November

Since my Web message in September and the fall issue of aakpRENALIFE, I have received many nice e-mails, letters and calls from everyone regarding my cancer. Your own brave stories and inspiration have encouraged and filled me with gratitude. Thank you.

As an update, I am doing very well. I am still undergoing chemotherapy but have completed radiation. I feel good, am working full time and continue to do much of the same things I always have. There are days when I’m exhausted and tired of being a patient, but we can all appreciate that feeling. 

My cancer has re-opened my eyes to the daily life of a chronic disease patient. Though I have had a kidney transplant for 21 years, the necessary doctor visits and medications had become very routine. I didn’t really have to think about being a patient. Now, I visit a chemo suite once a week, I see my doctor at least monthly and up until last month I was going daily for radiation. One can easily start living their chronic disease, since there are days that feel like all I do is drive from one medical visit to the next. But, I’ve finally realized, as my dear friend always says, “This is the new normal.”

For those of you who are just beginning to live with kidney disease, I am now reminded of what being a “new” patient feels like. To that, I have some advice. 

1. Learn as much as you can about your kidney disease. Check out the AAKP Library for the hundreds of items we discuss on this Web site. 
2. Meet others with kidney disease by attending local events either at AAKP Chapter meetings or by attending a local Kidney Beginnings: Live event. Our new AAKP HealthLine is a great way to listen live to a professional during a FREE teleconference call and then ask questions you may have about your disease. 
3. Ask questions. I never go to a doctor’s appointment without my list of questions. It is too easy to become overwhelmed once I am listening to my doctor and I may forget a question I had previously thought of. This helps facilitate the discussion.
4. Keep records of your healthcare. I love to use aakp My Health™ to track my medicines, test results and ongoing list of medical contacts. There is no way to keep everything in my head and this way I can look at my health history too.
5. Keep a positive attitude. It’s very easy when you are first diagnosed with a chronic illness to become down or angry. Though these are very normal feelings in the beginning, a healthy outlook makes a huge difference. I cannot begin to tell you how many nurses I have met who have told me they see a medical difference in how well a patient does by how positive they are. 

Again, thank you for all of your kind words. I am doing well and happy to report feeling good. I will continue to keep you updated on my progress.
With kind regards,

Kris Robinson
Executive Director/CEO