I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: okarol on August 15, 2009, 10:28:40 AM
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Check out recent Kidney Talk audio shows:
Across the Country - Dialysis Style
Harvey Wells didn’t let dialysis stop him from doing what he loves to do – travel, have good food and spend time with his family.
Ask The Nephrologist
Listen to these short interviews where Dr. Allen Nissenson answers the following questions:
Why is Heart Disease the Main Cause Kidney Patients End Up Dying?
What Dialysis Treatment Modality Would You Choose?
How Often Should You See Your Kidney Doctor?
What Could Have Slowed Down The Progression of my Kidney Disease?
Creating & Implementing the Rules for Dialysis
Congress passed legislation last year that will require CMS to write the rules on the payment policy for dialysis services. Mike Paget, who has many years experience in the dialysis community will explain how the renal community can be sure to be involved in the process.
These and many other topics to listen to - go to
http://www.rsnhope.info/programs/kidney_talk3.php
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Interesting. I've only had a couple of shows come through in the past few months on the itunes feed..... I do enjoy listening to it though when it arrives. Gotta love Stephen Furst!!!
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Here's an interview I did with Lori Hartwell a few months ago at her house. I think she kind of tricked me into it, saying she was just trying out new recording equipment, so we could I help her do a practice run-through (without Steven Furst.) During the interview her bird was squawking and there were numerous interruptions, so I am amazed that she was able to edit a pretty good finished interview. (I think she knew I would be a big chicken to do it any other way.)
Most of you have heard our story, but if you got time - here it is again.
A Mother's Journey to Find Her Daughter a Kidney
When Karol Franks found out her 14 year old daughter, Jenna, was diagnosed with kidney disease, it began a three year journey to search for the gift of life. Listen to Karol’s heartwarming story about searching for solutions and how she and her daughter found hope through the kindness of a stranger.
http://www.rsnhope.info/programs/kidneytalkshows/Karol_Franks/Karol_Franks_0809.php
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Gee will be fascinated to hear you karol. I will check my itunes when I get home...
seems a bit underhanded to record you and not making it clear it will go out on the 'net though?!?!! Did she inform you later she intended to put it up as a podcast and/or ask for your consent for it to go up?
I normally love these guys but I hope they aren't playing any funny games like that.
Always good to hear Jenna's story anyway!! :2thumbsup; :yahoo;
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Yes, she asked my permission afterward. I said yes as long as I didn't sound like a crazy obsessed mother LOL.
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Karol.. today during dialysis I listened to "your" podcast and I really enjoyed it. Yes, we know the story but it is important to get it out there and perhaps give fellow kidney patients hope or even ideas for how to seek out a transplant. I have to say when you talked about meeting Patrice at the hotel for the first time and you got emotional about it - well *I* was sniffling a bit !! It was emotional for me too and beautiful.
You spoke well and it was a great story!!!! Look where Jenna is now (off to France!) after having the problems she had dealing with dialysis as a teen. It's a fantastic story and must give both your and Patrice's family such pride and happiness to see her thriving the way she is!
:bow; :bow; :bow; :bow; :bow;
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Lovely to hear your voice again, pleased that you are still getting the message out there. :2thumbsup;
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Thanks Richard and Rose. :waving;
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Here is a link to FREE KidneyTalk interviews available on iTunes.
http://ax.itunes.apple.com/us/podcast/kidney-talk-an-online-radio/id139044250
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Karol, just listened to the podcast. Absolutely fascinating and nice to hear your voice again.
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New on KidneyTalk:
Understanding Hemodialysis Dry Weight
Fluid management is a difficult science in hemodialysis. Dry weight involves a lot of guess work and if incorrectly addressed can cause cramping, crashing, fluid overload and impact your heart's overall health. Anne Diroll, CNN is a clinical support specialist for Hema Metrics. She explains the benefits of blood volume monitoring to help people with kidney disease dialyze to their optimal dry weight.
http://www.rsnhope.info/programs/kidneytalkshows/Anne_Diroll/Anne_Diroll_031610.php
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:2thumbsup; More Kidney Talk - go to http://rsnhope.org/programs/kidney_talk3.php to listen to these topics of discussion:
Ask The Nephrologist
Listen to these short interviews where Dr. Allen Nissenson answers the following questions:
How Do I Stay Active with Limited Energy?
Should I Tell My Employer That I Have Kidney Disease?
How Long Can I Live on Dialysis?
What Can I Do About Sexual Dysfunction?
Is it Possible for a Surgeon to Reverse a Failed Fistula?
What Happens if I Don't Follow the Prescribed Renal Diet?
