Mayo Clinic Connect
Is there any one out there that has PF?
I have it. Was diagnosed in 2002..
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
Hello Spicegirl. Thanks for posting this. I'll be telling my dr. about it. I've been a member of this group for only about 6 months and it seems all of us are given different diagnoses, different treatments, and different prognoses. I find this very troubling. It's almost as if we are all guinea pigs. Thank you for letting me vent.
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
I have had ipf six yrs. I experienced two flare ups since. takes a week or so to recover with antibiotics I have been on Pirfenidone for four yes and it works with minimal side effects.recently I have experienced weight loss and poor appetite and sleep a lot. since I have exceeded the five yr.expectation from DX I wonder should I not be surprised?
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
sixteen yes ago I was DX hyper-sensitive pneumonitis cleared in two yr. then 8 yes later became I'll with ipf ,going on six now.
Greetings! I am new to this site and I do have pulmonary fibrosis a more specific diagnosis maybe nonspecific interstitial pneumonia. Most other ILD have been ruled out. About five years ago I was told I had some lung fibrosis but it was not until this past March, 2017, that I began to pay attention & understand the specifics. Coughing and shortness of breath are my main symptoms. Recently I began taking Mycophenalate (CellCept) and a small amount of Prednisone. So far l’m doing okay and feel well though the cough continues. Has anyone had experience with forest fires and heavy smoke in the air? I live in Oregon where we have been surrounded by wild fires. At times I wore a 3M N95 mask. Thankfully we had some rain today!
Hi penlee. Have been directed to you as I think we share the same diagnosis which is a pretty rare condition. How are you doing now? I hope you see my post too. I’m on the same medication as you too, although I just started on Cellcept a month ago. But don’t feel my condition is getting any better… doing my daily routine ie. showers and walks and brushing teeth is getting harder. 🙁
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?
I take my Symbicort inhalation as deeply as I can and hold my breath as long as I can (up to 60 seconds), one puff each night. I also have a dripping left sinus since a minor stroke. I use NeilMed Sinus Flo rinse every night before bed and I do "Airlife" inhalation exercises 10 times before bed as well as using a humidified c-pap machine every night. My lung MD offered to put me on oxygen, but I felt that would be a crutch and an impediment, so I declined and I am glad I did!. I still huff and puff after any strenuous exercise and can no longer run, but at almost 76 I don't feel the need to run.
Hi all you out there with PF. This disease showed up on a chest x-ray I had in 2007. My doctor didn’t let me know about it and in 2012 I had pneumonia and an internal specialist I saw at the time, informed me that I had Pulmonary Fibrosis. I have been seeing a Respirologist since then, but as we all know there is no known cure for this disease and it will and is getting worse. I have been a very healthy person all my life. I was a power walker, a hiker, bicycled, swimmer and loved to jog. All this takes good lung control, so when I discovered I had this terrible disease, I was determined to continue with my usual activities. Well, over the past six years I have had to decrease my activity and now I am down to a slow walk. Other than this disease , which takes a lot of my energy, I am otherwise a very healthy person. I have not being a smoker, never did drugs of any kind, eat healthy, but for some reason I now have PF. I guess, because of the not knowing the cause of this disease, my specialist says it is IPF, just because they don’t know what caused me to have it, but it really is much the same thing. Has anyone out there heard of Stem Cell transplant for PF? I was talking to a doctor in Pittsburgh who does Stem Cell treatment via an IV. He is willing to do this for a cost of nine thousand American. The Stem Cell he uses is from the umbilical cord of C-section dilerveries. Has anyone gone this route, or has anyone heard of this? Sure would like some feedback to this question and also just some conversation from you. Hope to heard from you.
Liked by Terri Martin, Volunteer Mentor
Hi @keira, welcome to Connect. I've moved your message to this discussion about pulmonary fibrosis so that you can meet other members like @sophie1019 @francko @oliver22 @cognac @robinson @rayhastings and more.
