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Latest VHL radio show

joyceg98
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This week's radio show is about Appreciating Kidneys. In it we talk about how to take care of your kidneys, and what to do if they no longer work.

I talk about my son's experience on dialysis, and about "our" transplant.

Please go to http://powerfulpatient.org and check it out. It's an MP3 file, and you can download it as a podcast if you prefer.

I would appreciate your feedback on this show, and on any of the other shows you will find in the archives.

Thank you!
Joyce

Explore topics in this discussion:

Cancer Surgery Radiation therapy Lyme disease Stroke Pheochromocytoma Breast cancer Dialysis Chemotherapy Stress

21 replies

joyceg98

Starting today, 9 June 2008, there is a very interesting show -- a conversation with Tara Kittle, a move director from Los Angeles, who spent nearly a year getting a diagnosis of Lyme Disease.

It illustrates the difficulties of getting a diagnosis of something where the symptoms might point to a wide variety of illnesses. And in particular, it points up the dangers in relying too much on test results -- tests are not always reliable!

Those of us with pheochromocytomas run into this all too often. In this show I think you will find some good information to share with your doctors in order to get beyond the surface test results and on to the real clinical criteria.

I'll give you one example. Often I get a phone call from someone with two or three kinds of VHL-related tumors who has had DNA testing and come up with a negative result. In other words, the DNA test says you don't have VHL. However, two kinds of VHL-related tumors in one person constitutes a CLINICAL diagnosis of VHL.

Before there was DNA testing, the criteria for a diagnosis of VHL were one person with two kinds of VHL-related tumors, or a person with one kind of VHL-related tumors and a first-degree relative with at least one kind of VHL-related tumors.

Just because there is now a DNA test, we can't throw away the clinical criteria. The DNA testing is still imperfect. Most labs have an 85% effectiveness rating -- in other words, they have a 15% room for error. Even the labs with stars on our listing at http://www.vhl.org/dna have 1% room for error -- that's as good as it gets in nature. But when you DO meet the clinical criteria and they can't find it in the DNA, either the lab you are using is not finding it and you need to test again with a lab with a higher hit rate, or you are in that very small space where we don't yet know how to find the error that is causing the problem.

For example, what they do not yet test is the material between the codons. There are three codons, or coding sections, of the VHL gene. Between them there is material which they used to call "filler" on the assumption that it doesn't do anything useful. However, in the last few years they are realizing that this "filler" indeed does play a role that we don't yet understand. We have two people whose only change in the VHL gene is in the "introns" (this "filler" material between the codons). Clearly it does play a role, because both of these people meet the clinical criteria for VHL.

The bottom line message is: you AND YOUR DOCTOR need room to use INSTINCT and clinical criteria -- in addition to test results -- this is not always possible in today's insurance and legal structure in the U.S.

Please listen to Tara's story, and share your own experience as well.

Send this feedback or other questions to questions@powerfulpatient.org

Many thanks and all best wishes,
Joyce

joyceg98

After all that, I didn't post the URL for the show:

Go to http://powerfulpatient.org

If it's after June 16, 2008, click the Archives, and you will find these shows listed there. They will be available for at least a year after the week they are featured.

Best wishes,
Joyce

joyceg98

The guest on the Powerful Patient this week is a member of this support group. See if you can figure out who it is!

We have a conversation about blogging, and the value of blogging in her life.

http://powerfulpatient.org

All best wishes,
Joyce

joyceg98

This week's guest (beginning July 14) is a retired radio broadcaster from Cleveland who had breast cancer in 1975 and 1977 and underwent chemotherapy at that time. She had a recurrence in 1996 and went through radiation therapy for that one.

It's a very interesting discussion -- not just about breast cancer and chemotherapy, but about SURVIVAL and dealing with a chronic illness.

Meet Rena Blumberg Olshansky.
http://www.powerfulpatient.org

You might also want to look through the Archive, and browse the Index of Topics. There's a lot about VHL.

Last week's show had more than 16,000 listeners! They are now advertising the show on terrestrial radio (traditional land-based radio) and the listenership is rising steadily! But of course at base, it's FOR YOU.

Best wishes,
Joyce

gale

Thank you Joyce. How long have you been doing this on line radio spot and what do you think the future holds for this venue?

Since you seem to cover other issues other than VHL, how can this radio spot help our VHL community?

Thanks,
Gale

joyceg98

Responding to Gale's questions above,

How long have you been doing this on line radio spot and what do you think the future holds for this venue?

>> It has been a fascinating opportunity to speak with prominent people about the concerns of our community, and to get some interesting parallel experiences from other conditions.

>> It also makes a show that can be listened to world-wide, without the range constraints of traditional radio.

Since you seem to cover other issues other than VHL, how can this radio spot help our VHL community?

