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    • #11554
      Rune Harboe
      Participant

      I am wondering if anyone out there has considered a stem cell procedure for improving lung function for IPF patients. The Lung Health Institute I have been told has had some success with their procedure. They have testimonials on their Website that are very positive. https://lunginstitute.com/testimonials/nancy-h/

    • #11560

      Hi Rune,

      Thanks so much for posting your question here, it is a good spot for us to link other social media platforms to your question to hopefully generate more answers. I did want to share one of the answers we received from your question (which we posted anonymously). This is from a woman named Pat:

      I did stem cell in April 2016, it was great and I was good for over 6 monthly I had planned to do a booster in Nov. But I had colon cancer in Oct
      2016 and I can not do stem cell for 5 years I am so sorry I can’t do this because it was worth every 
      Penny. If you are in the early stages you need to look into it I did mine in Franklin Tenn for 3 days no surgery just take blood. Any questions send me an email

      If you’d like to connect with her directly, I’ve asked her permission to connect you both.

      I also read a bit more from the link you shared Rune, and I think I would consider doing this if it was available in Canada. It would be dependent on a few things of course, such as cost, health status, risks, etc. but I do agree: the testimonials seem very positive!

      I look forward to hearing what others have to say as well. Did you read the other forum thread about stem cell therapy? It can be found here, if you’re interested: https://pulmonaryfibrosisnews.com/forums/topic/stem-cell-therapy/  

      And : https://pulmonaryfibrosisnews.com/forums/groups/research-and-development/forum/topic/stem-cell-use-lung-regeneration/

      🙂

      Sincerely,
      Charlene

    • #11573
      Rune Harboe
      Participant

      Hi Charlene,

      Thank you for the additional threads regarding stem cell research. I had not seen this information before – thank you!

      I am seriously thinking of going through the process and will post the results, if and when. Would be interested in getting in contact with Pat since she has gone through  the procedure. Also, I would also be interested in hearing from pulminary Drs as to what their opinions are regarding this subject.

      Again, thank you for your response. Great Website!

      Regards – Rune

       

      • #11589

        Hi Rune,

        Nice to hear from you, thanks so much for your reply! I hope you found some of the other threads regarding stem cell therapy helpful. It definitely is a big thing to consider, and I hope in the very near future that more and more research will be released, showing positive results of this procedure for people living with IPF/PF.

        I will see if I can obtain Pat’s email for you, and perhaps you two can chat future 🙂

        S0 glad to hear you’re finding the forums helpful. We’re so glad to hear this from other patients.

        Warmly,
        Charlene

    • #29724
      Hans M. Fink
      Participant

      Hello Charlene & Rune,
      I am also seriously considering having stem cell treatment done for myself. Unfortunately clinics in Canada have so far resisted in offering it to us IPF patients.
      I checked with a clinic in Michigan, USA & they would do it.
      But since the pandemic struck us, the borders were closed. Now that I could travel to the USA, I am still hesitant because of the risk of Covid-19 infection.
      So I’ll wait a little longer.
      take care everyone,
      Hans

      • #29824

        @hansfink2007

        Hi Hans,

        Thanks so much for sharing your thoughts with us on stem cell procedures for IPF. While I understand its very tempting, please discuss this with your doctor before pursuing it, especially in another country. The Lung Institute is actually being sued for offering this and scamming PF patients. We just don’t know a lot / enough about it and whether it is effective. I’ve heard some people say it is, which is great but of course subjective. I’d just advise you do extensive research first 🙂
        Char.

        • #29826
          Hans M. Fink
          Participant

          Hello Charlene,
          I appreciate your comments very much.
          I think that a decision to have procedures done such as stem cell therapy, which are still largely unproven may have something to do with age & attitude of an individual IPF patient.
          When you are younger, such as yourself it is different. As for me, I’m 86 years old & figure “what do I have to Lose”. If I can add a few more years that may be relative pain-free, then why not.
          For the younger generation, I sincerely hope that effective cures will soon be discovered & applied.
          Many good wishes to you & the great work you do on this forum.
          Sincerely,
          Hans

        • #29892
          Christine McCann
          Participant

          Am I the only one who wonders why, If the human body replace cells every 7 yrs why is there disease?

        • #29894
          Christie
          Moderator

          An interesting question Christine @mahzie! The short answers is because we are made of organic material and we don’t exist in a vacuum. Our bodies are affected by environmental factors–radiation, oxidization, and other types of physical damage, as well as bacteria, fungus, virus, etc. Lots of things can make us sick, or age us, and ultimately, our cells do not reproduce perfectly forever. The turn over of healthy cells slows down as we age (hence wrinkles and other signs of aging), and our cells can make errors in reproduction (causing everything from freckles to cancer). Our own genes can affect our aging process and overall health too. Some genetic disease can be triggered later in life, or with the addition of severe stress.

