FAQ: Kidney Transplant and Recovery
Please do not hesitate to ask your questions—however trivial they may seem to you. Every step of the way, your Transplant Coordinator will be available by telephone to answer any questions—and there is no such thing as a "silly" or "dumb" question. Please feel free to ask any questions, at any time, for any reason. We are here to help you.
Your Transplant Coordinator is available if you have any questions or concerns, and you may, of course, contact any member of the Kidney Transplant Team at any time with your questions.
The staff at the Kidney Transplant Center will answer all calls between 9 a.m. and 4 p.m., Monday through Friday, except holidays. The Transplant Coordinators will return these calls at their earliest convenience, usually the same day that you call. The Transplant Office number is 610-619-8420. Leave your name and telephone number where you can be reached. Try to be as specific as possible when you leave your message. Your call will be returned during the next business day. If you need to speak to a Transplant Coordinator during weekends, holidays or after hours, ask the answering service to page the Coordinator, who will return your call. If you have call block, please remember to remove it when expecting a call from our staff.
In an emergency: Call 911 immediately.
In the event of a life-threatening emergency, such as chest pain, coma, breathing problems, or bleeding, call 911 and they will take you to the nearest hospital emergency room. You and your family should always ask the physicians in the emergency department to call the Crozer-Keystone Kidney Transplant Center, but DO NOT try to drive to Crozer-Keystone in an emergency. Call 911.
What are the benefits of transplantation?
Transplantation eliminates the need for dialysis and helps patients enjoy a life filled with more freedom, energy and productivity. Although most patients are on dialysis before first being evaluated for transplantation, patients with end-stage renal disease can be referred for transplantation even before starting dialysis.
Successful kidney transplantation treats your kidney failure and gives you back your health. It also provides a better quality of life and is therefore a preferable treatment for many patients. Usually you will have fewer restrictions on fluid intake and diet after receiving a transplant. Many patients also return to work and lead a full life after transplant.
What are the risks of transplantation?
Kidney transplant surgery is major surgery, and as such, carries a risk of significant complications, including:
- Blood clots
- Leaking from or blockage of the tube (ureter) that links the kidney to the bladder
- Failure of the donated kidney
- Rejection of the donated kidney
- Increased risk of high blood pressure, diabetes, cataracts, stomach ulcers and infection
What other options do I have besides transplantation?
Healthy kidneys clean your blood by removing excess fluid, minerals, and wastes. They also make hormones that keep your bones strong and your blood healthy. When your kidneys fail, harmful wastes build up in your body, your blood pressure may rise, and your body may retain excess fluid and not make enough red blood cells. When this happens, you need dialysis to do the work of your failed kidneys. There are two main types of dialysis used to treat end-stage renal failure, CAPD and CCPD:
- Continuous Ambulatory Peritoneal Dialysis (CAPD) - If you choose CAPD, you'll drain a fresh bag of dialysis solution into your abdomen. After 4 to 6 or more hours of dwell time, you'll drain the solution, which now contains wastes, into the bag. You then repeat the cycle with a fresh bag of solution. You don't need a machine for CAPD; all you need is gravity to fill and empty your abdomen. Your doctor will prescribe the number of exchanges you'll need, typically three or four exchanges during the day and one evening exchange with a long overnight dwell time while you sleep.
- Continuous Cycler-Assisted Peritoneal Dialysis (CCPD) - CCPD uses an automated cycler to perform three to five exchanges during the night while you sleep. In the morning, you begin one exchange with a dwell time that lasts the entire day.
The type of dialysis you choose will depend on the schedule of exchanges you would like to follow, as well as other factors. You may start with one type of dialysis and switch to another, or you may find that a combination of automated and nonautomated exchanges suits you best. Work with your physician and healthcare team to find the best schedule and techniques to meet your lifestyle and health needs.
Do I need to stay close to the transplant hospital while I am put on the waiting list?
Because you never know where you will be when you get “The Call,” it is important to always be ready. The Kidney Transplant Team must have a list of contact phone numbers for you so they can reach you 24-hours a day. Carry your beeper with you at all times. Keep your cell phone with you (even when sleeping) and be sure that the ringer is always turned on. Update the Kidney Transplant Team if you go on a trip. Upon your return, call the Transplant Coordinator to update your status. Again, it is your responsibility to be available. Your place on the waiting list may be jeopardized if we cannot reach you and you cannot get here in a timely fashion.
How soon should I be at the transplant hospital after getting “The Call?”
