Mayo Clinic Connect
Is there any one out there that has PF?
My husband has IPF. he is on perfidenone 3 three times daily (9 in total). Next week he has appointment to discuss using Nintedanib instead. Would appreciate comments as to advantages (if there are any). Have read that Nintedanib blocks the effects of important proteins that tell the lung to make scar tissue.
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I have seen the same reports and have not seen anything that show any measurable improvement based on user comments.
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?
Hi @rayhastings, welcome to Connect.
As a security feature, first-time posters are not allowed to post URLs. This helps us minimize spam. You will be able to post the link to the newsletter in a couple of days. I encourage you to do so, as it will certainly interest the others here.
Do you have IPF? Have you had a transplant?
I went in the hospital for what I thought was a heart attack it turned out to be a false alarm although when my dr came in to discuss the cat scan told me I had IFP kinda through me for a loop I have a consultation set up for later this week and a second appointment set up in 5 weeks which I believe will be for another c scan or image to see the progression he did mention that it is very early because I have no symptoms. I have acid reflex for the past 10 years or so.
Welcome Donna (@kelloggk).
How IPF progresses and how fast it progresses is different for every person. You can read more about what to expect as it progresses from this article https://www.lungsandyou.com/facts/ipf-progression
I was wondering if anyone in this group has asked their doctor about pulmonary rehabilitation? I was just reading about it on the Lung Association site http://bit.ly/2mo2Mmc
Liked by tula
@agullotti, getting a new diagnosis like IPF can be a shock. Here’s more information from Mayo Clinic http://mayocl.in/2jAEmAi I’m glad you found Connect to ask questions of people who are living well with IPF. What’s your biggest concern?
@loisblo, what is your exercise of choice?
I mainly walk but that is getting more and more difficult. I am having a bad time now not able to breath even with o2 especially at night. I am having to use O2 more during the day also. These “attacks” seem to be weathered related as it is cold and raining now. Does anyone else have trouble when it rains?
FYI the doctor has to prescribe the rehab for insurance coverage. In addition if you’re on medicare you only get so many weeks of rehab covered. I have had pulmonary rehab on two separate occasions in a two year period. It consisted of watching several videos of pulmonary (issues) on breathing properly to get the best use of my lungs. I did some light weight training, walking and biking (at a snails pace) to start with so they could measure where I’m at in my lung capacity. From there we progressed in intensity to get me to my optimum breathing without O2 (in my particular case). Several people did similar rehab routines but with O2. Upon completion of my routine they would use a percussion tool to vibrate my back and loosen the sputum. I found this to be quite helpful. The reason I had stopped the first time is that I fractured a rib coughing and it was to painful to do almost anything since I coughed so much. It took months for it to heal where I could go back to rehab. On the second time around they used the hand cupping method on my back to loosen the sputum, which (I think) wasn’t quite as effective as the percussion tool. They were somewhat apprehensive about me pushing myself to the limits to where I’d get winded and start coughing. I understand that and that was why I discontinued my rehab for the gym. I saw a few patients who started rehab on my first time around and they could barely walk even with the assistance of a walker. When I went back the second time I was astounded at how much better the patients were and the progression they made. Where I live there aren’t many pulmonary rehab places around and the closest location was a hospital with a waiting period to even get on the list for rehab, once on the list there was a waiting period before actually being called for treatment. Talking with former patients of that hospital rehab, they told me it was a group instead of individual rehab and it consisted mainly of stretching and a little bit of useless exercises. I happened to find a private one near me that just opened for business, visited it and called my rehab connection at my pulmonary clinic to get the business approved for treatment and referral. Lucky me huh? I have since continued on by pushing myself to go back to the fitness club for working out, as the rehab posed not enough challenge for me. Bottom line, I recommend doing some rehab whether it be clinical or on your own (just be aware of your limits). I use my portable oxygen tank to help me recover between sets on my weight lifting and have made acquaintances just out of the curiosity of me working out with the aid of oxygen, and my recurring cough when winded. They are truly concerned for my well being, yet supportive of my regimen after finding out my condition. Hope that helps in explaining my experience with pulmonary rehab.
Liked by Colleen Young, Connect Director
I do have upf. I was dx about 5years ago. I started on Esbert about a year ago. I started on O2 about 4 months ago. I only use it for when I am doing things like excerise, walking, ect.
Should be IPF. Spell check got me.
cold weather, high heat, and humidity I have found decreases my breathing capabilities. This is the first year I have gone to Florida for the winter (Live in Michigan) to get away from the cold with my condition. To start off, at least I can walk outside without a mask and not immediately begin my coughing spasms (something I did at home even with wearing pulmonary weather masks). The warm weather here doesn’t cause the “particular” problem with me. When the humidity climbs and begins to rain it challenges me a little more. I don’t know if the atmospheric pressure has any bearing on my breathing and coughing. I suppose I could begin a journal to find out, but never the less, it is what it is for me. I feel for you and wish you the best of luck.
Liked by nsix
Thanks Steve. Good luck with your ongoing personal rehab program. I appreciate your sharing your tips and progress.
hi, do not despair! ask your Dr about Esbriet. i have been on it for two yrs and my results are very good. i have been diagnosed 6 yrs! do not believe everything you read on internet! You may require oxygen along the way, but that is doable too.
PF is a tough dx.i was dx over 5 years ago. Although there is currently no cure, there a lot of research and tests of drugs that show promise. You need to see a pulmary specialists, one that is familiar with IPF. This condition is beyond the normal MD. One of the things that helps me is excerse. Hopefully there will be help for us in the next few years.
Liked by Rosemary, Volunteer Mentor
You should try Arizona instead of Florida…warm, dry
I love your attitude to “Keep the Lungs Moving”
Attitude is everything! 80 is the new 55 isn’t it?
Hi Oliver I have just received all my results I have IPF early stages my lung tests at 89%, have bilateral scarring, some levels in my blood are indicating lupus. This is in my family’s genes. I have some symptoms cough, winded after light exercise, I was just put on predizone 60mg a day. I have a future appointment at mayo jack later next month. I have been looking at the drugs and I have a ton of questions. I am 60 175lbs 5’10” how has the esbriet for side effects. I’m reading vomiting diarrhea sensitivity to sun. How has it been for you. Arty
Liked by oliver22, tula
Has anyone on the steam taken the drug OFEV I am wondering about side effects
Hello thanks for sharing your lung story. I understand your fear and I am happy you are brave to reach out to others on connect. I am a nine year lung cancer survivor. I also know about lung fibrosis.
You have made a excellent choice to work with lung health teams at Mayo. They are the reason I can now get outside and enjoy each day with activities because moving makes my lung feel better.
The brilliant pulmonary teams and support at Mayo have given me hope along with a great quality of life and desire to live well oand truly enjoy life and everything it has to offer ne day at a time!
Let’s keep in contact in connect! We need each other’s support. God bless you. You deserve a hug.
Hi! How did your walk or workout go today?
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