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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.
Replies to "Hi all you out there with PF. This disease showed up on a chest x-ray I..."
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?
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
Hi kiera, I too, have pf, was diagnosed ten years ago, and now I have mac. I was on the big 3, also on an iv drip, but now I'm not on any of those meds. The pulmonary doc states that after taking all those meds, I still have a small cavity of mac. I work everyday, walk everyday and pray every day.
@keira Hello, I can relate to several things in your message. Especially about others understanding the seriousness of the disease. I too,have been and try to continue to be as active as I can. Fatigue is a problem but it is difficult for friends/family to grasp. It is hard for us all. My faith has been a source of strength for many years and recently I have begun a Centering Prayer practice that involves times of silence. I find this calming. Blessings to you!
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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.