Ideally, you should be at the hospital just after receiving “The Call” that a kidney has become available. Cadaver kidneys can deteriorate quickly so the sooner you can get to Crozer-Keystone, the better—measured in hours, not days.
What should I bring with me to the hospital?
Have a small bag packed (or at least, a list of what you need to pack) with toiletries, a pillow, comfortable clothes, spare glasses, books or crossword puzzles. You will not need anything until you come out of the Intensive Care Unit at the conclusion of your surgery, at which time your family can bring your personal items. Make sure that your family knows where your packed bag is so that they can bring it when it’s time.
Beyond your personal items, there are a number of other things that you’ll need to have:
- Insurance Information: You must bring all insurance information, forms and cards as proof of current insurance coverage, and if required, you must obtain a pre-certification or referral prior to admission.
- Medication List: A list of all medications that you are taking (but do NOT bring medications from home)
- Power of Attorney or Guardianship: Designate a power of attorney or guardianship if your next of kin is not capable of this responsibility. This designation must consist of a comprehensive plan and be notarized. Our Social Worker will guide you through this process. The designee must be someone you can trust to follow your wishes and act in your best interest in the event that you are not capable. The designee does not have to be your next of kin. Your designee's name must be included on all your bank accounts, safety deposit boxes, and other financial and personal records.
- What Not to Bring: Do not bring televisions, laptop computers, large radios, computer games or electrical appliances. Do not bring money, credit cards, jewelry, flowers/plants, pets, fresh fruit or vegetables, large suitcases, clothes or children less than 14 years of age. Also, be sure to ask your family to take your possessions and valuables home. Crozer-Keystone cannot be responsible for valuables unless they are locked in the hospital safe.
How long does the transplant surgery take?
Kidney Transplant Surgery is major surgery. Generally speaking, your surgery will be two to four hours long, although there are many factors that can affect the time required. You will be under general anesthesia.
Will I be asked to take part in research studies?
Perhaps. Crozer-Keystone takes part in a number of different clinical trials. But the decision to participate is always yours— it is very important to know that you do not have to agree to be involved in any experimental procedures or investigational studies. If the transplant team asks you to be involved in any clinical trials, experimental procedures or investigational studies, be sure to ask insurance company if your insurance policy will cover the payment. If you have questions, ask the transplant team.
We you keep my family informed during and after my surgery?
Of course. You are asked to pick one person as the family spokesperson who will interact with the doctors and nurses about your condition while you are in surgery and after surgery when you are not able to communicate on your own. We will select the legal next of kin unless you indicate otherwise. Your family spokesperson can call the Kidney Transplant Center office for information and questions at 610-619-8420. Once you are out of the Step Down Unit and feeling better, our primary communication will be with you.
What happens after surgery?
After your transplant, you will wake up in Recovery Room of Crozer’s Operating Room and will then be transferred to the Step Down Unit. You will be closely monitored while in the Step Down Unit. The average stay in the unit varies but averages a few days, individualized according to your needs. Your family will be allowed to visit with you in the Step Down Unit.
Infection and rejection are serious concerns with any organ transplant. Taking precautions to prevent infection and rejection will be started as soon as you are moved to the Step Down Unit. Medications and fluid will be given to you through an IV for the first few days after your transplant. You will then learn your medications and how to care for your transplanted kidney.
The average time in the hospital after an uncomplicated kidney transplant is six to seven days.
Why am I placed in the Step Down Unit after my surgery?
Patients are transferred to the Step Down Unit after surgery so that we can keep a close watch on you and your condition following surgery. Infection is a serious concern. Taking precautions to prevent infection and rejection will be started as soon as you are moved to the Step Down Unit. Medications and fluid will be given to you through an IV for the first few days after your transplant. You will then learn your medications and how to care for your transplanted kidney.
What is the length of hospitalization after my transplant?
The average time in the hospital after an uncomplicated kidney transplant is six to seven days.
Do I need to stay close to the hospital post-transplant? If so, for how long?
After you leave the hospital, close monitoring is necessary for a few weeks. Your transplant team will develop a checkup schedule for you.
We will follow you closely for the first few weeks. You will receive an appointment for your next visit to the Kidney Transplant Center and for a procedure to remove a tube in your bladder. We will also give you instructions for lab work or other tests that you might need in order to monitor your progress and identify complications as soon as possible. You should bring your medications and this manual to all of your appointments.
For the first month after your transplant, you will have regularly scheduled follow-up appointments at the Kidney Transplant Center. These visits will be more frequent during the first year after surgery and will gradually decrease over the next few months. After three months or so, you will return to your regular doctor for follow up care. The appointments will involve routine check-ups and blood tests to monitor your progress and to be sure that your body does not reject the organ. Of course, you should always call the Kidney Transplant Team at any time if you are feeling sick or even if you just have questions.
