Mayo Clinic Connect
Is there any one out there that has PF?
Welcome to Connect, @penlee,
Thanks for sharing your history; we’re glad you joined this group. We have some other discussions about pulmonary fibrosis that you might interest you as well:
– IPF and Pulmonary Rehab: https://connect.mayoclinic.org/discussion/ipf-and-pulmonary-rehab/
– Stem cells for Pulmonary Fibrosis: https://connect.mayoclinic.org/discussion/stem-cells-for-pulmonary-fibrosis/
You might also enjoy viewing these stories shared about the Harmonica therapy and the Breathless Choir for people with lung disease: https://connect.mayoclinic.org/discussion/harmonica-therapy-for-chronic-obstructive-pulmonary-disease/
I do remember reading about the forest fires and how much of Oregon was wrapped in a haze; did you have to leave or evacuate at any point, @penlee?
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No we did not have to evacuate. The smoke was terrible but the fire were a distance away. Thank you for the above links. I have ordered the mask discussed in one. Living where we do I am collecting a few different ones.
I have Pulmonary Fibrosis from chemicals. Is this just for IPF or can I with PF join in? Alan
Welcome, @alancady. You can certainly join the conversation. As you probably know, “idopathic” only means that the cause of PF is not known. You say that in your case the cause is known, namely from chemicals. What exposure do they believe led to your developing pulmonary fibrosis?
I would so love to run again, I used to run 6 miles a day 6 days a week, just climbing one flight of stairs winds me so very much. I meditate on occasions however I haven’t got to the level of taking deep breaths yet (when I do I begin to cough). thanks for the input, I’ll continue to work on it.
Were you around Danang Vietnam? I was a runner and ran around both inside the fence and outside for a change. I also ran in Japan where I was stationed at Atsugi as well as around a golf course near our church. I quite often got badly beat by another sailor and he was stationed on a ship. He just ran wherever he could. He was one fantastic runner. One thing I noticed was the longer I was running in Vietnam the slower I ran. I did not think a lot on this in 66 to 68 but there was a lot of A.O. sprayed on the perimeter of the base. NOW I understand and I have the chemical Agent Orange to make it tough luck for me. I cannot longer walk fast outside in hot weather it is even worse.
I only found out after I had my medical records sent to me in early June. I had nearly 1700 pages to read. I found out about other things before 2014 but at 2014 to 201`7 I really found out a lot. The VA found the fibrosis in my lungs but never told me or offered many treatment. Including the new drugs that came out around 2013? They just took biopsies on different parts of my lungs to find out I had some benign spots on my lungs. 3 Biopsies to be correct and THEY also wanted to do another partial open
chest biopsy which I did not accept. NOW what do I do? I had 3 years of this stuff working on my lungs and no on gave me any advice from the OKC VA. I am now seeing a private Pulmonologist and he just. was able to start me on one of the drugs. BUT he doesn’t think now that I am past 71 years I will not get a lung transplant again THANKS VA.
I was told by someone at the Mayo Clinic in Minnasota that they would take cases and look at them on their own findings. That is better than what I was expecting. I’m done. Good healing and breathing to all of us.
3 years in Vietnam and flying a lot of the time. BUT I spent more time on the ground that in the air. I love ed the flying but I also liked to run when I could. I was running on the periphery and that is where. they did a lot of truck ‘spraying’ and the dioxin (Agent Orange) was in everything we drank, showered, slept, ran, breathed all the time on the ground. AND some of the lovely stuff always got to sneak into our planes. I also had cataracts removed in both my eyes before I was 35. I have just started to have my fingers shake when I am eating and getting more frequent headaches, I am a bit shaky and the walker I have helps as well as the 24 hour Oxygen, and I have lost about 80 Lbs in the past 4 months. UNTIL I found out I had P F I did not mind the weight loss. I was looking a bit too skinny. BUT now I will be easier to move around by everyone that will help me at home. May they find lung for all of us that want them and a comfortable life to the end for those that do not want a transplant. God bless all and the Mayo Clinic.
Thank you for your service sir, and I know the goog Lord will take care of us who have I P F.
Liked by kturchin
God will be with us in this fight also. I too want thank everyone who served and that all of the caregivers will have all of the strength they will ever need.
Add an amen for you my brother and all those that are having health problems that the VA will not help with. God bless us all
I was in the Army Artillery at Fort Sill, OK. from Sept 1964 through about October 1965. I was a safety officer in a 105MM Howitzer Battalion. At the end of a day of firing, typically from about 7:30 am to 4:30 pm, 5-6 days per week, I would have a 1/2 to 3/4 ton truck filled up to the seats with unused powder, which we had to burn on a range road. I am sure we fired many more repackaged WWII artillery rounds in a typical day then my unit did when they were deployed in Viet Nam. (I, one other LT, 6 EM, and a Sargent were left behind,) I also was also safety officer for two 2-week summer camps at Camp Chaffee, AR. Every night, after a full day of firing, I had to polish my corroded brass belt buckle. There was no hearing protection or lung protection. I was diagnosed with Pulmonary Fibrosis in May 2009. My doctor said a recent CT scan shows the fibers in my lungs have disappeared, but I still have COPD, and loss of high pitch hearing. I have never been a smoker and my life occupation has been an Insurance Agent working in an air-conditioned office. Other than my army time, I have never worked in any hazardous environment. I have passed my life expectancy (3-5 years) and am still kicking.
The VA says neither condition is service related. My doctor says he cannot relate my artillery time to my condition. That is why they call it “IDIOPATHIC” (cause unknown). Go figure!
Hi, @1jonwilcox. Thanks for posting here and telling us a bit about your background. Welcome to Mayo Clinic Connect.
As you can see, I’ve moved your post over to this existing discussion of pulmonary fibrosis since you mentioned this diagnosis, hoping some of the members here might have some insight on what you’ve shared. I’m sorry to also hear you’ve had COPD and some hearing loss.
Exciting to hear you’ve surpassed your life expectancy!
What symptoms would you say are bothering you the most recently?
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?
This is @1jonwilcox, I had PF diagnosed in 2009. I am now passed the common life expectancy for PF. I am also a type 2 diabetic with mild high blood pressure and neuropathy on my right side. In 2007 I had a very mild stroke, affecting my optic nerve and the left side of my face. At the same time, I had a double bypass. The stroke got me to the hospital and saved me from a heart attack. They discovered the need for the bypass when I went in for the stroke symptoms.
I suggest you do deep breathing exercises. Breath in slowly until it is impossible to inhale anymore even if it is mildly painful. Hold it as long as you can. Then breath out slowly thru pursed lips until you cannot push out anymore. Do this 5 times a day, the last as your head hits the pillow. It helps me clear my brain and go to sleep, You can use a machine in addition and my doctor says to do that 10 times a day. When I do it, I do 10 times in succession. This has helped me immensely. My last CT Scan showed the fibers in my lungs are gone, but I still have COPD. My lung doctor says he has NEVER seen fibers disappear in any other patient. I have nasal congestion, mostly in my left sinus, which drips into my lung. Every night I use NeilMed Nasal Rinse squeeze bottle to clear my sinuses before bed. I also use a Fluticasone Propionate nasal spray and then Symbicort 160/4.5 inhaler with an AeroChamber plus Flow-Vu devise.
Good luck. Worry only about that which you CAN control. Jon Wilcox
Liked by Lisa Lucier, Connect Moderator
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