>> Number one, it's raising visibility of VHL. I get to say VHL as often as I like, and use examples from VHL all the time. I am also promoting our website, and hopefully raising some donations.

>> In choosing topics, I think: What can we learn from other conditions? What can other people learn from us? Many people with VHL have said to me, my friend has X disease, which I know nothing about, and yet I was able to be of real help to her simply because of what I have learned about managing VHL. That is the dimension this show deals with.

>> For example, in speaking with Tara about her difficult journey to diagnosis of Lyme disease, we talked about the pros and cons of using test results alone to diagnose conditions. This happens all the time in diagnosing pheochromocytoma. And I have heard people with four kinds of VHL-related tumors being told they "don't have VHL" simply because they can't see it in their DNA. What ever happened to medical common sense? If it meets all the clinical criteria, then it's VHL. And the fact that we don't see it in the DNA tells us that we don't know everything about DNA testing.

>> In VHL, we are just getting one big toe into the world of "chemotherapy" -- using powerful new drugs in hopes of stopping or at least slowing down tumor growth. Other conditions have used chemotherapy for a long time. Other conditions are beginning to see effective drugs for their rare disease. What do we need to learn about the trial and use of these drugs? About funding them? About changes needed in legislation that will be important to us when we have a drug? What if there were a drug that could keep tumors at bay, but it cost $7000 a month?

I am working now on a series using breast cancer diagnosis and treatment as a model for the evolution of diagnosis and treatment of a tumor condition over the past 30 years -- early detection, better treatment, and some contribution from drugs, but there is still no "magic bullet". Early detection and optimal treatment are still the most important ingredients, just as they are for VHL.

And most important, we are hoping to use this as a platform to generate some income. You will see more advertising and hopefully some syndication, to generate some base income for VHLFA.

We are now up over 16,000 listeners a week! So more people are hearing about VHL all the time.

Best wishes,
Joyce

gale

You wrote: What can we learn from other conditions? What can other people learn from us? Many people with VHL have said to me, my friend has X disease, which I know nothing about, and yet I was able to be of real help to her simply because of what I have learned about managing VHL.

I think the other applies as well. I consider myself to be a professional patient due to VHL. It has taught me not to give control over to the physician and be a part of my care or my husband's care in this case.

My husband is dealing with heart issues at the moment. He had heart surgery in 1991 to repair a birth defect in his heart. He has many of the same symptoms now as he had before the surgery and has had over the years.

I wasn't able to go to my husband's primary care appointment, but told hubby what I wanted. He expressed this to his doctor. The doc then asked him a number of questions and hubby walked out with the referral that I requested (pulmonary).

By the way, the doctor asked my husband if I was a nurse and he said no my wife is a professional patient. Of course he had to explain.

Hubby also received a referral to a cardiologist. I think the cardiologist has tunnel vision and is not looking at the entire picture (sound familiar).

The cardiologist's office called yesterday at 5:11pm saying that hubby is scheduled for a heart catheterization at 9:30am today. I cancelled the appt., not because he doesn't need it because all the data isn't in yet. I will seek out another cardiologist with the test results we have gotten so far (or will get from his primary care physician). We are working on pulmonary issues as well.

Sorry for going on, but I gave you the short version. :)

How do you think we (the VHL community) can help you with the radio spot in raising money and awareness for VHL?

Gale

joyceg98

This week's show is about FOOD -- we all need it, and it has become extremely confusing in this country to figure out what's good for you and what's bad for you. Packages that say "healthy" and "all-natural" may contain too much salt, sugar, and preservatives that are in fact NOT good for you. So if "healthy" can be bad for you, what labeling can you trust?

The interview is with Kurt, a 10-year survivor of metastatic cancer. He has metastatic tumors throughout his body -- still -- but has kept them small and trouble-free for ten years, by focusing his energy on eating well. He shares what he has done to discover how to eat right, and support his body in healing itself.

Gale is a good example of someone who has done that with VHL. From all the people with VHL I have spoken with over the years, I am convinced that the food we eat plays a VERY large role in how severe VHL will be. And at the same time, I know all too well how confusing it is to try to find good nutritional advice.

I hope you will listen to the show, and perhaps we can have a follow-up conversation here about nutrition.

Best wishes,
Joyce

gale

Hi Joyce,

Your latest topic perked my interest, so I went to the vhl.org web site to look for it. I had a little trouble finding the link for the pod cast. If you can, can you please give us the link where it can be found when you let us know the latest discussion? I guess this is our perk since you are part of our vhl world. :) Maybe when you let us know about the upcoming program you can give us about 2-3 days notice; include the link and the date. It may take us a couple of days to read our emails. Many of your topics, I find very appealing.