During this time, if you do not live within an easy drive of Crozer-Keystone, you may need to make arrangements to stay close to the transplant center.
What follow-up examinations and tests will I undergo? How frequently?
Routine exams, blood work, laboratory testing and frequent clinical visits are necessary to a successful recovery. Prepare for at least two to three visits to the clinic each week to have blood drawn and participate in a thorough review of your recovery progress. These tests will determine whether or not your current medications are appropriate or need to be adjusted.
The main test used to monitor your new kidney is serum creatinine. A creatinine test reveals important information about your kidneys. Creatinine is a chemical waste product that's produced by your muscle metabolism and to a smaller extent by eating meat. Healthy kidneys filter creatinine and other waste products from your blood. The filtered waste products leave your body in your urine. If your kidneys aren't functioning properly, an increased level of creatinine may accumulate in your blood. A serum creatinine test ultimately measures the level of creatinine and gives you an estimate of how well your kidneys filter waste. Your doctor will provide a thorough review of the results for this tests and provide a direct course of action as necessary.
Beyond the standard blood and creatinine tests, monthly breast and testicular self-examinations are highly recommended, along with yearly PAP smears, breast exams, testicular exams, and skin cancer screenings. Studies have shown that taking immunosuppressive medications can increase your likelihood of developing certain types of cancers. It is imperative that you talk with your doctor to schedule these examinations and to discuss any questions you may have regarding early detection of these types of cancers.
As you progress through your recovery, the need to visit the Kidney Transplant Center will be less frequent, and you’ll eventually be referred back to your primary care provider and/or nephrologist for long-term care.
What medications will I take after I leave the hospital?
You will take a complex regimen of medications when you leave the hospital and for the rest of your life. You may take many different drugs several times a day, including powerful immunosuppressants and steroids, which can have significant side effects. You will also take several drugs to alleviate these side effects. It is critical that you learn about your medications and develop a system to take them exactly as prescribed. Taking these medications is the single most important thing to do in order to prevent rejection and they must be taken as directed. Not taking the medications immediately or missing doses will cause damage to, and eventual loss of, your new kidney.
The medications fall into nine main categories:
- Immunosuppressants (or “anti-rejection” medications): These medications are designed to suppress (or lower) your immune system and lessen the chance of kidney rejection.
- Steroids (the first line of defense for rejection): These medications are also designed to lessen the chance of kidney rejection and will quickly be reduced to low doses.
- Antivirals/antibacterials: These medications help your body prevent viral, bacterial and fungal infections.
- Antihypertensive: These medications, although used to treat high blood pressure, will improve blood flow to your new kidney.
- Cholesterol lowering agents: These medications are designed to lower and manage Cholesterol in your system.
- Diuretics: Also known as “water pills,” these medications help control fluid buildup.
- Various medications to help prevent stomach ulcers.
- Various medications to counter side effects of the immunosuppressants.
- Vitamins and minerals
Will the transplant center team advise my primary care providers of my care requirements?
Yes. Following your transplant, the team at Crozer-Keystone will work closely with your primary care physician and/or nephrologists regarding necessary post-op and follow-up care. Our policy is to keep them—and you—informed every step of the way.
Will I need to return to the transplant center if I have complications?
Perhaps. It depends upon the nature of the complication. Throughout your post-transplant recovery, your Transplant Coordinator will be available by telephone to answer any questions—and there is no such thing as a "silly" or "dumb" question. Many important phone numbers are listed in your Discharge Guide. Feel free to call them at any time.
When can I return to work/school?
Patients usually return to work within 60 to 90 days. But it is extremely important to alert your employer to the potential conflicts that post-operative testing could produce in the workplace. For example, patients may need to be treated for unforeseen rejection or other problem, resulting in additional time off work. It may be best to initially resume your work on a part-time basis or with a flexible schedule until you have a better understanding of how well your recovery process is going.
Ultimately, the decision of when to return to work or school is entirely up to you. If you have questions or any doubts about whether or not you are ready, sit down with your employer and/or family and develop a return strategy.
When can I begin driving again?
Kidney transplant patients, on average, cannot drive for up to four weeks following the surgery. Post-operative medications generally cause drowsiness, weakness, blurred vision and hand tremors and could make handling a motor vehicle very difficult. Please do not attempt to drive a vehicle without the consent and clearance of the transplant team.