PAN / Vasculitis Chat

DATE: Nov 23, 2008 P

articipants: Ed:     PSN Moderator
Kristen Hendrickson:   University of North Carolina
Derek Cooper: PAN Group Member
Clem:
Mark Davis:
Dr. Eric Hoy - immunologist

Ed Moderator:  Hello Kristen, how are you doing?

Kristen Hendrickson: Hello. I'm fine, how are you?

Ed Moderator:  Thank you for joining us tonight, we appreciate it.

Kristen Hendrickson: Sure-I'm happy you to do this

Ed Moderator:  Hello Derek. Is this your first visit?

Derek: Yes

Ed Moderator:  I'm Ed, Director of the PAN Network

Ed Moderator:  This is Kristen who is going to chat about vasculitis podcasts

Derek: Hello, I'm Derek Cooper.  I have PAN and Cohn's disease

Ed Moderator:  and then later, Derek, we'll talk to you about the specifics of your condition Kristen, please give url to podcasting page. I'd like to bring it up.

Kristen Hendrickson: http://www.unckidneycenter.org/podcast.html  - This is the URL for the kidney center podcast page

Eric Hoy: Hello everyone!

Ed Moderator:  Alright quick intro here This is Ed - Director of the PAN Network, Dr. Eric Hoy - immunologist,  Derek - a new member and Kristen, who is going to discuss podcasting I will do a Q and A with Kristen and then open to questions. Please hold questions until we're done. Okay, time to jump in..   Kristen, welcome. Glad to have you with us. You guys down at UNC are doing great work

Kristen Hendrickson: Thanks! It's good to hear that

Ed Moderator:  Tell us about yourself Kristen. What you do at UNC, and your background?

Kristen Hendrickson: I work on the Kidney Center web site. As well as the patient education podcasts.  In addition, I also work on some research assistant work. My background?

Ed Moderator:  How long in this position..yes, a bit about your background

Kristen Hendrickson: I graduated from UNC-CH about 5 or 6 yrs ago from the school of journalism. I've been in this position a little over a year. I have some background in broadcast and marketing.

Ed Moderator:  When did you begin the podcasting?

Kristen Hendrickson: I believe it was May of this year. When Dr Falk gave a talk at a vasculitis meeting, we recorded that meeting, and have been making more since.  

Ed Moderator:  Welcome Clem to the chat  

Ed Moderator:  Thanks Kristen

Clem: Just watching

Ed Moderator:  Tell us about podcasting - for those who don't know what the term means.  

Kristen Hendrickson: What if I don't know what the term means ;)

Ed Moderator:  LOL. Make something up...we'll believe you

Kristen Hendrickson: Basically it can be audio or visual content that folks can subscribe to podcasts on iTunes are all free and mostly educational.  The subscribing part is kind of what makes it a "podcast". So technically the audio on our web site is just that, audio but the same tracks on our iTunes page you can subscribe to them and when we add more, they will download to your iTunes.

Ed Moderator:  http://www.unckidneycenter.org/podcast.html. By the way here is the website What do you need in terms of equipment or software to get a podcast

Kristen Hendrickson: Well, you need electricity and a computer with Internet access.  Your computer will need a sound card. You might need to download QuickTime if your computer doesn't already it installed

Ed Moderator:  Download special software?

Kristen Hendrickson: if you want to access them on iTunes, you will need to download iTunes to your computer. http://www.itunes.com  - I believe that most users can download the audio without having to download programs from the Kidney Center web site at least.

Ed Moderator:  tell us about some of the podcasting topics.

Derek: From a look at the website, it appears to use the Flash plugin.

Kristen Hendrickson: the full-length version yes, but the individual tracks are loaded up there differently so the topics include 3 diseases now. 2 of which have a series on medicines.  We cover vasculitis, FSGS and membranous nephropathy we also have 2 series on medicines-for membranous and vasculitis. We've begun translating into Spanish and Chinese for vasculitis

Ed Moderator:  Talk about the structure of the podcasts? Is it a lecture or question and answer?

Kristen Hendrickson: Well, the vasculitis topics are from a talk that Dr. Falk gave. The other topics are recorded Q+A in a studio. The vasculitis medicines are recorded in a studio. Dr. Falk would argue it was not a lecture, but a conversation.

Ed Moderator:  interesting...what have been some of the most listened to podcasts?

Kristen Hendrickson: I know that the "top 3 questions" are popular. The top 3 questions that Dr. Falk is frequently asked by vasculitis patients. Most of our visitors are finding the podcasts on iTunes. I find it interesting that our Chinese feed has been hit pretty hard.

Ed Moderator:  You mean the Chinese are interested in these topics, maybe getting info they can't get there?

Kristen Hendrickson: Perhaps--the topics available in Chinese that are medical-related are pretty sparse on iTunes anyway

Ed Moderator:  And you are also the webmaster, correct?

Kristen Hendrickson: Correct.

Ed Moderator:  What can patients find on this website, what type of resources and info?

Kristen Hendrickson: Patients would be most interested in our Kidney Healthy Library. Here they can find information geared to them, info on glomerular diseases. http://www.unckidneycenter.org/kidneyhealthlibrary.html Your members might be interested in the vasculitis page

Ed Moderator:  tell me about that

Kristen Hendrickson: Well, it covers similar info that the podcasts cover on vasculitis. Basic questions: what is vasculitis, who gets it, treatments, etc.  The page includes visuals--something our podcasts don't have. There's a special section on transplant as well.

Ed Moderator:  thank you, Kristen.  Let's open to questions to from people.  Type a ! if you have a question and I'll call on you. Anyone have a question for Kristen?