Here are some additional discussions you may be interested in :
– Stem cells for Pulmonary Fibrosis https://connect.mayoclinic.org/discussion/stem-cells-for-pulmonary-fibrosis/
– Pulmonary Fibrosis and SUDDEN CHANGE IN BREATHING https://connect.mayoclinic.org/discussion/sudden-change-in-breathing/
– Pulmonary Fibrosis ( SOME TIMES ) https://connect.mayoclinic.org/discussion/pulmonary-fibrosis-some-times/
Keira, you ask about stem cell therapy for IPF. One of Mayo Clinic's focus area of Regenerative Medicine is in Lung Regeneration. Learn more here: http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/focus-areas/lung-regeneration
It can be really difficult to tell which stem cell therapies and regenerative medicine practices are effective and which institutions are offering evidence-based proven therapies. In fact, recently the Food and Drug Administration (FDA) released a stern warning against unproven stem cell therapies. The FDA issued these two press statements: https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573427.htm and https://www.fda.gov/newsevents/newsroom/pressannouncements/ucm573431.htm.
It's important to do your research.
To help people learn more about the proven therapies and the promise of developing therapies, Mayo Clinic offers a free telephone consult service. When you call the consult service, they will tell you about the availability of approved stem cell therapy at Mayo Clinic and elsewhere, and for what conditions. They can also tell you about research studies that are actively recruiting participants. Furthermore, you can add your name to a database to be notified when additional studies and information become available. You can learn more about the Consult Service here http://www.mayo.edu/research/centers-programs/center-regenerative-medicine/patient-care/clinical-services/regenerative-medicine-consult-service. Or call 1-844-276-2003 to speak with one of our experts.
Keira, what level of activity are you able to do now? Has acceptance been a challenge? You sound like you're dealing with the cards you were dealt very well.
Hi there Keira, I did have the stem procedure at a cost of just under $9,000 for my IPF condition and I still have shortness of breath. I'm approaching my 80th bd so I really don't know how much of my breathing issue us from IPF or just age…..I've never been 80 before. I'll see my pulmonologist in a week and maybe I'll learn something at that time. I, like you, have never smoked, did drugs and lived a normal, healthy life. We'll see how things go….may I ask your age for comparison to my condition?
Good evening Robinson. I am seventy years young. What kind of procedure did you have in regards to the stem cell treatment you had. The doctor I was talking with in Pittsburgh said my would be by an IV and it would be taken from the embicial cord of C-Section deliveries. I I was on a medication called OFEV for a year and it was supposed to slow the disease down by fifty percent. It didn’t do anything for me and the sideffects were very unpleasant. Would you let me know what your specialist says after you go? I would be interested in knowing if the stem cell helped or not. Thanks for being in touch with me. I really appreciate this.
Keira, I'm on OFEV also for about a year. I'm not sure if it is doing much. I'll try to be in touch later in the month.
@robinson and @keira I don't to mean to be a downer, but I spoke to Dr. Leventhal at the Mayo Clinic about stem cell therapy to help with lung repair. He said that the technology is not there yet and that more research is needed. He said he thought that selling that option now is taking advantage of desparate people. The fact thst you both say you see no difference from the therapy confirms what I have heard. Question, does your insurance cover these treatments?
Liked by Colleen Young, Connect Director
Thank you windwalker. You were not being a downer, just speaking reality and I so appreciate your reply. Our insurance would not cover the cost. I will keep staying positive and do what I can do one day at a time. How are you doing? How long have you had this disease?
Hi, thanks for responding. Does your system tolerate the medicine? It wasn’t doing anything for me and I felt terrible on it. I had all the sideaffects and could hardly go out of my house because of the vomiting and dirrehea as well as the body aches. Hopefully you can tolerate it and it works for you. It would be great if it slowed down your disease by fifty percent, which I believe is what the specialists strive for. I look forward to your reply later in the month
Hi Colleen. Thanks for your reply. Fortunately, even though I have had PF for ten years I had been manageing quite well, up to about six months ago. I now have a constant cough which gets very tiring. Almost everything I do now causes me to have to sit for a few minutes, sometimes longer until the tiredness passes. I have a relationship with God through Jesus, so yes I am dealing with it through my faith. I have been such an active person, always very healthy. I have been very involved in my church and blessed with so many good friends, through church and outside church, which I find a great help. I find though, that people find it difficult to realize the seriousness of this disease because I look so healthy and up to six months ago very active. Wlaking six kilometres daily and as a retired person very involved in many things. Thanks Colleen for the info you sent me, I appreciate it. I have read through it and just just may call the free phone line they supply. I appreciate you being in contact and look forward to more conversations. Blessings. Keira
version 188.8.131.52.3.2Page loaded in 2.665 seconds