Re: New member / recently diagnosed

[Guest guest]

Hi , welcome to the group! I'm sorry that you have need of a group like this. Has your physician told you what type of ILD you have? That of course is the purpose of the lung biopsy...to give you a more specific diagnosis. Try not to be too frightened. One thing we always tell each other is that we don't have an expiration date tatooed on our fannies. Make a list of questions that you want to ask your doctor.

How difficult is your breathing now? Are you needing supplemental oxygen? If they are already talking about lung transplant are you being seen at a teaching hospital? Hopefully that decision won't need to be made quite yet.

In the meantime, read the message archives. There is a tremendous amount of information there. Ask any questions you like. If we don't have an answer there is likely someone who can direct you to a resource.

Good luck!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Mon, November 16, 2009 4:58:14 PMSubject: New member / recently diagnosed

My name is and i was diagmosed last week with Institional lung Disease. I hope i am spelling this rigt. I was told from the beginning abt lung transplant and being a good candidate bc of age and so far no other medical probs. I'm on prednisone(60 mg) and imuran (50 mg). I had open lung biopsy to confi diagnosis. Any and all insight will be greatly appreciated. This is all so new and scary to me..God Bless!

[Guest guest]

welcome

sorry you're here

but glad you found us

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: New member / recently diagnosedTo: Breathe-Support Date: Monday, November 16, 2009, 4:58 PM

My name is and i was diagmosed last week with Institional lung Disease. I hope i am spelling this rigt. I was told from the beginning abt lung transplant and being a good candidate bc of age and so far no other medical probs. I'm on prednisone(60 mg) and imuran (50 mg). I had open lung biopsy to confi diagnosis. Any and all insight will be greatly appreciated. This is all so new and scary to me..God Bless!

[Guest guest]

Hi , my name is and I too have been diagnosed with lung disease. I

am so frightened right now and can't believe it. Will be nice to talk to others

about this.

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> Subject: New member / recently diagnosed

> To: Breathe-Support

> Date: Monday, November 16, 2009, 4:58 PM

>

>

>  

>

>

>

> My name is and i was diagmosed last week with Institional lung Disease.

I hope i am spelling this rigt. I was told from the beginning abt lung

transplant and being a good candidate bc of age and so far no other medical

probs. I'm on prednisone(60 mg) and imuran (50 mg). I had open lung biopsy to

confi diagnosis. Any and all insight will be greatly appreciated. This is all so

new and scary to me..

>

> God Bless!

>

>

[Guest guest]

Hi, and . Glad that you found us, but sorry that you need to. I have known I have this disease for a little over a year, and have gone from scared to just living my life. This forum has been a big part of getting me from there to here, and I know you will find the same knowledge, warmth, caring, and humor in this group as I have, along with many tips and many answered questions. I look forward to getting to know you both.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

To: Breathe-Support Sent: Tue, November 17, 2009 9:55:19 AMSubject: Re: New member / recently diagnosed

Hi , my name is and I too have been diagnosed with lung disease. I am so frightened right now and can't believe it. Will be nice to talk to others about this.> > > From: monicatejeda1 <monicatejeda1@ ...>> Subject: New member / recently diagnosed> To: Breathe-Support@ yahoogroups. com> Date: Monday, November 16, 2009, 4:58 PM> > > Â > > > > My name is and i was diagmosed last week with Institional lung Disease. I hope i am spelling this rigt. I was told from the beginning abt lung transplant and being a good candidate bc of age and so far no other medical probs. I'm on prednisone(60 mg) and imuran (50 mg). I had open lung biopsy to confi diagnosis. Any and all insight will be greatly appreciated. This is all so new and scary to me..> > God Bless!> >

[Guest guest]

Thanks Barb. I hope that I can find peace here as I am looking for some of that right now.To: Breathe-Support Sent: Tue, November 17, 2009 10:14:02 AMSubject: Re: Re: New member / recently diagnosed

Hi, and . Glad that you found us, but sorry that you need to. I have known I have this disease for a little over a year, and have gone from scared to just living my life. This forum has been a big part of getting me from there to here, and I know you will find the same knowledge, warmth, caring, and humor in this group as I have, along with many tips and many answered questions. I look forward to getting to know you both.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

From: iltopaint <iltopaint (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Tue, November 17, 2009 9:55:19 AMSubject: Re: New member / recently diagnosed

