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Posted: Mon Jul 26, 2010 7:37 pm

Have you ever thought that you may develope IPF????..It is not catching at all...and I know that...but I panic when I think I feel short of breath or asthma flared up...This is crazy...I saw the death Matt died and now Billy...IPF scares me...this is a terrible disease...Hugs-KatC

Joined: 12 Jan 2010 Posts: 558 Location: Michigan

Kat, you have been under alot of stress and when you are around people with terminal diseases you see the worst of it and you have lost two people who you loved and watch them suffer. Of course you are going to think I don't want to die like that. If you panic you could be hyperventating. This is a devastating horrible disease but we have no control over what road we go down! As for me I want to carry on and not be mad or bitter because time is short...........................Kat, you know it is going to take time to heal and I will be praying for you, Verba and family.

Joined: 08 Mar 2006 Posts: 374 Location: NJ

Dear Kat, MaryJ is right about your breathing patterns. But also if you're not eating right you may be slightly anemic which can also cause shortness of breath. We love you, Kat, and wish more than anything that you weren't going through this pain and suffering. Just picture the two of them together with big smiles on their faces and know that they aren't having any problems any more. God bless you, Joanne

Joined: 20 Oct 2004 Posts: 707 Location: Atlanta georgia

I have thought the same thing. I get short of breath at times
It's really bad on stairs and carrying things and sometimes I get weak and the shortness of breath starts and I have to lean against a wall. I think it is more a heart issue as my mom had rapid heart beat and I usually can feel it beating out of my chest.
My chest x-rays are clear. My brother is constantly coughing and bring up stuff. I worry about it but I have a plan.
Since I don't have a family to count on now that mom is gone, if I should get IPF I won't let myself get a transplant and I won't let myself suffer. I will pray that I go to sleep one night and never wake up. I'm too chicken to take my own life, but I will always remember the panic in my mother's eyes when she couldn't breath. I can't face that alone and I promise myself I won't let it happen to me. I don't have the support and I wouldn't make it long on my own anyway. I don't fear death... I really want to be with my mom again anyway.

Angelina

Joined: 12 Jan 2010 Posts: 558 Location: Michigan

angelina, my mom died from IPF also and I know that panic look. What makes you think you or your brother will get IPF? Has anyone esle in your family had IPF? You said your ex-rays were clear, what about your brother? ...................I know you miss your mom alot but I'm sure she would not be happy if she knew you are getting so stressed about all of this. Stress can make you sick mentally or physically.......................Take care of yourself and know we all care.

Joined: 20 Oct 2004 Posts: 707 Location: Atlanta georgia

I really think that my Grandfather on my mother's side had it.
My brother is autistic and has low functioning retardation.
He lives with my dad and my dad won't take him to the doctor, he just thinks that my brother has a lot of phlghem. I brought my brother to Atlanta and had Emory's ILD clinic look at him and they didn't see anything, but my mom's lung honeycombing started in the late 1980's and the doctor told her it was because she didn't take deep enough breaths. I only worry because I get short of breath with extertion quite a bit and I am not heavy. It is usually when walking upstairs, sometimes even walking to the kitchen when I am tired. My mom was so afraid of water and drowning and it angers me that she died because she couldn't breath. I've had the air knocked out of my lungs one time and that was the strangest sensation as they filled back up. I didn't panic I just went with it. You never know what will kill you. I just feel that since my mom's dad might have had it and my mom had it who knows what will happen to me.

Joined: 12 Jan 2010 Posts: 558 Location: Michigan

angelina, I don't know if you know my history but my IPF is Familia and in the genes. My cousin and I now have IPF, #13 and 14# in the last few generations. It goes back to my mom's great grandfather also. I am not going to have a tx. ......................I am sorry to hear about your brother's condition, that must be tuff to handle. The doctors told me when my mom died that I had a 50/50 chance of getting it. Well I proved them wrong it's a 100% proof positive. The doctor told me to get a chest ex-ray every year so I hope you will do that............................I can't believe what your mom"s DR. said to her about not taking deep enough breathe's, I don't know if that makes any sense to me but I'm not no DR either. If you keep having shortness of breath going up stairs or get a dry cough please go get checked out. Your friend!

Joined: 26 Aug 2009 Posts: 83 Location: Washington State

My daughter recently broke out in hives. Everywhere. Dr.s could not figure out why and did a lot of tests. They finally decided that perhaps it was an "auto-immune" reaction and did several other tests, including a chest x-ray. Well Bryan and I had a minor melt down. What if she has IPF caused by an auto-immune disease? Could she really have what he has? Is it caused by this 100+ year old house we have all lived in for 10 years? She's not his daughter by blood, so it wouldn't be familial. But yeah we panicked. This disease is so very vicious and unforgiving, we fear it like the boogy man - absolutely.
Either that's normal or we're all insane. (Daughter is fine by the way, x-ray clear)