It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lung & Respiratory Disorders / COPD Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 03-30-2009, 08:07 AM   #1
Newbie
(female)
 
Join Date: Mar 2009
Location: Texas
Posts: 1
kperry1200 HB User
Interstitial lung disease need someone to talk with please

I have been diagnosed with Interstitial Lung disease and I'm so scared that it might take my life. I have been on prednsone and it has helped me tremedously, but I know I can't stay on that drug for a longtime due to the long term effects of it. My doctor has told me that he was going to try me on imuran 50mg twice a day. I have read up on this medication and I'm really scared now. Have anyone experience or is anyone going through with this lung disease that I'm dealing with that possible could advise me on a drug that will help me and just give me some support on how to deal with this disease. I'm so depressed with the throught of having to leave my kids and I read the survival rate it 4 to 6 yrs, if i dont die from a blood clot or heart attack from the illness. Please help me someone with just some kid of positive hope. Thank you GOD bless

 
Sponsors Lightbulb
   
Old 04-02-2009, 11:55 AM   #2
Senior Veteran
(male)
 
Join Date: Jul 2008
Location: Canada
Posts: 999
harka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB Userharka HB User
Re: Interstitial lung disease need someone to talk with please

Quote:
Originally Posted by kperry1200 View Post
I have been diagnosed with Interstitial Lung disease and I'm so scared that it might take my life. I have been on prednsone and it has helped me tremedously, but I know I can't stay on that drug for a longtime due to the long term effects of it. My doctor has told me that he was going to try me on imuran 50mg twice a day. I have read up on this medication and I'm really scared now. Have anyone experience or is anyone going through with this lung disease that I'm dealing with that possible could advise me on a drug that will help me and just give me some support on how to deal with this disease. I'm so depressed with the throught of having to leave my kids and I read the survival rate it 4 to 6 yrs, if i dont die from a blood clot or heart attack from the illness. Please help me someone with just some kid of positive hope. Thank you GOD bless
Hi kperry,

You must've been having quite a difficult time these past few weeks eh? Yes, interstitial lung disease is a daunting diagnosis, but understand there are many different types of ILD, and the prognosis depends on WHY you have it. There are a myriad of different things which can cause ILD. They are divided in to whether the disease process is predominantly upper lobe of the lungs or lower lobe.

Upper lobe:

Hypersensitivity pneumonitis (from organic antigens)
Ankylosing spondylitis
Sarcoidosis/Silicosis (other pneumoconioses)
Tuberculosis
Eosinophilic Pneumonia
Neurofibromatosis
Radiation pneumonitis

Lower lobe:
Bronchiectasis/Bronchiolitis Obliterans + Organizing Pneumonia
Aspiration pneumonitis (chronic)/Amiodarone
Drugs
Rheumatoid arthritis (other collagen vascular disease)
Asbestosis
Scleroderma
Hamman-Rich (idiopathic pulmonary fibrosis)

As you can see the possibilities are many, and each of them has a different prognosis. Do you have any other health problems? Do you have any systemic diseases which have caused your lung disease? What type of work did you do before? Did the doctors think your lung disease was secondary to some type of occupational exposure?

 
Sponsors Lightbulb
   
Old 03-11-2010, 08:34 PM   #3
Newbie
(female)
 
Join Date: Mar 2010
Posts: 1
tonyaharden HB User
Re: Interstitial lung disease need someone to talk with please

interstitial lung disease was a wake up call for me also. Most important, life must continual on. Let me assure you that my disease was confirmed ten years ago and i am still going strong. I've change my life style to enjoy,a quality of life and predisone at a very high dose help me out a lot. However, diet makes a big difference in my life. Determination that this disease willn't beat me. Im' am a living testmony that life will throw you some serious curves however,we are here to make and forfill our purpose.

