Re: Workshops in your area plus -- I am New

[Guest guest]

Hi Alice

Cellcept is an immunosuppressant or "immuno" taken after transplant to prevent rejection of the organ.

For some reason, they found that some people with pulmonary fibrosis have the types of diseases that are responsive to it.

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Workshops in your area plus -- I am NewTo: Breathe-Support Date: Friday, January 22, 2010, 6:16 PM

Hi ,

Thank you for the Welcome note. For IPF we are on the same meds but I just got rid of the Prilosec -- it was causing problems for me related to imbalance, blurry eyes, etc. and I am taking ranitan (sp) an acid reducer now (twice a day) and I feel better. I have Lopressor that I take because I have a stent, but I do not have the others that you have.

A mixture of drugs is more difficult to manage than I would have imagined and I find that the pulmonologists, including the specialists in inerstitial, want your primary care doctor to manage these side efffects.

You have a lot to manage, especially getting ready for a lung transplant. Keep us informed.

I am very new here and have not answered anyone individually. I have read quite a bit about the disease and find that many people on the air are very informed.

I, for instance, do not know what the drug Cellcept is. I wonder if it is like Pulmacort that I take whiffs of morning and night. People refer to taking Cellcept.

Alice 80 NSIP May 05

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

[Guest guest]

Thank you, Kathy.

"Air family": -- You said: "THE BEST THING IS THEY GET IT" YES! YES!

It is tiring being with people you can not be yourself with; people who understand broken legs, replaced hips, triple bi passes, diabetes and cancers but who can not comprehend this medical condition and it daily ramifications.

So many writing here are more serious than I and all are younger than I. We all find it debilitating --

and everywhere I turn, the one directive that comes from all doctors is exercise, in nn uncertain terms. I know this is true, andI find it very hard. to make it a priority. But I will.

I go to a fitness center MWF early mornings and I am going to start TaiChi, once a week.

Take care, all .. Alice NSIP 6/O5 80

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

[Guest guest]

Thank you, Beth and thank you for all of you knowledgeable clarifications and information!!! Alice

From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Workshops in your areaTo: "Breath Support" <Breathe-Support@ yahoogroups. com>Date: Saturday, January 16, 2010, 10:39 PM

There might be an organization in your area offering the Chronic Disease Self-Management Program workshop. That would be even better to attend an actual workshop instead of the on-line program.

The Chronic Disease Self-Management Program is offered by organizations throughout the United States and Internationally. To find a CDSMP program in your area click on your state or country for more details, or scroll down to find your state or country. A list of organizations that are licensed as of this date to give the workshop follows. http://patienteduca tion.stanford. edu/organ/ cdsites.html

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!