People are often shocked to learn that I have lived with kidney disease for over 46 years, surviving 40 plus surgeries, 13 years of dialysis and now living with my fourth kidney transplant. I can tell you one thing that has helped me survive: being as educated as I can about my illness. When you are knowledgeable and engaged about your illness, health care professionals quickly take notice. I think they deliver the best of care as a result.
Becoming educated about your illness is something you must want to do. No one will force the information on you – you must seek it out! Information is your most powerful ally. It will help you choose the right doctors, make good decisions about your healthcare, gain confidence, and feel less out of control.
Have high expectations about getting the care you need. I have certain expectations of how doctors will interact with me. I’ll never forget the time I saw a new cardiologist. He looked at my chart for a couple of minutes, asked me for minimal information then directed me to follow him as he proceeded to walk out of the treatment room door and around the corner. He handed my chart to the receptionist and said, “I’ll see her in 6 months.” I looked at him, then looked at the receptionist and said, “I don’t think so!” The entire visit may have taken three minutes max. This was unacceptable to me. I knew I had to find a new doctor to get the care I deserved.
Communication is key to good care. I know I have to be an active participant during an appointment, but so does the doc! When I see a new doctor, I bring a list of my medications, a brief bullet point typed medical history, and names and phone number of my other doctors. This always gives me more time to discuss my medical issues. Doctors are required to do a lot of documentation and I gain more time for communication by doing some of it for them.
I prepare a list of questions, and if I don’t understand a diagnosis, treatment, or medical jargon – I ask. I let my doctor know if I think a prescribed treatment will be hard for me and I ask if any other options are available. It is great to ask doctors open ended questions as you get more information. I might ask: “How do most of your patients feel after the procedure?” I do ask that all medication prescribed be cleared by a Nephrologist. Some common prescribed medications are not good for the kidneys or may have different effects if you require dialysis.
Be alert and purposeful about what you want to take away from every interaction. I only take a friend or family member when I can’t think clearly or am very emotional about a doctor visit. It isn’t realistic for me to arrange for or ask for a friend or family member to go to all my routine doctor appointments.
Before I leave the doctor’s office, clinic or hospital, I make sure I know what I am supposed to do. I also ask the doctor what is considered an emergency. I can rest more easily knowing when I need to call if I have a temperature, pain or blood pressure problems.
Give your schedule and your condition the attention they deserve! I keep my appointments or I call and reschedule if I can’t make them. This is so important. I never want to be labeled as a “no show” as my life depends on the doctor and staff knowing I take this seriously.
There is always more to learn. If I am having a new healthcare issue, I ask for written information, videos, websites and any other information that can help me continue my education toward my self-proclaimed degree as a professional patient. Knowledge saves your life!
About the Author
Lori Hartwell, founder & President of the Renal Support Network (RSN), was diagnosed with kidney disease at the age of two. In 1993 she founded RSN to instill “health, happiness and hope” into the lives of those affected by chronic kidney disease. Lori is also the author of the inspirational book “Chronically Happy: Joyful Living in Spite of Chronic Illness” and is a four-time kidney transplant recipient.
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