 
The Following 2 Users Say Thank You to tonyaharden For This Useful Post:
jazzyj1980 (07-04-2012), LisaW530 (04-05-2012)
Old 04-29-2010, 07:04 AM   #4
Newbie
(female)
 
Join Date: Apr 2010
Posts: 1
rocking clock HB User
Thumbs up Re: Interstitial lung disease need someone to talk with please

i have copd an a few inhalers for my condition u r not alone i am really scared of what may happen 2 me i have 3 lovely grandkids an want 2b around when they get married hopefully i will its not easy when u have a decease its really scary i try 2 foget some days but it dont work i live day an out with this i dont go out alot so my computer is my outlet u need 2 have somthing 2 keep u from worrying allday thats what i used do i hope this msg helps you please try not 2 worry 2 you from me my name is maggie

 
Old 05-03-2010, 01:41 PM   #5
Newbie
(female)
 
Join Date: Apr 2010
Posts: 3
miss mady HB User
Re: Interstitial lung disease need someone to talk with please

Quote:
Originally Posted by kperry1200 View Post
I have been diagnosed with Interstitial Lung disease and I'm so scared that it might take my life. I have been on prednsone and it has helped me tremedously, but I know I can't stay on that drug for a longtime due to the long term effects of it. My doctor has told me that he was going to try me on imuran 50mg twice a day. I have read up on this medication and I'm really scared now. Have anyone experience or is anyone going through with this lung disease that I'm dealing with that possible could advise me on a drug that will help me and just give me some support on how to deal with this disease. I'm so depressed with the throught of having to leave my kids and I read the survival rate it 4 to 6 yrs, if i dont die from a blood clot or heart attack from the illness. Please help me someone with just some kid of positive hope. Thank you GOD bless

 
Old 05-03-2010, 01:44 PM   #6
Newbie
(female)
 
Join Date: Apr 2010
Posts: 3
miss mady HB User
Re: Interstitial lung disease need someone to talk with please

I am so sorry to hear about your lung condition. I know how scary that is. My mother has pulmonary fibrosis and her Pulmonologist had her to take N A C 600 mg. twice a day. It's not a cure, but it does seem to be helping her. Good luck. I have said a little prayer for you.

God bless.

 
Old 08-27-2011, 02:31 AM   #7
Newbie
(male)
 
Join Date: Aug 2011
Location: Cincinnati, Ohio
Posts: 1
oshadale HB User
Re: Interstitial lung disease need someone to talk with please

They diagnosed me with ILD in November of 2009 through a CT. In January of 2010 I went to my doctor with only one question, how long will I have to live? He told me that my current CT showed no sign of the ILD; it was like I never had it. Unbelievable

I went into the University Hospital in Cincinnati with rash/blisters over 60% of my body. They put me in the burn unit for three weeks. Once the blisters subsided, they sent me home. Four days later I was rushed back to University Hospital in full respiratory arrest. That day in early July, they put a trachea in and I was put onto full life support. Next, as I was later told, I was placed into a medically induced coma. The next time I awoke, I was at the Drake Rehabilitation Center, it was mid-October. From October until the end of November, I learned to stand, walk with a walker, use the bathroom, and eat, talk, and all the other things we all take for granted. My wife tells me that I was very angry when I awoke; you see, I did not want to leave the peaceful place I existed in for the last two and one half months. So I left in a wheelchair for home, after showing the doctors I could walk 153 feet with my walker. The magic number is 150 feet, and the insurance coverage tells them it’s time to go. Now I have pain every day and a Handicapped parking permit, good for five years.

While I was in the Coma, the doctors told my wife two to three times that she should stay close, as I probably would not make it through the night. Now I am back to work and often question why I did not die, in spite of two full arrests? My prognosis is that it will take up to 10 years to return to where I was before I was on life support. I guess that what I experienced while I was in the Coma left me wanting to stay there, but that would only be selfish on my part. If it had not been for my wife, starting her job at 3am till 11am, coming to the University of Cincinnati hospital and sitting, talking, and caring for me, every day, I would not be alive to write this to you.

Do not be scared for what lies ahead is peaceful and loving and caring. I am sure that one day you will agree. I do not know why you hurt so badly, nut I do know "what that feels like". I can tell you how lucky you are to live, to feel, and to care. May peace be with you? Dale

Last edited by moderator2; 08-27-2011 at 06:47 AM.

