By Amy L. Friedman, MD The process of kidney transplantation is one of both opportunity and risk. While it may seem that you, the patient – at the center of the process – are only a passive subject with little control over events, it is far more accurate to view yourself as the most valuable partner to your healthcare team. Your approach to fill this role is a key factor in reaching a successful outcome. To perform well, thereby helping yourself, you should understand each step leading to transplantation. You must be a reliable historian who is capable of informing the transplant team about all health-related events and you should try to be cooperative and informed of medical events that occur. Ultimately, you must also be a reliable guardian of your new organ. Understanding the Transplant Process Occurring at a transplant center, kidney transplantation is performed by specially trained surgeons. Thus, the first step toward receiving a transplant is referral to a transplant center, either by you or your doctor. Once referred, the center will probably request a list of information (the specifics will vary by center), which is required for the evaluation of your suitability for transplantation. Since many of these tests have probably been performed already, the reports/results are what they seek. This is your first key opportunity to facilitate. Any information requested should be sent promptly. In addition, you should keep a copy and bring an additional copy to the evaluation session. While these actions may seem redundant, the worst outcome of this approach would be that you wasted some time and a few pieces of paper. On the other hand, if a copy was sent to the center and cannot be found, or was never sent, the evaluation is incomplete and transplantation will be delayed. Your ability to quickly act can prevent substantial delay. Individual Medical History Information You Should Have • Operations and invasive procedures • Systemic diseases • Kidney disease • Type of dialysis or estimated time to dialysis initiation • Infections (past and current) • Immunizations • Allergies • Current medication list • Names of all physicians involved in your care • Health insurance and prescription coverage
Become a Reliable Historian When you go to the transplant center for an evaluation, you will be interviewed and examined by the transplant team for two principal purposes. First they will assess whether a transplant is a reasonable option. To provide you with good medical advice, they must understand your entire medical history. Be prepared to provide all of this information to the team from memory or by preparing a list in advance. Be as detailed as possible. If you learn that more detailed information will be required, assist in this process too. For example, if you have been evaluated by a cardiologist, but the transplant center does not know what the opinion was, you will be told that this information is missing. Acquire a copy of the physician’s notes and reports of specific testing, such as a stress test, through a direct request or visit to their office. Keep a copy of these papers for yourself and give a copy to the transplant office. Several days later, make sure they received the papers. Remember, the information was requested for use in helping you get a transplant. If you want to get that transplant, help move the process forward any way you can. The second part of the evaluation includes provision of education to make an informed decision whether or not to pursue transplantation. Listen to all messages you are given, both positive and negative. Receiving a kidney does not solve all problems. It will not regrow an amputated limb, make 50 excess pounds vanish or make a 65-year-old feel as youthful and energetic as a 21-year-old. In general, risks to consider include those associated with the operation itself, such as risk of a heart attack, whether or not the new kidney functions immediately, whether dialysis may need to continue until the kidney begins working and risk of rejection. Some people probably should not have transplants because it seems more likely the process will cause them more harm than help. This difficult judgment represents the expert opinion of a specific transplant team. While this may be very unpleasant to hear and you may disagree with the advice, it is important to understand the specifics of the information you are provided. Discuss this information with your nephrologist who serves as your medical advocate. If you continue to have interest in having a transplant, it might be reasonable to seek an opinion from a second transplant center. This team will also require the same information reviewed by the first. This is another important reason to keep a copy of all the information you provided. Be a Responsible Guardian Focus on the active role you need to take in caring for your new kidney. Medications will become an even more important part of your life after a transplant. Just as you were asked to inform the team of your pre-transplant medication list, you must always tell any healthcare providers which drugs you are taking. Thus, for each medication, you must be able to communicate six elements. Make a written list to avoid errors. Bring this list with you to every appointment. This is the biggest obstacle you will face in trying to keep your transplant functioning for a long time. It is so important that if you cannot responsibly take medications, you should not have a transplant. Similarly, you will be advised to follow a low fat, healthy diet and to maintain an active lifestyle. If you are not able to follow this advice, your risk of gaining weight, developing bone disease and developing diabetes all increase substantially. Six Elements of Medication Usage • Medication name (including all information, such as XL, modified, etc) • Strength (milligrams in each tablet, capsule or teaspoon) • Dosage (amount of tablets, capsules or teaspoons taken at one time) • Frequency (times taken per day) • Duration (length of time on medication) • Availability (when refills are needed)
