WHAT'S NEW WITH PKD?

Hello Atlanta Chapter Members!

I remember when I first learned that I had PKD and asked the doctor what that meant.  All he said was "You have cysts on your kidneys and just have to live with it!" I really didn't think about it again for almost 10 years having no idea what PKD was and how my future would be affected.  It wasn't until moving to Atlanta and being told by a doctor in a routine visit the reality of the disease.  She suggested I see a nephrologist immediately.  I remember thinking how did this happen? How does one not understand the nature of their illness? It occurred to me that not only was my doctor uninformed but also the Internet was still in it's early stages and getting information and education about the disease wasn't so easy. 

As I did begin to educate myself, the sense of empowerment was overwhelming.  There was no way to stop this disease. However, the least I could do was face it with facts, explore research being done and learn how to keep myself healthy as long as possible. I wasn't aware of the PKD Foundation's Chapter in Atlanta until someone at the transplant center told me about it. At that time I was almost at end stage renal failure. Oh but what a joy! Julia Roberts was fantastic with the educational meetings and meeting people who had many of the same feelings and concerns was emotionally gratifying. The realization of how important it was to understand everything about this disease and what was going on in the PKD world hit me like a rock.  

This disease is very individual as far as symptoms and progression. There are things you can do and can't do. However, one of the things you can do is educate yourself!  Had I educated myself earlier, my despair would have been much less. 

This is why I once again would like to bring attention to a wonderful educational opportunity for PKD patients to learn all of the news and great things happening in the world of PKD.  On March 9, 2013 there will be an all day live broadcast from the Kidney Institute at the University of Kansas Medical Center!  

PKD experts will provide the latest information in PKD research, clinical trials, our Accelerating Treatments to Patients initiative and more. There will also be opportunities to submit questions during the event.  

I will host the Atlanta Chapter's broadcast at my home for this wonderful day of education and hope! If you would like to come to my house for this event, you can email me at atlantachapter@pkdcure.org. 

Below are the experts participating and their topics:

Dr. Jared Grantham, Opening Remarks & Clinical Trials

University Distinguished Professor and Kidney Institute Director Emeritus
Department of Biochemistry and Molecular Biology

Department of Internal Medicine-Harry Statland Professor of Nephrology
University of Kansas Medical Center, Kidney Institute 

Dr. Darren Wallace,  PKD Tissue Donation
Associate Professor
Department of Internal Medicine-Nephrology
University of Kansas Medical Center, Kidney Institute 

Dr. Jill Pannetta, CTAP & Drug Repurposing

Chief Scientific Officer
PKD Foundation 

Dr. Connie Wang, Clinical Trials

Assistant Professor
Department of Internal Medicine-Divison of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute 

Dr. James Calvet, PKD Research

Professor
Department of Biochemistry and Molecular Biology
University of Kansas Medical Center, Kidney Institute 

Dr. Alan Yu, Closing Remarks
Professor, Director
Department of Internal Medicine- Division of Nephrology & Hypertension
University of Kansas Medical Center, Kidney Institute 

For a more information about this event, please go to:   www.pkdcure.org/whats-new-with-pkd. 

I hope to see you on March 9th! 

Marlene Stewart

PKD Foundation - Atlanta Chapter Coordinator

Wow! There are so many things to present to you all I doubt I can put them all in one blog!  Since I've started this blog, I'm learning all kinds of amazing things!  It appears when you actually take time to do research on the Internet, you find all kinds of things.  I usually don't find the time to relax and just surf the Internet.  Usually I'm frantically working, paying bills or trying to answer emails.  So this has been interesting and fun for me.  

I'm catching up myself on a lot of PKD news and I am really happy to share some of these things with you all!  So let's get started!

The Flu is the worst it has been in 10 years and PKD patients on dialysis or transplanted must take extra care to keep yourself healthy! It's been a real challenge for me since I've been taking care of a sick family member who has been in the hospital for 2 weeks!  The hospital is not where you want to be when this stuff is going on.  It's quite scary for me as I feel I'm just waiting to catch something.  As you can see from my picture I'm covered up like the Masked Marauder! I have not shaken a hand in several weeks now.  Actually, I try to practice this most of the time.  

Please make sure you keep yourselves safe!  I have done some surfing and  found some sites that might be helpful.  There are many out there but here are some I felt were useful.

• I discovered a very informative article and video from the Massachusetts General Hospital Transplant Center. This site provided in depth advice and guidelines on how transplant patients can Confront the Flu and Cold Season. 

• Northwestern Memorial Hospital also provided some great information about protecting your self from the flu on their Influenza page. 

• On the CDC website there is information about the flu which includes tracking the number of cases in your state. The CDC along with other sites say stay home if you contract the flu. For immune suppressed people it is highly recommended you stay away from crowed areas and follow your normal guidelines more so than ever. 

Ok, now on to PKD news!

What's New in PKD 2013: A Live Broadcast Day of PKD Learning

Saturday, March 9, 2013
10:00 a.m. - 2:30 p.m. Central Time
(local times may vary)

This will be a fantastic day of learning.  The Atlanta Chapter would like to set this up but wants to make sure you would be interested.  Please rsvp to atlantachapter@pkdcure.org if you are interested in attending.  

A Message from the PKD Foundation's CEO

Since Gary Godsey has become CEO of the PKD Foundation, I've witnessed his tireless efforts to amp up the foundation and inspire us to keep up the hard work.  In his 2013: The Year of Hope for the PKD Foundation, a "state of the PKD Foundation" message, he catches us all up with the news in the world of PKD research, the focus of the PKD Foundation in 2013 and how vital it is to volunteer.

Cocktails for a Cure

I am beginning our plans for the 2013 Annual Cocktails for a Cure! 
This event did really last year and it was so much fun!

I will be selecting the location and date very soon.  Once I negotiate the facility the date will be set!
We hope to go to the next level for this wonderful event.  However, I can't do it alone.  Now is the time to let me know if you can help with this event!  I am building my committees right now! Please email me at atlantachapter@pkdcure.org or pkdatlantachapter@gmail.com

PKD Heath Notes by Kelly Welsh

I just love reading Kelly Welsh's blog, Health Notes.  Kelly is a renal dietician and full of wonderful information for PKD patients in ALL stages.  The current blog is about the causes of high blood pressure but her blog is always filled with so many healthy and nutritious information and recipes!  I urge everyone to read it.  Just click on the link above and get started living a healthier 2013!

2013 PKD Foundation Leadership Conference

As previously stated in my first blog, the PKD Foundation will be holding its 2013 Leadership Conference for all Coordinators Feb. 22-24.  I will be participating in the conference representing the Atlanta Chapter.  If there are any concerns or issues you would like me to present to the Foundation, I ask that you reach out to me before the conference.  You can post comments on this blog or email me at atlantachapter@pkdcure.org, or pkdatlantachapter@gmail.com.

Run for PKD

Our Atlanta Chapter no longer has a run connected with our annual walk.  We decided that we needed to focus more on our walk.  However, if you'd like to start a Run for PKD event in conjunction with our walk, please go to: Run for PKD to learn more about it.

As I muddle through as a beginner blogger I continue to learn how to do this better and have jotted down so many things that would be fantastic for us all to explore together.  I am very excited to bring them to fruition.  Again, I welcome any ideas, stories, articles and other blogs to link to on this site.  Let's all unite for a cure to END PKD!

"Some days there won't be a song in your heart. Sing anyway."

-Emory Austin

Marlene Stewart
Atlanta Chapter Coordinator
1.25.13