Pulmonary Fibrosis Support Group

Heather, I was also just diagnosed with pf last week and I have also spent a lot of time
crying. (the first three days-that's all I did)
Then I decided I better get a little pro active
and I am doing research with a vengence. I found this site while researching and like you
I read every message. The people here are
amazing I have learned from them and gained
strength and hope. We must not give up hope
Heather. There are some clinical studies
taking place that might be showing some promise
and who knows when some wonderful day there
might be some medical advances that will help
us all. I have also found other online support
groups if you are interested. It helps sometimes just to know we're not alone. I will
keep you in my thoughts and prayers. lomo

Heather,I also have IPF
I was diagnosed in 2007,went thru the crying and depressed times,but You need to fight this with everything You have left in You.
Someday they will find something that will help All of Us with IPF.I was told That Everyone reacts different to This Health problem.I have it in both My lungs,We take everyday and live it to the best We can.Oxygen helps Me get around and makes it more easy to breath.
So try and stay strong and We are here for You.

Thank you so much, Iomo and SmallFry08, for your kind words. It really does help to know that I'm not alone in this. I would love to learn about more online support groups.

I actually ended up in the ER yesterday because I was having chest pain, and the ER doctor and nurses put me on oxygen, gave me a breathing treatment, gave me an IV anti-inflammatory, did an EKG, and took chest X-rays (I apparently was breathing a bit rattly).

The doc said there was some inflammation and infection going on in my lungs, and gave me Rxs for prednisone, an antibiotic and Vicodin to help with the pain. He was very nice and actually made me feel a bit more hopeful about my condition.

I noticed the chest pain went away when they put me on oxygen, but it could have been the IV anti-inflammatory as well. Does oxygen help with the chest pain?

My best wishes go out to all who are suffering with PF, and thanks for making me feel better!! : )

Heather,There is times when I have chest Pain,and it can get very painful,I get inflamation in My lungs often.I take predisone daily an also use oxygen at night and when needed during the day.I keep vicodin on hand at home all the time.You need to ask Your doctor about having breathing treatment at home.I also on Imurin daily.
So hope You get feeling better real soon.

I'm worried about the side effects from taking prednisone long-term. Aren't there any other anti-inflammatory drugs available that don't cause so much harm? As far as being on oxygen, can you exercise? I'm 75 pounds overweight and want to be able to do some sort of exercise so I can lose this weight. Can people exercise while they're hooked up to oxygen?

What is Imurin? So many questions, I know. I guess this is the time for me to reconnect spiritually to a higher power and ask for strength, not just for me, but for everybody who's dealing with this doo-doo!

And thank you, SmallFry08. Can I ask how old you are, or is that too personal a question?

I also am interested in finding out how many out there who have PF were smokers. I'm having a really hard time quitting and sneak a couple of cigarettes a day from my roommate. I feel so guilty every time I take a puff, like that one cigarette is going to make me die. I've tried everything: Wellbutrin, Chantix, the patch, the lozenges, the gum. Nothing has ever worked, not even getting the PF diagnosis. Sigh......

Hi Heather and Small Fry! I do not have IPF but feel as if I did as I lived it with my Mom for 18 months. Exercise!! Yes, you can exercise and my Mom was in a physiotherapy program on treadmills and stationary bicycles and using the bands to stretch etc. The difference in her from the time she wasn't exercising to after was so incredible you wouldn't have known it was the same person. I am not an expert on how long, how fast etc but I would suggest that you start asking questions from your medical professionals about programs for you in your areas. Don't sit and do nothing now in the early stages of your disease, start looking into lung transplants and the process for getting on a list!! In Canada (I don't know where you live) it takes upwards of a year to get on the list and then the waiting begins.

I remember well how we all felt (especially Mom) when she was first diagnosed ... all she did was cry and all we did was try not to. Please!! start looking into transplant options as there isn't any cure for IPF.

I am sending a great big hug out to both of you!! Stay strong and for goodness sakes QUIT SMOKING .. don't think about how hard it is but think about getting a transplant because in Canada you cannot even be considered for a transplant if you smoke!!

I read another person's comments that their spouse was not qualified for lung transplant because he is diabetic, as am I. But thanks, Kelikel, for the tip on exercising.

I have an appointment with my primary care doctor on Monday and will ask her a zillion questions, including whether or not there is some type of therapy that can help me exercise without losing my breath. I'm also limited to what kind of exercise I can do because I have fibromyalgia and was told by the rheumatologist that I can't do any weight-bearing exercise. He said that basically water aerobics and Pilates are all I can do (I have bad knees too, so I can't ride a bike or walk). But I do have a Tony Little Gazelle in my apartment which is totally non-impact, so I could probably start using that. Up to this point, it's pretty much been used as a coat rack. Dur!!! : )

I don't know how long a wait list there is for a double lung transplant in the U.S. (I'm in north Idaho), and if I am even eligible because I have diabetes (Type II, which is fairly under control with Metformin), but I will certainly check it out. Thanks for the tip. I'll start researching now!

Heather,
I sympathize with you and completely understand your emotional upset. It sounds like a lot of people go through this crying and panic when diagnosed. It's been a few days since you first posted. How are you doing now?

Toni