Hi , my name is and I too have been diagnosed with lung disease. I am so frightened right now and can't believe it. Will be nice to talk to others about this.> > > From: monicatejeda1 <monicatejeda1@ ...>> Subject: New member / recently diagnosed> To: Breathe-Support@ yahoogroups.. com> Date: Monday, November 16, 2009, 4:58 PM> > > Â > > > > My name is and i was diagmosed last week with Institional lung Disease. I hope i am spelling this rigt. I was told from the beginning abt lung transplant and being a good candidate bc of age and so far no other medical probs. I'm on prednisone(60 mg) and imuran (50 mg). I had open lung biopsy to confi diagnosis. Any and all insight will be greatly appreciated. This is all so new and scary to me..> > God Bless!> >

[Guest guest]

welcome

sorry you are here

but glad you found us

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: New member / recently diagnosedTo: Breathe-Support Date: Tuesday, November 17, 2009, 9:55 AM

Hi , my name is and I too have been diagnosed with lung disease. I am so frightened right now and can't believe it. Will be nice to talk to others about this.> > > From: monicatejeda1 <monicatejeda1@ ...>> Subject: New member / recently diagnosed>

To: Breathe-Support@ yahoogroups. com> Date: Monday, November 16, 2009, 4:58 PM> > > Â > > > > My name is and i was diagmosed last week with Institional lung Disease. I hope i am spelling this rigt. I was told from the beginning abt lung transplant and being a good candidate bc of age and so far no other medical probs. I'm on prednisone(60 mg) and imuran (50 mg). I had open lung biopsy to confi diagnosis. Any and all insight will be greatly appreciated. This is all so new and scary to me..> > God Bless!> >

[Guest guest]

Hi ,

Welcome to the group! I’m sorry you too suffer from this dreadful disease, but you will find a wealth of information, support, encouragement, love and humor from the members here. I understand your fear, I was scared too when I got my diagnosis. My children and I cried off and on for weeks.

I was diagnosed with ILD in May 2009 after a chest x-ray and cat scan. Then a high-res-cat scan confirmed Idiopathic Pulmonary Fibrosis with honeycombing present. I was referred to a pulmonary specialist and he tested me by blood work for connective tissue disease (none found). Also had a pulmonary function test (PFT) with terrible scores that placed me at the moderate-sever stage of my disease. He also performed a lung bronchoscopy biopsy with lavage to look for hypersensitivity pneumonitis (not found). No autoimmune diseases found.

They don't know what caused my scarring but they put me on the usual (trial) combination drug therapy of Prednisone, Azathioprine, (chemotherapy drug) used to treat autoimmune diseases, and Acetylcysteine (NAC) (a powerful antioxidant) that thins the fluids in the lungs and breaks up the thick mucus and helps boost the immune system. They are powerful drugs to try and stop the scarring from continuing to damage the lungs and prolong life. Unfortunately, only about 20% of patients with IPF respond to this drug treatment.

I was also referred to the University of Washington Medical Center in Seattle, WA and seen by Dr. Ganesh Raghu. He believes my IPF is also Familial. I had a brother who was diagnosed with IPF in 2005 and died of respiratory failure at age 43; he was at the end-stage of the disease by time he got to UWMC. My mother died at age 56 in 1982 from a stroke but also had emphysema, which they believe could have been undiagnosed IPF, and my dad died at age 76 of lung

cancer.

At my first appointment Dr. Raghu said I would be a candidate for a lung transplant too, there really is no other treatment for IPF. I have been on the medications for 3 months now with no improvement. So, I now need to start preparing (losing the weight I need to lose) for the transplant. I can't go on the waiting list until I've lost the weight. I'm also being tested for pulmonary hypertension, if I have that I know if it will effect my ability to have the lung transplant. I'll find out soon enough.

Just know that you have friends who are living with this disease and living well and we all care and understand what you're going through.

C_53_Familial IPF_5/09Washington

To: Breathe-Support Sent: Mon, November 16, 2009 1:58:14 PMSubject: New member / recently diagnosed

My name is and i was diagmosed last week with Institional lung Disease. I hope i am spelling this rigt. I was told from the beginning abt lung transplant and being a good candidate bc of age and so far no other medical probs. I'm on prednisone(60 mg) and imuran (50 mg). I had open lung biopsy to confi diagnosis. Any and all insight will be greatly appreciated. This is all so new and scary to me..God Bless!