I liked what you wrote under this topic on "Food Matters". Here's the link: http://www.powerfulpatient.org/archive/2008/0830_food_matters_too.php Click on "listen"

I feel there is so much we can do to help ourselves. What we put in our mouth is number 1. I am actually having difficulties coming up with interesting and healthy vegetable dishes. Perhaps this is something we can do together. I will create a new discussion under "Recipes". I had a good one last night. I'll post it under "Recipes". I hope everyone will join me. I need some help!

What we do hear as far as ingredients and what we should eat and not eat is very confusing for me as well. There is always something to learn. Actually I find many labels to be so confusing that I'm thinking of taking a complimentary nutrition program. I have studied" Natural Healing" modalities with the focus on herbs for a couple of years already and find the more I learn, the more I need to learn.

One way of learning is learning from each other, real life situations. If you want to help yourselves (really help yourself), lets see what we can all learn from this.

I'm going to create a "Recipe" discussion and a "Nutrition" discussion. Join me. I want to learn what others are doing as well. What works and doesn't work for you.

Be well,
Gale Lugo

joyceg98

Thanks, Gale, that sounds great!

The interview I did this morning and that will go up on Monday July 28 is with Peter Saltonstall, the new head of the National Organization for Rare Disorders. It was a fascinating discussion, mostly about how we as patients can help to reduce the number of medication errors that happen in hospitals. Something like 1.2 million people are injured due to medication errors each year, and 102,000 people die due to reactions to medications they took according to instructions.

I'm editing it over the weekend, and will tell you more later. Meanwhile, the interviews are up for a year after the feature so going immediately is not critical. Browse around and have fun!

The podcast menu is at http://www.webtalkradio.net/index2.php?option=com_podcast&feed=RSS2.0&no_ht ml=1&catID=26

You give me a good idea -- I'll put it into the left-hand blue bar.

Thanks!
Joyce

joyceg98

I missed telling you for a couple of weeks about the radio shows.

July 28 - there's a delightful interview with Peter Saltonstall, the new President of NORD. He has been working intensely on improving patient safety in hospitals.

August 4 - Consumer Reports came out with a survey of sleep habits, and a review of sleep aids. The show is an interview with one of the editors of the report. Fascinating information about how to get a good night's sleep!

August 11 - we talk with Raymond Francis, author of the book Never Be Sick Again. Yes, he's a bit of a zealot on the subject, but there's a lot of good stuff in this book and in the interview. See what you think.

August 18 - next week our own Gale Lugo discusses Raymond's book with me, and shares what she has been doing for the past fourteen years -- very similar to what Raymond proposes. She has significantly slowed the pace of VHL for herself. Hear what she has done, and how you too might be able to regain some control over VHL.

See http://powerfulpatient.org

Thanks for listening! We are now consistently over 20,000 listeners a week!

Best wishes,
Joyce

joyceg98

Beginning August 25 - we have a fascinating conversation with Dr. Jeanne A. Wilson of East West Conception Center in Los Angeles, an acupuncturist and an expert in Chinese medicine. For the past ten years Dr. Wilson has focused on helping people (both men and women) who are trying to get pregnant. She brings together Chinese and Western medicine to support their reproductive health and help them have a healthy baby. Dr. Wilson works with a network of IVF clinics and gets excellent results.

We talk about the baby-making process and what it needs. Dr. Wilson has insights that are helpful to everyone. Especially for people who know they are already dealing with one potential genetic flaw, it is particularly important to make sure that the DNA we pass to that child is as well formed as it can possibly be, not complicated by additional copying errors, and that the billions of new cells produced throughout the nine months of gestation and the first year of life have all the raw materials they need to be healthy and correctly made.

You can tell I'm working to get a little ahead, since I will be leaving August 30 for Denmark, to participate in the VHL Medical Symposium there. I'll do some recording while I'm over there as well.

Best wishes,
Joyce

joyceg98

I finished two more radio shows that will air while I'm in Denmark for the Symposium.

Beginning September 1, an interview with Sharon Terry, President of the Genetic Alliance, We talk about her own story and how she and her husband are working hard to make a difference for their two children with PXE. We also talk about Sharon's vision for the Genetic Alliance, and what the GINA legislation will mean to all of us.

Beginning September 8, a fascinating discussion about a newly-emerging industry: Medical Tourism! Yes, in order to save costs individuals and now insurers are looking outside the country. Some 750,000 Americans went outside the country for medical treatment in 2007, and that number is expected to double this year! I interviewed the CEO of Pinnacle Health, a health insurer who is offering to their members the option of going to New Zealand for treatment -- it costs them less than half what the same procedure would cost in the states, and because they save a bundle, they are willing to waive all co-pays.

They are hoping that this kind of "consumer-driven health care" -- where consumers weigh cost as well as service in the equation -- will begin to drive down the spiraling cost of health care in the U.S.

