Mayo Clinic Connect
Is there any one out there that has PF?
PF as is cleared form your doctor’s words is not clear, and as I know pulse oximeter , breathing tech, and physical assessment are very helpful in determining the stage and the capacity of the lungs and breathing norms, but is not the last determined solutions. As RRT from my experience I believe surgery would help, but first your doctors the one who will decide it for. I know that the post is posted early back to (2012), but it may help others who are in similar situation. Good luck!
Liked by Lisa Lucier, Connect Moderator
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?
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II am Paul and I am taking Perfinidone 9 capsules daily. It has slowed the progression. I have a problem breathing after any exertion. Nausea and fatigue are bad side effects.
Hi, @paulallen, and welcome to Mayo Clinic Connect. Thanks for sharing what’s helping with your condition.
Have you found any ways to counter the medication’s side effects of nausea and fatigue?
Fortunately no nausea. I have not found a way to combat the fatigue. It is with me all the time. I forgot to mention in my last post. You must avoid breathing anything but clean air. No breathing near smokers (hold your breath as you walk by them.), or in rooms where smokers have smoked, no perfumes, pre-shave or aftershave. Only paint with Zero Voc paints and any other type of painting, staining, etc done outside and downstream in the air flow, or if indoors, with an open window on either side of the work area and a fan to exhaust the hazardous air. Also,stand on the windward side of the gas pump when filling your car, etc.
I have the fatigue but not the nausea. Fatigue seem to stay around.
hi any one out there with this problem,? i have had for several years now, bad cough, now my right side started to hurt, doc gave a cat scan, it shows a spot on my lower left lung i have an appointment sep 5th at mayo hope they can figure this out i also have heart problems, two years ago open heart valve repalced now pace maker and diffib meds have caused some cough but changed and now little better should i worry about the spot ?? i fear it is cancer but they didnt say that ok thnaks.
Sorry I’ve gotten worse fibrosis in the last year and a half twice
I am only 9 months into IPF. Your post was very helpful and informative. Thanks !
I just received the results of my CT scan through my patient portal email. I haven’t seen my doctor yet who ordered the scan. I have had a terrible cough for years and take a lot of prescription meds for asthma. I had pulmonary embolisms in January 2015; and had a follow up scan in July 2015. At that time, my embolisms had been absorbed. There was no mention of scarring on the report from that scan. Of course, I am freaked out by what I have read on the medical web sites. My fibrosis was listed as “mild.” I was happy to find this group.
Liked by Jamie Olson
When I first saw and read my CT reports this June my first one also said my pulmonary fibrosis was minimal that was the 2014 report. But the VA never felt it was important to mention. Same thing for the other 2 CT scans. Never said a thing to me about the pulmonary fibrosis that had gotten worse over time.
Now I have a lot less time to think about a lung transplant. That is a big decision to make. Alan
What a shock to get this diagnosis via a patient portal! I hope you will be seeing your doctor soon. There may be some treatment for you that may slow the progression or put you into remission. This group has been helpful to me as I Have not connected with anyone in my town with pulmonary fibrosis.
Liked by Jamie Olson, browneyes60
@browneyes60, Hello and Welcome to Mayo Clinic Connect! We are happy to have you here and glad you found us too!
In my opinion, I think that’s the one drag to the patient portal- reading information and not having the ability to talk with your medical professional immediately. If you are going to continue to read on medical web sites- just make sure it’s a reputable source. Otherwise this may be a good time to keep yourself busy and keep your mind busy at least until you can speak with your provider and get details about your scan. Normally what happens is the scan is done then the Radiologist reads the scan, writes a report and then it’s released for review. Be content knowing that your provider will call you as soon as he or she reviews your scans and report. (I know waiting is the worst)
If you don’t mind, keep us informed of what your provider says. We look forward to supporting and helping you along the way. Post any questions and or thoughts you have. The wonderful thing about this community is….what ever you post here turns around to a learning experience for other future members.
That’s tough when you don’t get the information you need to make decision on your health. The patient portals seem to be helpful. I would be interested, if you feel comfortable saying, what your decision making process is about getting a lung transplant. It is a big decision.
I was diagnosed moderate last October at Mayo referred me to lung transplant center I’ve decided not to do that mentally I don’t think I can take the wait to see if I get an organ match on time and the wondering after if I’ll reject it I’m 54 I have had a hard life or I feel tired of fighting so I’ve decided against a transplant it’s been a year and a half since respiratory failure and the PF diagnosis with organizing pneumonia my lungs have gotten a bit more scarring and I feel crappy most of the time fighting lung infections I’m just living day by day to the fullest and looking into esbriet as a possible drug to try
I like your attitude of living day by day to the fullest. That’s my intent also to make that choice of being there each day. Thank you for sharing some of your thoughts of your difficult decision about getting a lung transplant. I hope you can try the esbriet and it helps you feel better.
Liked by Colleen Young, Connect Director
Thank you I wish you well also
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