Derek: I'm pretty familiar with podcasts.

Ed Moderator:  which ones do you listen to, Derek?

Derek: Well, I don't have an ipod.  I'll click and listen to audio when I find it.  Or video.  I'm actually working on setting-up content for a group I belong to in DC.

Ed Moderator:  Well, Kristen, I thank you for joining us and sharing this info.  I'm really enjoying the podcasts. In fact, I talked with Dr. Falk who said that he would like to do one on PAN.

Kristen Hendrickson: Thanks--I'd be happy to take any feedback or suggestions

Ed Moderator:  So that's exciting. You are welcome to stay if you wish Kristen..we are going to chat about PAN and vasculitis and talk to Derek

Kristen Hendrickson: I understand that most users just listen to the content on their computers

Derek: That's what I do.

Ed Moderator:  otherwise thank you and I know you will get some new listeners..

Kristen Hendrickson: Thanks so much for having me. A podcast series on PAN sounds great

Ed Moderator:  I will be in touch with Dr. Falk next week

Kristen Hendrickson: Have a good night. Please e-mail me if you have any questions or suggestions: kristen_hendrickson@med.unc.edu.  Good night

Ed Moderator:  Take care, good night

Derek: Thanks for doing the podcasts Kristen

Ed Moderator:  Okay..Derek, you are our new member

Derek: Hi

Ed Moderator:  Derek, tell us a bit about yourself.  

Derek:  It took me two years to find the PAN Network.  The more we get information about PAN the more we can get people connected

Ed Moderator:  Tell us about your medical condition...  

Derek: Well, I have PAN and Cohn's disease.  I just wrote an introduction in the Yahoo group. Basically, I have had Mono Neuritis Multiplex - Lost use of my left arm, now mostly recovered. And lost use of my voice, also recovered

Ed Moderator:  Please describe more about Mono Neuritis Multiplex

Derek:  I still have problems with weakness and it's getting worse. It translates as paralysis in the multiple parts of the body. Roughly, I also have damage to my right arm.  The shoulder is wasting.

Ed Moderator:  is there a connection between vasculitis and mono neuritis multiplex?

Derek: Yes, PAN causes it

Ed Moderator:  interesting, I had not been familiar with it

Derek:  PAN attacks the veins reducing blood flow to the nerves. The nerves burn out and, as Dr. Seo described it, it's like cutting a wire. Once the nerve dies then there's no stimulation to the muscles. The muscles quickly weaken

Ed Moderator:  Dr. Eric, do you see lots of MNM in PAN patients

Ed Moderator:  When were you diagnosed with PAN Derek?

Derek: March 2007. They didn't diagnose conclusively until I lost the vocal chord

Ed Moderator:  How did you get a diagnostic biopsy?

Derek:  No, my grandfather had PAN so when I got sick it started to raise alarm bells.  I had the good fortune to have a fantastic Rheumatologist, Dr. Evan Seigel, who also treated my Grandfather

Ed Moderator:  What were your symptoms leading up to diagnosis?  

Derek: Cohn's initially, although I think it could be traced farther back. I started having really weird symptoms around Easter of 2006. My face bloated up.  I was treated for poison ivy with Prednisone.

Ed Moderator:  Hello Mark...welcome Derek: 

Ed Moderator:  how about specific symptoms, Derek

Mark Davis: thanks Ed....sorry about being late

Derek: Immediately after my condition deteriorated. I got tired and very sick.  Constipation and Diarrhea combined - then internal bleeding. By July I had dropped from 150 pounds to 107.  Almost died but survived. Initially they thought I had AIDS.  It was almost comical. You'd think the white blood cell count would have been a clue.  I spent a week in the hospital.  Lost the ability to walk, or stand up. Recovered the walking pretty quickly but the overall recover took a very long time. I appeared to stabilize on Remicade but then in 2007 lost my voice.  

Ed Moderator:  sorry for you bouncing around Dr. Eric losing your voice..related to the PAN or med side effects?

Derek: PAN killed the nerve. At least, that's what I think.  Not sure if it might have been the muscle itself but no, not likely caused by medical side effects.  I also have numbness on my right arm and parts of my legs.   I've been lucky though, my grandfather lost the use of his legs

Ed Moderator:  Derek, what is your current treatment plan now. What meds are you on?

Derek:  In the immediate I'm on Humira, Methotrexate, 5MG Prednisone...Vitamin D, Ritalin for ADHD and Lexapro for depression.

Ed Moderator:  Any questions for Derek? go ahead mark

Mark Davis: Were you diagnosed with a positive biopsy? Just curious because I was diagnosed without a positive biopsy

Derek: No, actually I had an Angiogram that came back inconclusive

Mark Davis: ok...thanks!

Derek: Mine doesn't seem to behave exactly the same as others with PAN

Mark Davis: I can understand!

Derek: It's had Dr. Seo interested especially since they have my Grandfather's history

Ed Moderator:  Dr. Seo is your rhuemy?

Derek: No, I live in Maryland and visited Dr. Seo.  He confirmed the disease.  I'm treated by Dr. Seigel.  Mainly

Ed Moderator:  Great guy. Well Derek glad to have you with us

Derek:  Yes, I was really impressed. Thank you

Ed Moderator:  you did an intro to the group?

Derek: I posted in the yahoo group

Ed Moderator:  Well, I'm going to have go now.

Derek: okay, thank you for doing this

Ed Moderator:  Thank you all for joining...

Mark Davis: thanks Ed...see ya later

Ed Moderator:  take care...


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