- Learn about your medications and take ALL medications as prescribed. Ask your healthcare team about how the medications work to keep you healthy and why you need to take them. Immediately after receiving a transplant, your healthcare team may need to adjust dosing or medications until they find the right regimen for you. Keep a list of your medications with you in case you need to share them with other healthcare professionals or in case of an emergency. Your medications are the lifeline to your new kidney and it is very important to be very consistent taking them all. It may be helpful to use pillboxes and set alarms to make sure you take your medications as directed to help ensure you do not miss doses.
- Attend ALL follow up appointments with your healthcare team. Some patients are surprised to learn that once you are discharged from the hospital you will have many follow up appointments! Often appointments are weekly, then monthly, then less frequent as time goes on and you are doing well with your kidney transplant. In fact, you will have to continue to see the transplant team or your nephrologist on an ongoing basis (typically at least yearly) after your medications and labs are stabilized post-transplant.
- Have ALL the lab tests requested by your healthcare practitioner done on time. The blood tests your doctor recommends are very important to monitor your new kidney, especially to detect any rejection episodes, and to monitor drug levels. They allow your doctor to react quickly to treat any abnormal results. At first, there are many lab tests required, but in time they will be much less frequent. Be sure to have labs drawn at least a week prior to your appointment with your healthcare team. Ask for a copy of your lab results to review with your healthcare practitioner.
- Be honest with your healthcare team about any side effects you experience. You need not suffer. If you are not feeling well or experiencing side effects, explain your symptoms to your healthcare team accurately and how they are affecting you. Everyone is different so a symptom that someone else can bear may not be tolerable to you. Your healthcare team may be able to offer tips for coping with medication side effects, prescribe additional medication to address the side effect, or may consider lowering a dose or changing a prescription if needed.
- Let all your other (non-kidney) healthcare professionals know about your transplant. This is especially important for your primary care doctor and any other medical professionals you see regularly. If you switch to new healthcare professionals in the future or need testing for other medical problems, be sure to let them know you are a kidney transplant recipient.
- Ask questions! Be an active partner in your care. No question is stupid. Different people worry about different things, so if you are wondering or worried – ASK! It might help to write out your questions before your appointment so when you arrive so you don't forget, get rushed, or side tracked.
- Be informed. Make sure you understand why tests or procedures are being done or why medication is being prescribed. You must take ownership of your health. After a doctor's visit, ask for your lab values - don't leave the doctor's office without them! You are a very important part of the transplant team. Speak up and be an advocate for your health and well-being.
- Seek support! If you have emotional, dietary or financial concerns talk with your healthcare practitioner and ask for a referral to a specialist who can help. Dietitian who can help you understand your nutritional needs better. Physical therapist who can help you get on a physical fitness track. Social worker can help if you are feeling anxious or depressed. They can also help you with insurance, disability benefits, or other issues that may be affecting your ability to take good care of yourself after transplant. You can also find support in other transplant recipients, through NKF Peers.
- If you are having trouble paying for your medications, let your transplant team know right away. Transplant medications are very expensive but there are assistance programs available. Your transplant team can help you work on a plan to afford your medication. You are not alone, many others have faced similar issues and so the transplant center is a good advocate and resource as they have likely assisted other in similar situations.
September 7, 2016