctor to set a time when these would be available.
They will give you a set of instructions on what to do in preparation for your surgery. This will include some physical instructions such as what time to discontinue eating /drinking the night before. By all means follow these instructions to the letter. The importance of this is that your system may react poorly to the anesthesia and having anything in your stomach if you become nauseous during surgery will cause complications. What the instructions will not tell you is how to prepare emotionally for your surgery. Everyone feels nervous. You should try to stay calm and relaxed. Take a hot bath to relax, listen to soft music. Be nice to yourself. Have a meal you enjoy (prior to the time when eating must stop). Your next meal will be hospital food!
Living Will, Legal, and Financial Preparations
These are areas that are often overlooked until they are really needed. Let’s face it, few of us want to discuss these things. If you have not already done so, they require serious consideration prior to your hospitalization for surgery (in fact prior to any hospitalization). The Living Will is important so that your wishes as to the extent of life-prolonging measures extended to you are well understood. These wishes should be discussed with your caregiver and perhaps with other family members. This is not “negative thinking” or pessimism on your part, though some family members may refuse to discuss such eventualities. But a few minutes of conversation in advance can save everyone some agonizing choices later, if you are unable to make such decisions on your own behalf. The hospital may be able to supply you forms to name a medical surrogate (the person making medical decisions for you if you are unable) and other details of the Living Will.
Financially, it is important that someone knows of important upcoming dates (mortgage or other payments due? CD’s or other financial instruments maturing?) and is empowered to take care of them for you should your hospitalization extend beyond your doctor’s original prediction. The rest of the world keeps going during your surgery, though your world may be standing still.
Make sure that your doctor is aware of ALL medications and nutritional supplements that you are routinely taking prior to your surgery. The doctor may adjust your dosage or ask you to stop taking certain medications or supplements due to their potential interaction with anesthesia or their effect on the clotting ability of your blood. Some over-the-counters such as aspirin and St. John’s Wart reduce this clotting ability and are contra-indicated prior to surgery.
What to Bring to the Hospital
When considering what to bring to the hospital, there are a couple of things to keep in mind. First, you will be there several days. If you live not too far away and your caregiver will be returning to your home during your visit, they will be able to augment what you have brought as you discover what you “need”. Otherwise, consider that you will be there several days and bring the things that are important to your comfort and sanity. Also keep in mind security. You will not be in a condition to “watch your stuff” 24 hours a day, so don’t bring a lot of cash, valuables, or anything you consider irreplaceable.
Do’s (In no particular order)
- Books and Magazines
- Small photos of people who are special to you
- Comfortable shoes or slippers (bear in mind you won’t be able to tie your own shoes at first)
- A favorite comfy robe
- Basic Toiletries
- Tic-Tac type candies
- A music source such a discman with headphones and CDs
- Some writing supplies (pen and paper)
- Cleaning tissues such as “Wet-Ones”
- A loose-fitting outfit for your discharge
- A bull-horn to call the nurse (no actually this one is just a joke!)
Cough / Sneeze Aid
Some doctors will give some “training” prior to surgery on the use of a pillow to help you when you cough or sneeze post-surgery. The basic technique is that when you feel the urge you press a pillow tightly against your incision area as an aid to your disrupted and healing abdominal muscles. Though there are no known cases of a sneeze spraying staples all over the room and exposing your insides, the sensation that this is about to happen as you prepare to sneeze is unmistakable. Ask your doctor about this technique if he/she fails to bring it up. A related topic applies to a good belly laugh. This may be where the term “side-splitting joke” originated.
Doc-Talk During Surgery
Some believe that it is important to ask the doctor to talk to you during surgery, telling you that things are going fine. Surprisingly, most surgeons aren’t amazed at this request. There is a book “Prepare for Surgery, Heal Faster” by Peggy Huddleston that includes a relaxation tape and a list of sentences your surgeon and anesthesiologist can use during your surgery. In some hospitals they provide free 1 hour classes to patients based on the book and tapes. If you pursue this approach, it would be useful to begin using the technique a week or two before the operation.
Some hospitals allow you to bring CD player and headphones to let you listen to music when you’re under, which is supposed to help with pain management. Heavy metal is not recommended, but to each his own. Check with your doctor or the hospital before planning to do this.