Understand the Types of Kidney Transplants The education phase of the evaluation should detail the types of transplants that can be performed. If a living person is considering donating a kidney to you, the evaluation steps of the donor will be specified by the center. While it is not appropriate for you to pressure the individual who has made such an offer to you, it may be reasonable for you to be certain they understand the steps they must go through to be thoroughly evaluated. This may include providing the transplant center’s telephone number. If your donor is not informed, their evaluation will not proceed and neither will transplantation. On the other hand, the donor’s right to confidentiality is extremely important. The transplant center is legally and ethically prohibited from sharing any other person’s medical information with you. Should the person who considered donation be found medically unsuitable, you should continue to be supportive and appreciative of the offer, even though transplantation does not occur. If no such individual is available, your only option is to join the waiting list for a Deceased Donor Kidney (formerly the Cadaver Kidney Waiting List). It is important for you to focus on the information provided by the transplant center about this option. As seen to your right, the key steps to receiving an offer from this list start with actual activation on this list. If the center does not tell you this has happened, it probably has not. Ask the team specifically whether it has. If not, ask why and address the reason needed. A monthly blood sample is needed to test compatibility with donor organs. If the tissue typing lab does not have your current sample, they will bypass you on the list. Thus, if the sample is not drawn, sent or received, no organ offer can be made to you. Make certain that these steps are taking place properly. Steps to Receiving an Organ Offer from “The List” • Referral to a transplant center • Evaluation by the transplant team • Activation on the waiting list (ABO blood type required) • Monthly serum available for crossmatch • Highest points on the list at the time of organ availability • Compatible crossmatch • Contact within one hour • Rapid arrival at the transplant center (within several hours) • No factors that make transplantation unadvisable
Waiting for the Organ Offer Call Once you are active on the waiting list, make certain the transplant center can always find you. A time limit of only one hour to accept or decline an offer on behalf of their patient promotes rapid transplantation of the kidney that has often already been removed from the donor. If they cannot reach you, you will not receive the kidney. Provide the center with accurate day and night phone numbers, cell phone number, pager number or any other means of reaching you. If these numbers change, remember to tell the center. If you plan to be unavailable, inform the center of your departure. Verify that they know you returned. Have a plan ready for your means of transportation to the transplant center. If you cannot get to the center, within a few hours at most, you cannot receive the transplant. Summary As you consider transplantation, remember that your active involvement can make a great difference in your care. Medical care is complex and has become so fragmented that one provider often functions without knowing what your other physicians are thinking or advising. There is no magical means through which the transplant center knows every relevant detail about you. Do not assume rapid communication occurs between providers, because it often does not. Do not assume that the transplant center automatically learns of major medical events you are experiencing, insurance changes or altered contact information. You are the only individual present at each phase, beginning with the preparation and selection of options to living with the new organ. Your accurate report of all health events, accurate use of complex and potentially dangerous medications and compliance with advised behaviors will be the foundation of the best available care. Finally, as you become and remain an active partner in your transplant care, you should learn to comfortably ask questions of your doctors and nurses. Listen carefully to what they are saying, but do not be afraid to ask for clarification. Never let pride prevent you from asking for help. They cannot help you solve a problem or address an anxiety if it remains unknown. It is your right and obligation to understand what is expected of you. In return, it is appropriate for them to expect to be fully informed, have appointments kept and medications used accurately. Together you will make a great team. Amy L. Friedman, MD is an Associate Professor at the Yale University School of Medicine Department of Surgery in New Haven, Conn. She also serves on the AAKP Board of Directors and AAKP Medical Advisory Board. This article originally appeared in the January 2005 issue of aakpRENALIFE, Vol. 20, No. 4.
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