 
Old 10-18-2011, 06:50 PM   #8
Junior Member
(female)
 
Join Date: Oct 2011
Location: San Antonio, Texas USA
Posts: 18
jdavis210 HB User
Re: Interstitial lung disease need someone to talk with please

How are you doing now? What is going on in your life? My mom had this same disease, I didn't know much about it until after she passed. I am willing to give you some advice from my experience.

Last edited by moderator2; 10-18-2011 at 07:26 PM.

 
Old 10-19-2011, 04:29 PM   #9
Newbie
(female)
 
Join Date: Oct 2011
Location: rantoul,IL usa
Posts: 1
ybnvus2000 HB User
Re: Interstitial lung disease need someone to talk with please

I understand what you are going through I started getting sick in november of 2010 going to the doctor alot I developed pneumonia in December. When the pneumonia continued to not get better in Febuary they admitted me for only a day. Well to make story short I had a lung biopsy in April that confirmed that I had interstitial lung disease associated with mixed connective tissue disease. Since then my doctor didnt know what else to do so I have been to the Mayo clinic in Minnesota that was in August. It is now getting worse. I am on Imuran but it is not working for me and made my blood count low so he just took me off yesterday. I am scared like you because I have a 15 year old son that I am afraid that I am going to leave behind because it seems like nothing is working for me medicine wise and (my regular lung doctor not mayo doctor) doesn't know what else to do. I have to go back to Mayo clinic in January. Oh by the way I am only 35 years old and have never smoked.

 
Old 10-19-2011, 06:44 PM   #10
Junior Member
(female)
 
Join Date: Oct 2011
Location: San Antonio, Texas USA
Posts: 18
jdavis210 HB User
Re: Interstitial lung disease need someone to talk with please

Quote:
Originally Posted by ybnvus2000 View Post
I understand what you are going through I started getting sick in november of 2010 going to the doctor alot I developed pneumonia in December. When the pneumonia continued to not get better in Febuary they admitted me for only a day. Well to make story short I had a lung biopsy in April that confirmed that I had interstitial lung disease associated with mixed connective tissue disease. Since then my doctor didnt know what else to do so I have been to the Mayo clinic in Minnesota that was in August. It is now getting worse. I am on Imuran but it is not working for me and made my blood count low so he just took me off yesterday. I am scared like you because I have a 15 year old son that I am afraid that I am going to leave behind because it seems like nothing is working for me medicine wise and (my regular lung doctor not mayo doctor) doesn't know what else to do. I have to go back to Mayo clinic in January. Oh by the way I am only 35 years old and have never smoked.



I just wanted to tell you how sad it makes me to hear your story. This disease goes after good people who didn't contribute to their lung health. It gets people who are healthy and nonsmokers. I feel so much for your son. Please stay honest with him. Tell him everything that is going on, because God forbid anything were to happen to you, he would just find out anyway. Prepare for the worst but hope for the best. You should write you son a letter and save it for just in case something happens to you. Tell him that you are okay and reassure him he will be too. I know it must be horrible for him to see his mom so sick. It's been a year since my mom passed and that is still all I think about. It traumatized me tremendously. Watch out for this disease affecting your heart. If your doctor tells you that they have run out of things they can do for you, then move somewhere where they have specialist in this specific disease. Do not let them just settle for the same meds that don't work. Keep your voice heard. Most of all, don't ever give up. Once you get over this hump, it will be okay. Stay strong. God bless you and your son, y'all will be in my prayers.

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
Interstitial Pneumonitis ginatufano Lung & Respiratory Disorders / COPD 7 01-05-2012 10:16 AM
chronic interstitial changes jansje22 Lung & Respiratory Disorders / COPD 2 10-02-2008 06:06 AM
anyone have dermatomyositis,interstitial lung disease AND mycobacterium chelonea vickie51 Myositis 0 09-13-2008 11:15 AM
Interstitial lung disease? what Now? sabrina1977 Lung & Respiratory Disorders / COPD 3 06-24-2008 11:14 AM
rheumatoid arthritis, Interstitial lung disease, pulmonary fibrosis smileyshea Lung & Respiratory Disorders / COPD 7 03-26-2008 02:40 PM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 07:07 PM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!