After Surgery – Hospital Recovery
Upon awakening from general anesthesia, there is the feeling that you have only been asleep for a matter of moments. Unlike normal sleep you have no sensation of the passage of time under anesthesia. You will probably awaken in a recovery room with a flurry of activity around you. As this is not where you went to sleep, there may be some disorientation. The doctors and nurses will be talking to you, indicating that you are fine and urging you to continue awakening.
You can expect to be wired up to monitors and have IV’s and a urinary catheter still in place. You also may have a drain tube (or two) from your chest. Most patients are breathing on their own again by the time they wake up and so you very likely will not need to be on a ventilator.
You may also have pressurized cuffs (compression sleeves) on your lower legs. These help the circulation and prevent clotting in the veins of your legs (which can lead to serious complications). These cuffs will periodically pressure up as you lay in bed. Depending on your condition these may be removed within 24 hours or be kept in place for several days. Have your caregiver learn to unhook and hook these up to allow you to get up and walk. Later when the cuffs are no longer used, walking and moving your legs in bed will help prevent clots.
You may have a naso-gastric (NG) tube in your nose. This tube drains the stomach contents. It may be removed before you awaken or they may leave it in place for as long as several days. If the NG tube is left in place, the nurses will occasionally check it to make sure it is draining properly and hasn’t slipped out of place. Your caregiver should also try to get an understanding of how to monitor this tube (ask the nurse) and keep an eye on it for you. This tube can induce a sore throat feeling after a while (see ice chips below). If the feeling is severe, some doctors will do an x-ray to make sure there is no obstruction.
Typically your intake of fluids will be limited immediately after surgery as the anesthesia’s lingering effects could still produce nausea. They will allow you virtually unlimited ice chips, however. These you will find to be a great relief for the dry feeling in your mouth and for your thirst. They may also allow tic-tac type candies, but you should ask the nurses before eating any of these.
Particularly if you have had “open surgery” you may find it difficult to execute the rolling and twisting motions you take for granted in getting into and out of bed. The motorized hospital bed is a great help here as you can motor yourself all the way to a sitting position before swinging your legs over the side to get up. Initially, you will probably need help to get out of bed. The good news is walking is much easier than getting out of bed!
As soon as they let you, walk. You may not yet feel like it. However walking is one of the best things you can do to aid all your systems’ recovery to “normal”. Walk as much as you can tolerate, and do it several times a day. This will help build strength and speed your recovery in the hospital and at home. It also helps relieve the boredom as you can keep up with what else is going on on your floor. Don’t be discouraged if you can’t go very far at first – you’ll experience amazing an improvement between each day and the next.
Don’t limit yourself to walking with a nurse once or twice a day. Do at least twice as much, even if the walk is short. You will feel better much faster and it makes going home much easier. You and your caregiver should learn how to disconnect the power to the IV pump you may have in place so you can roll it with you while you walk. These switch to battery power when unplugged (If for some reason you aren’t allowed to completely free yourself walking in place next to your bed may still be possible).
Depending upon the status of your lungs post surgery, you can probably expect to receive pulmonary therapy. The idea is to help your lungs recover from anesthesia and keep them clear of mucus and secretions that can be a home to pneumonia. You may be given a device called an “incentive spirometer” to blow into on some periodic basis. Think of this as exercises for your lungs to keep their capacity up. A respiratory therapist may even come in and “thump” on your ribs while rolling you around the bed (not the most welcome feeling). They are trying to dislodge mucus and have you cough it up. Take all of these treatments seriously, as pneumonia is a fairly common occurrence after major surgery and will significantly prolong your recovery.
Some patients report elevated blood pressure following their nephrectomy. If this occurs you will probably be given meds to lower it. After recovery many patients report a decline in blood pressure compared to pre-neph levels. Sometimes kidney tumors produce substances which raise the blood pressure. After the tumor is removed the blood pressure goes down.
Anesthesia impacts bladder and bowel function as these systems are more sensitive to the drugs. As a consequence, these may take some added time to “wake up”. How long you are catheterized will depend on your own system. You will probably start solid foods within a day or two after surgery.
Key Records: Your Pathology and Operative Reports
Your pathology report should probably be available before you leave the hospital, and if not then shortly afterwards. The path report will give you your stage and sub-type. Usually your doctor will briefly discuss your pathology report with you before you leave the hospital. If possible, try to get him let you see it during the discussion (it should be in your chart) so you can ask any questions about the technical language while you’ve got him here. In any event, I suggest you ask for a copy of your operative and pathology reports before you leave the hospital. If not then, certainly at the first postoperative visit.
