Pulmonary Fibrosis*

Posted by tetreaulta5 @tetreaulta5, Feb 25, 2012

Is there any one out there that has PF?

@alexander

My name is Larry – I have recently been diagnosed with Interstitial lung disease, which I think is the same thing. My condition improved when I quit taking statins. I started taking the statins after a heart attach about 8 years ago.
My shortness of breath and congestion are still there.
Have you found anything that helps or can relieve?

Jump to this post

how are your scans looking now? Do you get out of breath? I am amazed your fibrosis is gone as well

REPLY

Yes I just found out I have it was very upset with what I had read about it.just had a lung biopsy what come next

REPLY
@1687gussy

Yes I just found out I have it was very upset with what I had read about it.just had a lung biopsy what come next

Jump to this post

Welcome to Connect, @1687gussy. It is a shock to be diagnosed with pulmonary fibrosis. Lung biopsy is not always necessary to confirm PF. Other members here can share their stories about what happens after diagnosis.
You might find this article helpful: 5 Pulmonary Fibrosis Questions for Your Doctor – https://pulmonaryfibrosisnews.com/2017/01/23/5-pulmonary-fibrosis-questions-doctor/

Did your doctor talk to you about lifestyle change or pulmonary rehab?

REPLY

Hello. I’m new to the lung group. In 2015 I was diagnosed with ILD. The dr.’s explained this was Idiopathic Lung Disease – no known cause, no cure. Now I think doctors use Pulmonary Fibrosis. PLEASE correct me if this is incorrect. I’ve been to several doctors since then. The second one thought it was Hyper Autoimmune Pneumonitis and put me on Dapsone and Azathiaprine. I was on that for two years. Found another doctor closer to home. He’s back to the first diagnosis – ILD – and wants me to take Perfinidone. Based on possible side effects, I declined. I’m a 68 yr. old female with chronic, inoperable back pain, who sleeps with oxygen and sometimes carries a tank with me. My question to @1jonwilcox and @paulallen is – are the side effects worth taking Perfinidone? When not in the grips of the side effects, can you breath more easily. Thank you. @cognac

REPLY

i have been taking perfinidone for 2 years. it does not cure pf,, but slows it down. at first i had some nausea and tiredness but it wasn’t really bad and went away after a few weeks. you have to take after eating. the alternative is an earlier death.

REPLY

can anyone tell me what and where does all the mucus that builds up in your lungs overnite comes from and is there any thing I can do to help releave the amount. THANKS FRANCKO

REPLY

@francko and @robinson, I moved your question about mucus building up overnight to the Pulmonary Fibrosis discussion group. Francko asks: where does all the mucus come from and what can be done to reduce or relieve it? I hope others have some thoughts about this.

REPLY
@colleenyoung

@francko and @robinson, I moved your question about mucus building up overnight to the Pulmonary Fibrosis discussion group. Francko asks: where does all the mucus come from and what can be done to reduce or relieve it? I hope others have some thoughts about this.

Jump to this post

@robinson For some of us (me) the mucus is an outcome of lung problems and over-supplied eosinophils. I have had this all my life. Anyway, most drug stores, big box especially, sell little bottles of mucus pills for $1 or less for about 10 or so little white pills. I buy mine at Walmart or Bi-Mart for 88 cents. Take one about every 12 hours or so.

REPLY

Do you know the name of the pills THANKS FRANCKO

REPLY

@francko Harry, The pills are simply called “Mucous Relief”. They are “guaifenesin expectorant”. The bottle is in a little box, about 2.5 inches tall and 1.25 inches square. 15 tablets. Just called “Pain Relief” It is their most effective simple pain relief. The shelf stocker usually puts both of them on the bottom or top shelf so they won’t sell too many of them. There is also a little of pain relief, about the same size. Walgreens and many others stock them. It is the same story as about the insulin. You have to ask for the cheapest medicine they have.

REPLY

I have read in the group info about lung flare ups with pulmonary fibrosis. Being new at this can some one tell me what happens and do you end up in the hospital. Thank You FRANCKO

REPLY
@francko

I have read in the group info about lung flare ups with pulmonary fibrosis. Being new at this can some one tell me what happens and do you end up in the hospital. Thank You FRANCKO

Jump to this post

Hi Francko, I moved you message to the main discussion thread about pulmonary fibrosis, so everyone will see your question. Francko asks about lung flare ups, what are they? What happens during a flare up? And do you end up in the hospital?

Francko, have you or do you think you have experienced a flare up or are you preparing yourself for the possibility?

REPLY

I am new too the group and am the caregiver for my husband. He is 84 and was a farmer. Three yrs ago he was diagnosed with severe IPF and given the prognosis of 1-3 yrs. Last year he was hospitalized with bilateral pneumonia. He pulled through and is continnuing his battle. One of the mistifying experiences that he has often is dizziness. His doctors seem mistified with this problem.. I will be very interested to learn if anyone else suffers from he dizziness. My name is RoseMary

REPLY
@rosie82

I am new too the group and am the caregiver for my husband. He is 84 and was a farmer. Three yrs ago he was diagnosed with severe IPF and given the prognosis of 1-3 yrs. Last year he was hospitalized with bilateral pneumonia. He pulled through and is continnuing his battle. One of the mistifying experiences that he has often is dizziness. His doctors seem mistified with this problem.. I will be very interested to learn if anyone else suffers from he dizziness. My name is RoseMary

Jump to this post

While don't have IPF I do have GOLD Stage 3 severe COPD. I'm an automotive engineer so by no means a doctor not even close. I would however believe that the dizziness is due to low oxygen levels due to his condition. I would think this would be common towards the later stages, I get dizzy from time to time and if I oxmeter it usually says 70% or below. You can by these meters pretty cheap on Amazon . Not sure this helps at all but may be something to look at and an explanation.

REPLY

Thank you for your help. Bob's oxygen drops quickly with exertion of any kind but as soon as he sits down within 4 minutes or so it returns to normal

REPLY
Please login or register to post a reply.