Did you know that African Americans are 3 times more likely to experience kidney failure? Because kidney disease often has no symptoms, it can go unnoticed until it is very advanced. But there's good news. Taking steps to live a healthy lifestyle can go a long way towards reducing risk. Read more.
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Conversations to have with your Doctor or Transplant Team: Advocacy tips from Recipients for Recipients
After a doctor's visit, ask for your lab values - don't leave the doctor's office without them! Keep a diary or pocket calendar to record the presence of protein in your urine, blood/pressure, creatinine levels, etc, etc. This will be of great value as the physician monitors the level of kidney function. This suggestion is not only for the kidney recipient, but for all recipients. Each organ has specific lab values which must be monitored on a continuing basis. The more informed you are the more active you can become in your recovery and the longevity of your new organ.
If a procedure or treatment is scheduled, ask your doctor why you need it. The diagnostic procedure or treatment should be explained thoroughly. Find out why the physician wants to perform it, what he's looking for and the benefits versus the risks of having the procedure and if there are alternatives or other options.
You need not suffer, ask your doctor for tips to cope with medication side effects including the possibility of changing a prescription or lowering a dose. There are alternatives. If you are suffering explain your symptoms to your doctor accurately and allow him to realize how they affect you. Understand that everyone is different and that a symptom that someone else can bear may not be bearable for you. Though the reasons, issues may be clear to you, your doctor may need you to explain why a change in medications, dosages or treatments are necessary to relieve the suffering that you feel.
Ask your doctor for a referral to a dietitian and or physical therapist or a mental health professional to help you deal with other health problems. Doctors may not think of this unless you bring it up. They may not know that a dietitian can help you understand your nutritional needs better or a physical therapist can help you get on a physical fitness track. A doctor may also not know that you are anxious or depressed unless you tell him. Medicare (and some insurance) pays for a nutrition consult for people with Chronic Kidney Disease and people on dialysis.
Ask your doctor , social worker and or health care team to help you figure out a plan if your finances or insurance change and make it hard for you to afford care. Ask for a referral to the social worker, financial counselor and if there are hospital charitable fund, clinics or referrals. Understand that this is not a weakness, but people with illnesses are at risk at times to come across financial difficulties.
If you are waiting for a transplant, ask what information the transplant needs and how often. Ask if they prefer notifications by letters, e-mails or phone calls and who to address and who to copy.
Ask any question you have. No question is stupid and different people worry about different things. If you are wondering or worried, ask. It might help to write out your questions and hand them to your doctor when you arrive or fax them over in advance so you don't forget or get rushed or side tracked.
Ask the transplant doctor about his choices for your immunosuppressive agents and how he sees your immunosuppressive drugs being changed and adjusted over time. Some doctors strive to lower the immunosuppressive drugs as much as can be safely done to lesson the long term side effects. Some doctors favor one protocol over another. Become a partner with your doctor in understanding and maximizing your medication regimen.
Ask your doctor or transplant health care professional about your donor. If it's a living donor ask how they are prepared to support them health and mental health wise over time. If it's a deceased donor you can ask for the transplant center assistance in sending an acknowledgement or thank you to the family.
Tell your doctor what your definition of quality of life is: what level of recovery you need to make life worth fighting for or living. Everyone's definition of quality of life is different. This can help your doctor make decisions regarding your care that is respectful of you as a complete human being. You are not your organ - you are whole human being and unique in your needs.