At Home Recovery
You will find sleep to be a major facet of your recovery process. You may start out needing far more sleep than you are accustomed to, including a nice afternoon nap. This is part of the process and allows your body to heal. Listen to your body! You may need assistance at first to get into and out of bed, and once in you may find that your favorite sleeping posture doesn’t feel good anymore. (For example: Laying on the side your incision is on.) You may want to have some extra pillows handy for propping up your legs, tucking under you to keep your staples off the bed, etc.
Your doctor will tell you if there are any dietary restrictions during your recovery or later. In general, if your remaining kidney has full functionality you will not have to limit your diet. Drinking plenty of water is always good advice. Many people take the opportunity of the diagnosis of their disease and their nephrectomy to make some changes to improve the quality of their diet. Adding to the number of fruits and vegetables you eat is always a good thing.
Some patients experience constipation during their recovery. This may in part be due to pain medications they continue to take. There is a recipe for a fruit paste that has been posted on the KIDNEY-ONC mailing list that many patients have found extremely beneficial (if not magical!). See sidebar.
EASY FRUIT PASTE (ends constipation)
Use whatever size container your store offers of these three fruits:
-9 ounces to one pound of dried pitted prunes
-9 ounces to one pound of dried figs (remove any stems)
-Large box of raisins, about one pound
-4 ounces senna leaves or senna tea (check your health food store)
-one cup lemon juice
-one cup brown sugar
Bring a quart of water to boiling; remove from heat; add the senna. Let stand five minutes or more, then strain the leaves out. You will have about 2 1/2 cups of dark tea.
Add the fruit. Boil for five minutes, stirring occasionally. Remove from heat; stir in lemon juice and brown sugar. Let it cool.
Remove any fig stems or prune pits. Run the mix through a food processor, blender, or food mill to create a paste.
Spoon into small containers. Refrigerate one and freeze the rest. (Though it won't freeze hard, it will keep indefinitely this way.)
Take 1 to 2 tablespoons a day, as needed. Good plain or on crackers or bread, on oatmeal, etc.
Review with your doctor any exercise regimen which you practiced pre-neph and he/she will tell you when you can resume. For instance, my doc put on my discharge instructions: NO GOLF FOR 6 WEEKS. Listen to your doc and to your body. When trying something for the first time, use good judgment and practice moderation. Then once you have established a baseline you can add to it. Walking is a great way to rebuild your stamina and strength. Try to walk some each day without overdoing it. You may not be able to do much at first, but even if you can’t go far at once, you will probably be able to take several short walks during the day. In winter you may find the local indoor mall may be a good option – just don’t shop till you drop!
Many patients have jobs or businesses awaiting their return. Make sure you allow yourself time to heal, both physically and emotionally. Some list members have reported returning to their previous activity levels too quickly, with a prolonged recovery as a result. Of course, there are others who kick right back into gear and seemingly never miss a beat. Stress is related to both your body’s ability to heal and also to the efficient operation of your immune system. Major surgery like a nephrectomy knocks the immune system for a loop, so moving too quickly back to a high stress job can compound this effect. “Your mileage may vary”. Everyone is going to react differently to their surgery and recovery, so discuss this topic with your doctor before heading back to your previous pace. And above all listen to your own body once you do start back. If it is telling you it still really does need that afternoon nap, arrange your schedule to fit that in.
The recovery period is one area where laparoscopic surgery can make a major difference, with some patients reporting a return to work within a week or ten days.
You may find travel by car or plane uncomfortable at first due to the jostling. Since there is a void in you where your kidney used to be, other organs can move around a bit more and produce an uncomfortable feeling at first. One solution for this is to wear a support around your midsection to “hold things in”. A nylon web back support belt such as you see the employees wearing at Home Depot works well, and is readily accessible at any sporting goods store that sells weightlifting equipment.
Expect to see your surgeon at least once postoperatively to check your healing. This would be a good time to address any concerns about your recovery and any questions about your staging, sub-type and prognosis. You may also want to discuss whether you should have a consultation with an oncologist and what your follow-up schedule should be. Your doctor may discuss some of these issues with you while you’re still in the hospital. It’s useful to take a written list of your questions and concerns to the appointment.
This CancerGuide Page By PJ Boyle and Steve Dunn. © PJ Boyle and Steve Dunn
Page Created: August 9, 2003, Last Updated: February, 2008