I also interviewed the CEO of MedTral in New Zealand. New Zealand is setting itself up as a "destination" for medical tourism -- like a "destination wedding" where all the guests are invited to fly to the Caribbean, here the patient and an escort fly to New Zealand, spend a few days getting settled and touring, and then have treatment at a top hospital. While they are marketing mostly to the US, Canada, and the UK, this is a possibility that could be considered for people from other countries where the expertise is simply not available.

Best wishes,
Joyce

joyceg98

In today's e-mail I received the following news release, aimed at corporations:

Global healthcare, also known as medical tourism, is an emerging industry that is no longer just a self-pay and cosmetic surgery phenomenon. Increasingly, patients are traveling for “serious” surgeries, including major non-cosmetic elective procedures such as joint replacement, heart valve replacement or back repair, with cost savings ranging as high as 60 to 90 percent. Although many of these patients lack health insurance, some have high-deductible plans or are going for procedures not covered by their health insurer.

More than 500,000 Americans chose offshore medical treatment from places like Thailand, Singapore, and India in 2005, according to the National Coalition on Health Care. McKinsey & Company estimates that in India alone, medical tourism revenue could hit $2.2 billion by 2012.

“Amidst an increasingly bleak US healthcare landscape, informed Americans now have financial leverage when considering expensive medical procedures. With more than 100 American-accredited hospitals now offering hundreds of treatment procedures and super-specialties, it pays the healthcare consumer to be informed—the savings often far outweigh the rigors of travel abroad,” according to Josef Woodman, Author, Patients Beyond Borders

Employers, health plans and benefits consultants are taking notice and in some cases are launching pilot programs to cover some procedures performed abroad, forming medical-tourism subsidiaries and considering policies to cover workers who head to a foreign country for treatment. Organizations who understand the emerging market will be well-positioned to get involved early and to benefit as the field evolves.

joyceg98

This week's radio show is about the issues facing our soldiers returning from Iraq and Afghanistan. Health care issues are one of their heaviest burdens, including care for the invisible but very real issues of Traumatic Brain Injury and Post-Traumatic Stress.

Whether or not you agree with the war, whether or not you are in the military, I think you will find this program interesting. TBI and PTSD also occur in VHL. And the difficulties faced in finding care for these issues is comon to us all.

And starting November 17, the Anti-Cancer Cookbook.

All best wishes,
Joyce

joyceg98

The latest radio shows are listed at http://powerfulpatient.org

In particular I think you will love the one on Laughter Yoga. Sandy will be doing a workshop for the Massachusetts chapter on February 1 at 2 pm in Watertown, Massachusetts.

This week's show is on recognizing when someone is having a stroke, responding quickly, and the recovery process. The recovery is similar in some ways to getting over brain or spinal surgery, so I think you will find it useful.

Next Monday there's a very informative and enjoyable conversation with a professor of nursing from Toronto who is an expert in improving patient care and preventing medical mistakes. We talk about how hospitals can tighten up procedures and prevent mistakes, and also about how patients and families can avoid medical mistakes. We play a very important role in the process too.

Best wishes to all,
Joyce

joyceg98

We are interested in learning your preferences for how we should be delivering health care information to you. We have experimented with a number of different methods -- which are your favorites?

Please take the survey posted at http://vhl.org

or go directly to
http://www.zoomerang.com/Survey/survey-intro.zgi?p=WEB228L2D2Y3DG

joyceg98

The two latest radio shows are really good interviews with parents of children with special needs. I particularly like their philosophy of life, and I think you will find them helpful, whatever your issues.

The show that started December 24 is an interview with Martin Ramirez, whose son has Downs syndrome. It is particularly good to get a father's perspective, since men are often less open in discussing issues like these.

The show that begins tomorrow, December 31, is an interview with Gina Gallagher and Patricia Konjoian, whose book, "Shut Up About Your Perfect Kid" is an irreverent look at life with a child with mental illness. Again, it's not just about the particular condition, it's about the mindset and attitude they bring to dealing with this very challenging condition.

I hope you enjoy these shows!

Beginning in January we are moving to a shorter format to make it more podcast-friendly. We are always looking for good show ideas, so please send your ideas to director@vhl.org.

Thank you!
Joyce

joyceg98

This week's radio show / podcast is an interview with Sarah S., the VHL Chapter Chairperson in Minnesota. We talk about creating and maintaining your health care team, that elusive but essential entity that works with you to find the best answers to your health care issues.

Please join us at http://powerfulpatient.org, show 09-03

Best wishes,
Joyce

joyceg98

This week's radio show is a discussion with another one of our members, Tina, who talks about nutrition. I know you will enjoy the discussion, and getting to know Tina a little better as well.

See http://powerfulpatient.org, show 09-04.

Cheers,
Joyce

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