Patient Meeting Experiences

As a result of an autoimmune disease, I’ve had Chronic Kidney Disease since I was in my 20’s. Suddenly in my 60’s, I was diagnosed with End Stage Renal Disease-what a shock! There was minimal education from medical personnel, nor was I directed to any patient support groups. What a blessing it was when I found AAKP. The website was filled with the information I needed, and I eagerly attended my first convention in 2005. It was encouraging to interact with the other attendees who also had kidney disease and were learning how to manage it. With the information gleaned from the AAKP website and from attending these yearly patient meetings, I managed to avoid dialysis for three years until I received a kidney transplant seven years ago.

Linda Umbach,
Transplant Recipient
San Francisco, CA

Janice StarlingWhy I think it was beneficial for me to attend an AAKP Patient Meeting and why other patients/professionals should attend because:

1. Attending opened my eyes to the awareness of others suffering with kidney disease and that I was not alone.
2. Attending educated me on what kidney disease is, how to live with kidney disease and the most resent treatment options available to me to maintain a heathy life while on dialysis.
3. Attending empowered me to live a quality life, be the CEO of my body to work alone with my doctors and health care team.
Janice Starling
Transplant Recipient
St. Petersburg, FL

Brian HessThe annual AAKP National Patient Meeting is the best source of kidney disease focused education covering multiple topics and all presented in one place.  It is also the best place I know of for patient and family interaction between various people from all parts of the country.  Personally, I have enjoyed every year I have gone, and always look forward to the next meeting.

Brian Hess
Home Hemodialysis Patient
Edmond, OK
RPA Advocacy Day - Shakur 2There is no doubt in my mind that the AAKP National Patient Meeting is beneficial:
1.    It provides the ideal opportunity for kidney patients, regardless of modality, to interact with other patients to share their experiences, their successes as well as the roadblocks they’ve had to overcome.
2.    It gives patients that opportunity to discuss with an array of professionals their concerns and their needs.
3.    It provides patients the forum to learn about the various products that they may be using in their treatment of their disease from the vendors.

It is so important for all of us to continually focus on quality of care.  The AAKP National Patient Meeting provides that catalyst for all of us to go back to our respective locales and energize other patients to take an active role in their care.

Shakur Bolden
Transplant Recipient
Jacksonville, FL

I’ve been attending the annual AAKP Meeting since 2004. The AAKP Meeting provides a great opportunity to meet with, and learn from, individuals with kidney disease. Hearing their experiences and perspective helps me to fully understand the needs and challenges of the renal community, and aids me in the development of effective quality improvement and educational programs.

Lisa Hall, MSSW, LICSW
Patient Services Director
Northwest Renal Network – ESRD Network 16
Suzanne-Ruff-150x150There is so much hope, information and camaraderie in being with others!  If you or a family member has been diagnosed with kidney disease, or you’re a professional in the field, one of the best things you can do is attend the AAKP (American Association of Kidney Patients) National Patient Meeting. It’s an opportunity to speak directly to experts in the field, learn about new treatments, and make new friends and contacts. Hope, motivation and understanding are key elements. The best part, though, is the caring attitude every single person receives at the conference.”
Suzanne Ruff
Kidney Donor
Mooresville, NC

Bobbi WagerAttending an AAKP meeting is so beneficial to a patient diagnosed with chronic kidney disease. You receive valuable education on CKD. You are not only able network with other CKD patients and health care professionals in the renal community, but the most important aspect of the AAKP Annual Meeting is that you find out you are not alone! You find out you can manage the disease process–and still live a good quality of life!

Roberta “Bobbie Wager, RN, MSN
Kidney Transplant Recipient
San Antonio, TX

 

 

Teri BrowneI would encourage all dialysis and transplant professionals to attend the AAKP National Patient Meeting! As a certified nephrology social worker, I have attended many kidney disease conferences and meetings throughout the country. However, the AAKP national meeting is the one that can best help me make sure my work is patient and family centered, because the entire emphasis of this meeting is what we can and should do to best help kidney disease patients and their families. It is humbling, inspirational and very helpful to my own professional development to meet patients from across the country and get to hear what is most important and helpful for them. There is no better way to enhance your professional education (and get CEU’s!) than to attend this meeting to improve the care you deliver to kidney patients.

Teri Browne, PhD, MSW, NSW-C
Associate Professor, University of South Carolina College of Social Work
University of South Carolina Co-Director for Interprofessional Education for the Health Sciences
Editor, Journal of Nephrology Social Work