Annual Kidney Patient and Family Education Day!

Their mission is "...to improve the quality of life of those affected by kidney disease and related conditions through early identification, intervention, prevention and support services; to promote organ donation; and to empower those we serve for better healthcare both personally and at the local, state, and federal levels."   This is why Northeast Kidney held its an annual education meeting for kidney patients, their families and providers to come together and share information this Sunday.  It's only through education that kidney patients will feel empowered to take charge of their health. The presenters included an RN, pharmacist, nephrologist, dietitian and several kidney patients.

"Something Old, Something New: Treatments, Innovations and Advances" was covered by local RN Sean Cardone. Sean works at the Albany Regional Kidney center and has worked with dialysis patients for nearly a decade. His topics included different modality options including in~center hemodialysis, peritoneal dialysis or PD and home hemodialysis. In upcoming posts, I will explain each of the options and why one may be better choice over another for an individual. He also discussed upcoming advances for kidney patients. The most exciting advancement is an implantable bio~artificial  kidney called the "Kidney Project". The Kidney Project brings together scientists, engineers, and clinicians to create a surgically implantable kidney. The project is directed by Dr. Shuvo Roy, of UCSF. This is projected to go to human trials in the year 2017 and its mission is to enable end stage renal disease patients to live longer, healthier lives without the need for dialysis. This sounds so exciting to me and have been following Dr. Roy since the beginning. This is something I would consider as an option for myself. 

The next presenter was a local dietitian and who is also my dietitian at Capital District Dialysis Center Sue Kovy, RD. She discussed how to eat well to maintain healthy lab values. And the three major concerns whether your pre~dialysis, on dialysis, or had a kidney transplant, sodium, phosphorus and potassium. I refer you back to the section of the blog called "Sodium and phosphorus and potassium oh my" which goes into detail about these three. The major difference between pre~dialysis and dialysis diet is the amount of protein you should be getting. It's important to discuss this with your doctor when your first diagnosed so your getting the proper amount. Sue was followed by Nikki Buell, a graduate of the Culinary Institute of America. She presented four kidney friendly recipes perfect for the upcoming Fourth of July holiday or other summer picnics or BBQs. They included Pineapple Salsa, which can be enjoyed as a snack with low sodium chip or as a topping for meat or fish. The next recipe was her Grandpa Buell's Potato Salad which included tips for reducing the potassium by either double boiling them or soaking them. Then an Asian Inspired Orzo Salad for a main dish. The  last recipe was a Fresh Veggie Salsa with lots of summer veggies in small portions. We were all treated to samples - and let me tell you they were yummy and delicious! 

After a short break was Dr. Katie Cardone, a pharmacist and professor at the Albany College of Pharmacy Nephrology Group. The main point of her presentation was that as kidney patients we should take advantage of our local pharmacist whether its to go over our medications, help eliminate medications we may not need or make sure we are on the most cost effective medications, as that's what they are there to do. We all have a valuable asset that many of us don't make use of enough.  A pharmacist can and should be a member of your healthcare team.

The next part of the meeting is where I took part; it was the patient panel. The panel included myself, Kathe LeBeau, patient and advocate who works with Northeast Kidney, Mary Dengler, longtime CKD patient, and Dr. Tom Schumacher, who is the Medical Director and on the Board for Northeast Kidney and who is also my nephrologist.  Kathe, Mary and I all discussed different issues that affect CKD patients which included joint inflammation and weak bones, anemia and fatigue, and itching and insomnia. These are issues that your doctor may not go into much detail about, but you need to discuss with them if you are experiencing them. We all offered suggestions in dealing with these issues: Kathe suggested that to prevent itching among other things, keep your phosphorus level in control and also avoid hot showers or baths. Mary suggested that to help prevent bone and joint issues to keep your PTH levels in normal range and to stay as active as possible, working with a PT to avoid becoming deconditioned. And if you read "Anemia and Fatigue in CKD" you can get my full presentation. Dr. Tom then wrapped up the panel by speaking about being proactive in fighting CKD. He focused on hypertension and cardiovascular disease explaining the importance of limiting sodium, phosphorus and fluids. He also explained the importance of taking home blood pressures and doing this from the day you are diagnosed.

As you can tell the meeting was filled with valuable information; whether you were newly diagnosed or been fighting CKD for years, you would walk away learning something new like I did. The meeting was then concluded by Carol Lefleur, who is the Executive Director of Northeast Kidney, who spoke about the need to raise awareness for organ donation. She questioned all of us in the room "If not YOU then WHO, and if not NOW, then WHEN?'  This really struck me because she was right, who better then kidney patients to help spread the word about organ donation.  She urged us to get involved in the Advocates' Alliance.

So I'll wrap things up with this: if you have someone you love fighting CKD then get involved, there are over 96,000 waiting for lifesaving kidney transplants - the time is NOW!!!! 

I want to thank you for joining me on this journey, I look forward to your comments, questions and concerns. 

Keep on fighting all you Kidney Warriors.

~Kidney Blogger