Why is Heart Disease the Main Cause Kidney Patients End Up Dying?
What Dialysis Treatment Modality Would You Choose?
How Often Should You See Your Kidney Doctor?
What Could Have Slowed Down The Progression of my Kidney Disease?
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How Do They Know You Are Okay?
Measuring Quality of Care in Dialysis
This is a tough topic, but a necessary one to understand how the dialysis providers measure the quality of your care. Vincent Dennis, MD explains the proposed quality measures (anemia, bone and mineral metabolism, dialysis adequacy and infection) that are monitored carefully and overseen by Centers for Medicare and Medicaid Services. It is important that people with kidney disease understand that when a measure is set, it becomes the target for the healthcare provider and patients can suffer if they get it wrong.
Play Now http://www.rsnhope.info/programs/kidneytalkshows/Dennis_Vincent/Dennis_Vincent_061510.php
Posted June 15th, 2010
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Reminds me of John Agar's proposed "Good dialysis index" which he discusses at http://www.nocturnaldialysis.org/good_dialysis_index.htm (http://www.nocturnaldialysis.org/good_dialysis_index.htm)
Interesting because it includes the perspective of the patient when "scoring" how satisfactory dialysis is, and there is a sampe of the scoring sheet.
Questions like, "Are you currently feeling ‘pretty good’ about things? " which are problematic questions from a "scientific" perspective but are important. Well I think so.
While looking for that link, I found this:
Congratulations to Ass. Prof. John Agar and Mr Mohan Rao for their recognition in the Queen's Birthday Honors list for their outstanding work in the Kidney Community.
Ass. Prof. John Agar was awarded the Order of Australia Medal for service to renal medicine and to the community in Geelong.
(From the Kidney Health Australia website http://www.kidney.org.au/LinkClick.aspx?fileticket=dKGHXXltSfU%3D&tabid=652&mid=1593 (http://www.kidney.org.au/LinkClick.aspx?fileticket=dKGHXXltSfU%3D&tabid=652&mid=1593) )
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Why Can't I Get Medigap Insurance?
Supplemental Medigap insurance is a must when you have kidney disease. Unfortunately, dialysis patients are denied access to Medigap insurance in over 20 States. Wendy Funk-Schrag and Lori Hartwell discuss how this impacts patients and what you can do to educate your elected officials to help change this unfair public policy.
States that do not have Medigap coverage:
CO, CA*, CT, FL, DE**, GA, HI, IL, KS, KY, LA, ME, MD, MA*, MI, MN, MO, MS, NH, NJ, NY, NC, OK, OR, PA, SD, TN, TX, VT*, WA, and WI
* = offer Medigap to people with disabilities under age 65 but exclude ESRD
** = offer Medigap to ESRD only, no others with disabilities
http://www.rsnhope.info/programs/kidneytalkshows/Schrag_Wendy/Schrag_Wendy_062910.php
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JUst wanted to give a heads up to the latest Kidney Talk that is up which I found quite inspiring and a very good general discussion raising a number of important points that I think everyone could get something out of:
Conquering Life’s Curves
In 1986, Ed Hearn fulfilled his childhood dream as a member of the World Champion New York Mets. The following year with the Kansas City Royals, he was set to make those big "million dollar bank deposits" today's professional athletes are accustomed to, when suddenly, a serious shoulder injury brought a premature end to a very promising and brilliant career. Today, after three life-saving kidney transplants, a successful bout with cancer, the aid of a breathing machine each night, a costly IV treatment once a month, and up to 50 pills per day, Ed has come back to live a life that is truly an inspiration. Listen to the incredible comeback of his life.
http://www.rsnhope.org/programs/kidney_talk3.php
In particular Ed talks about how his treatment team really IS a team, and a community (this I very much relate to), and also his feelings about transplant (he's on his 3rd) and his experiences dealing with renal failure and dialysis in the context of his sporting career.
Highly recommended.
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I made my first visit to RSN website and listened to several of the topics, and I wish I had visited this site sooner because I found it to be extremely valuable. Regular people talking about how dialysis came into their lives and how they cope...really good stuff. I'm going to pay much more attention to the topics on that site!
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Hi MooseMom - There are lots of good topics. In case you didn't read the beginning of this thread, here's the interview I did with Lori Hartwell. http://www.rsnhope.info/programs/kidneytalkshows/Karol_Franks/Karol_Franks_0809.php
Here's Epoman's interview http://www.rsnhope.info/programs/kidneytalkshows/Bill_Epoman_Halcomb/index.php
Anyone who has a story to tell is someone Lori is interested in interviewing, so think about it and I am happy to suggest it to her.