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Re: Where to go?

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There is a Support Group at Muir Hospital in Walnut Creek on the

1st Tuesday of the month, from 6:00-7:30pm. It is not specifically a

Kaiser group, but many of the members are Kaiser patients. I think

that it is sponsored by Pacific Bariatrics (which is where the

original Kaiser patients had their surgery in San Diego). I have yet

to find a group in the Livermore-Pleasanton area, so I go to both the

Walnut Creek group and the Fremont Kaiser group (2nd & 4th Fridays,

6-8pm). It would be great to meet more people at either group who

participate on this site.

Rosemarie

>

> New member, first post - a pre-op Kaiser patient in Walnut Creek.

>

> The San Leandro support group recommended I join this chat group and ask

> where are support groups in the Walnut Creek area.

>

> Where to go, please?

>

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Mike,

National Jewish is terrific but it is only one of many places that are equally skilled in dealing with pulmonary fibrosis. If you go to this website: www.ipfnet.org you will find a map with 22 university medical centers listed that are cooperating and coordinating in both treatment and research in interstitial lung disease. You will also find contact names and phone numbers.

We've had several people recently who have gone to National Jewish. I get my care at Duke University in North Carolina. We have members who go to Emory in Atlanta, University of Pennsylvania, University of Chicago, Mayo Clinic and Cornell University. All get excellent care.

There are other places also but the ipfnet website is a good place to start. You can feel confident that any of those hospitals will be extremely well informed, knowledgable and able to help you

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, June 29, 2009 1:30:00 PMSubject: Where to go?

Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike

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Hi Mike,National Jewish Hospital in Denver, CO is world renown lung hospital and many of the people in this group have gone there. They have patients come from all over the world to be worked up and they have experience setting up and communicating with doctors back 'home' for patients. I think you would be well served there. Good luck to you and let us know what you decide and where you end up going.Peggy E. (former Denver CO resident, National Jewish patient)Subject: Where to go?To: Breathe-Support Date: Monday, June 29, 2009, 10:30

AM

Hi,

I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.

After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?

Thanks,

Mike

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Hi Mike,National Jewish Hospital in Denver, CO is world renown lung hospital and many of the people in this group have gone there. They have patients come from all over the world to be worked up and they have experience setting up and communicating with doctors back 'home' for patients. I think you would be well served there. Good luck to you and let us know what you decide and where you end up going.Peggy E. (former Denver CO resident, National Jewish patient)Subject: Where to go?To: Breathe-Support Date: Monday, June 29, 2009, 10:30

AM

Hi,

I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.

After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?

Thanks,

Mike

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Mike, there isn't much to add . National Jewish is the best pulmonary hospital in the world. There are other hospitals of excellence and I cannot speak for them but National Jewish is a wonderful center. I went there and the treatment and tests are like none you have ever had. They don't just "drop" you when you leave either. They keep in touch with your Pulmonary doctor. Your treatment is to be treated like royalty. The technicians and doctors talk to you for as long as you need. There seems like no rush what so ever. You can ask as many questions as you want and they will explain without urgency. I found National Jewish to be wonderful. Joyce Rudy, AZ birds

Where to go?To: Breathe-Support Date: Monday, June 29, 2009, 10:30 AM

Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike

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OK. Thanks JoyceR.

Hope your 'house cleaning' is going as you want it to. What a huge job.

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Where to go?To: Breathe-Support Date: Monday, June 29, 2009, 10:30 AM

Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike

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as an outpatient, i will say the same thing about University of Pennsylvania

my only complaint is that they haven't come up with a "magical" cure

Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Where to go?To: Breathe-Support Date: Wednesday, July 1, 2009, 1:55 PM

Mike, there isn't much to add . National Jewish is the best pulmonary hospital in the world. There are other hospitals of excellence and I cannot speak for them but National Jewish is a wonderful center. I went there and the treatment and tests are like none you have ever had. They don't just "drop" you when you leave either. They keep in touch with your Pulmonary doctor. Your treatment is to be treated like royalty. The technicians and doctors talk to you for as long as you need. There seems like no rush what so ever. You can ask as many questions as you want and they will explain without urgency. I found National Jewish to be wonderful. Joyce Rudy, AZ birds

Where to go?To: Breathe-Support@ yahoogroups. comDate: Monday, June 29, 2009, 10:30 AM

Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike

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Joyce,

Thanks!

Adrienne

From: mike_dulin <mikedulin (AT) gmail (DOT) com>Subject: Where to go?To: Breathe-Support@ yahoogroups. comDate: Monday, June 29, 2009, 10:30 AM

Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike

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,

Thanks!

Adrienne

From: mike_dulin <mikedulin (AT) gmail (DOT) com>Subject: Where to go?To: Breathe-Support@ yahoogroups. comDate: Monday, June 29, 2009, 10:30 AM

Hi,I'm Mike in Finland who joined the group a short while ago. I was diagnosed here with Pulmonary Fibrosis a short time ago. My Doctor here has encouraged me to see if I can get a better handle on my condition in the USA, A biopsy has not been done.After lurking in the group for this short time I'm getting the feeling that National Jewish is the place to go. Or am I wrong?Thanks,Mike

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