Mayo Clinic Connect
Is there any one out there that has PF?
I WOULD LIKE TO TALK TO PEOPLE THAT HAVE PULMONARY FIBROSIS
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Hello Harry, I have had pulmonary fibrosis for about five years. At first with no symptoms I didn ‘t pay much attention to it. Then the breathlessness and cough and declining pulmonary function I woke up. I’ve been taking prednisone and Mycophenolate for three months and feel better, cough less. I also walk, practice yoga and do some fitness exercises. Is this helpful? What other questions do you have? Best wishes.
Liked by Colleen Young, Connect Director, Linda, alumna mentor
These comments are from back in 2016! Is there anyone out there that has recent treatments for IPF? What do you know about stem cell therapy as a relief of from this deteriorating health condition? Earl from Ohio
Hello Alan, you certainly are in a frustrating situation. I hope you connect with the Chest Med clinic. Take care of yourself eating well and exercising as you are able. I always find getting outside in a pleasant place like a park lifts my spirits.
Liked by Linda, alumna mentor
Thank you penlee, I will wait until I hear from the very helpful young man in the Chest Med clinic today. After that I hope to have some answers. I will post back what I find.
I just believe exercise is not a smart solution at this time, except if it is recommended by your doctor. My advice as I dealt with many patients with this diagnosis and treated them as CRT and now I am RRT. My advice is that visiting your doctor is necessary to live the rest of your life with comfort, effective use of times, and less cost and grief for you and your family, as your doctor is the best professional who can explain the level of your complaint. Good luck and wish you getting well soon!
My mom has been diagnosed with pulamonary fibrosis and lupus. At this time she is on oxygen. I’m trying to understand what the disease is and how it affects the body/organs.
I read the articles. My mom has all those symptoms. I ‘ll share what i know about my mom’s condition. She was released yesterday from the hospital with a servere bout of pneumonia. Her oxygen level could not be found whet i got her to the hospital. She’s on oxygen 24/7. She cannot do without the oxygen. She is always panting like a dog been running hard. She has pain in her back. According to her, the doctor thinks that the oxygen is backing up in her lungs, not able to pass through freely. Her lungs are serverely scarred. When she was recently hospitalized, the doctor wanted her to be on a b-pap (i think that is the name) machine. I know mom has had pneumonia at least 3 times this year. She also has lupus and i think, congested heart failure???? She once told me that her throat walls are thin. I suppose that comes from the hacking cough she constantly has. She always cough up mucus. This has been going on for awhile (the hacking cough). As far as the stages of this disease, is there other systems to look for as the last one. I’m not a doctor nor do i try to be, my mom is 73, it seems as though she is going down rapidly. What can i do? Its so hard to sit by and feel helpless. I just want to know if there is some kind of miracle drug out there somewhere.
IN OCT 2016 I WENT INTO THE HOSP. FOR A BROKEN FEMUR WHEN THEY TOOK THE CT THEY SAID THEY SEEN SOMETHING ON MY LUNGS. THAT TURNED OUT TO BE A SMALL AMOUNT OF CANCER BUT THEY ALSO SAID I HAD ALOT OF SCARING THAT TURNED OUT TO BE PF I AM OLDER AND I HAD A VERY GOOD LIFE.MARRIED 60 YEARS TO MY HIGH SCHOOL SWEET HEART HAVE 3 GREAT CHILDREN 5 GRAND CHILDREN AND A GREAT GRANDCHILD COMING IN APR.THAT IS THE PART THAT BOTHERS ME THE WORST I JUST DONT WANT TO LEAVE THEM. SO THAT IS WHAT I NEEDED TO TALK TOO I KNOW WHAT THE OUTCOME IS BUT IM NOT SURE WHAT I HAVE TO LOOK FORWARD TO AND HOW LONG THANK YOU
THEY FOUND THAT I HAD PF WHEN I WENT IN TO GET A CT OF MY LEG ON 28 DEC 2016. I WAS REALLY TAKEN BY SUPRISE I AM JUST ABOUT THE AGE OF YOUR MOM THEY ALSO FOUND SOME LUNG CANCER IN THERE.THE HARD PART IS YOU KNOW SOME PEOPLE HAVE BEAT LUNG CANCER BUT SO FAR I HAVE LEARNED THAT NO ONE HAS BEAT PF I AM SORRY THAT I CANNOT GIVE YOU MORE INFO BECAUSE I JUST DO NOT KNOW BUT I AM STILL SEARCHING AND I WILL TRY TO DO THE SAME. GOD BLESS YOUR MOTHER AND I PRAY THAT SHE GETS AT LEAST A LITTLE BETTER SHE IS VERY LUCKIE TO HAVE YOU BY HER SIDE THAT IS HELPING HER MORE THEN YOU WILL EVER KNOW FRANCKO
Liked by Colleen Young, Connect Director
I am having the same thoughts, I am only 71 but I am going to be alright either way. But my wife is not to keen on s lung transplant. She is afraid that it may even shorten my time here. My pulmonologist has my set to make an appointment for an evaluation for the surgery. She is not keen on that either. Like O said., I am OK.
Well, I saw my pulmonologist and took the CD of my CScan and the report, listing mild pulmonary fibrosis. The pulmonologist said not to be concerned with the results of the scan and that it was from scarring from repeated infections. I’m still concerned! Any suggestions? Am I making a mountain out of a molehill?
How about a new Pulmonologist? The
I recently found out that my mom had Pulmonary fibrosis over the years I have watched my mama suffer which I thought was just a hacking cough. For some to say not to worry that’s bull. You need to get a 2nd opinion. I only learned about my mom condition a week ago, but she has been sick for some time. She has been going to several doctors in FL and GA. My mom can barely get around due to servers shortness of breath and constant coughing. I talked to her today, her voice is so weak, she strain to talk. I don’t wish this on anyone. Mom has never smoked. As I continue to research this illness, I’m assuming her PF is a result of her misdiagnosis of lupus. I suggest to you, don’t wait until it’s too late. To everyone who has given me encouraging words thank you.
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?
Did @rayhastings ever post the site for the gov. drug trials
@francko and @alancady, you both bring up a very important topic here that I would like to see as a new discussion in the Lung Health group. Living with a life-limiting disease can be very hard for family members to accept even when you’ve accepted and made peace with the reality of limited time.
Might I suggest that you start a new discussion? Here’s how:
1. Go to the Lung Health group homepage here: https://connect.mayoclinic.org/group/lung-conditions/
2. Click the START A DISCUSSION button.
3. Enter a title. Something like “Living with Limited Time: Let’s Talk about It.”
4. Write your message. You can even repeat what you’ve written in this discussion.
I think this will be a welcome discussion on Connect.
Here is the link to the Clinical Trials database https://clinicaltrials.gov/
THANK YOU FOR THE INFO FRANCKO
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