          I’m not a doctor, but that’s a basic explanation. Simply put, we are amazing organisms, but we are far from perfect. We are on a trajectory of slow decay from basically age 25 onward. Perhaps that’s a bit morbid, but we can do amazing things with the time we are given.

          This question did spark a great conversation between my husband and I, so thank you for asking it. We have come up with a number of sci-fi-esque anti-aging/immortality solutions… Many of which exist in story, but perhaps we aren’t too far off from the days when those things become science-fact.

        • #30052

          Hi Hans,

           

          Very good point and I certainly respect everyone’s opinion on researching and trying any/all potential therapies to help with this cruel disease! Do keep us posted on your decision and how it goes for you too, always helpful and important to hear from others. Thanks for writing and I too hope a cure will be found for all of us soon.
          Char.

    • #29758
      Allen
      Participant

      I had it done in Pittsburg. I’m not sure if it helped or not but my wife is convinced it’s helped me through this thing that’s going around the world right now. I have nothing to compare it to so I’m not sure if it’s had an affect. If it has then I am satisfied. Peace of mind is worth something.

      • #29768
        Hans M. Fink
        Participant

        Hello Allen,
        I am curious how the stem Cell therapy procedure for the lungs was performed?
        Can you provide a brief description?
        Thanks,
        Hans

        • #29777
          Jerry Barnum
          Participant

          My daughter is a pediatric bone marrow transfer physician in Pittsburgh so we go there a few times a year. What hospital did you use for the procedure? How many times did you have it done and what kind of follow-up is needed? Have you seen improvement in your PFT and six-minute walk results? Thanks for posting?

      • #29867
        Marilyn Cellucci
        Participant

        Allen,

        Where did you have the stem cell procedure done in Pittsburgh? Were you satisfied with the results and the procedure itself?

        Thanks very much.

        Marilyn

         

    • #29760
      Bill S
      Participant

      Hello Forum,

      I am in my first year of IPF and have been successful taking Ofev with Nexium and Imodium to combat the effects of Ofev.  As friends of family have become aware of my Dx I have been given names and contacts of their friends/ relatives who have the same Dx.  with longer histories.  One of them is undergoing stem cell therapy from a Dr. Coleman of the Lung Institute in Nashville.  He also has clinics in Tampa and Scottsdale.  His stem cell donor site has been from his hip, ( iliac crest I believe).

      Of course, being interested in any therapy to beat this, I have been reading about stem cells from umbilical cords, adipose tissue, our own fat, and also centrifuged blood from oneself, ( platelet rich plasma-platelet concentrate PRP-PC ).  Blood drawn, centrifuged for platelet separation and concentration and then infused back into oneself.  PRP-PC I think, was initially intended for orthopedic issues and injuries.  It has been realized to have other benefits.  I plan to have a conversation with my pulmonologist about these therapies when I see him mid September.

      Bill Schumann

    • #29805
      Diane Beck
      Participant

      Please keep us updated!

       

    • #29856
      Catherine Leonard
      Participant

      Definitely interested!  Especially after receiving news that Medicare has denied Esbriet for me.  I’m not sure why at this point, and am in the very early stages of working with pulmonologist regarding an appeal.  Alternative treatments and clinical trials that may reverse IPF are golden and close, yet far away!  Hopefully those with Stem-cell successes will freely share!

      Catherine

    • #29888
      Anne Groves
      Participant

      Hi my name is Ann Groves quite new on here live in the uk. I have never heard of stem cell being done in the uk. Will keep looking. I was just wondering has anyone heard of a drug called Pamrevlumab it’s for PF. It seems to be in other countries but not here at the mo, it’s stage three testing but not quite sure what that means as regards to being released to the public, probably a way to go yet! . Thank you

    • #29915
      Thomas Adams
      Participant

      A couple of questions for those that have received stem-cell therapy for IPF:

      1. Was it covered by your insurance and/or Medicare?

      2. What was your cost for the procedure?

      3.  What facilities are currently offering stem-cell therapy for qualified IPF patients?

      Thanks for all the input.  I am turning 66 in October and was officially diagnosed with IPF last summer following an open lung biopsy.  Scheduled for yearly CT scan in a few weeks to check progress.  Initial diagnosis/pathology indicated low fibroblast activity but, I think my condition has worsened some over the last year.  I really do appreciate this forum and the exchange of ideas and experiences.

    • #30014
      Bill S
      Participant

      Hello Forum,

      Just an update from last months post about stem cell therapy.  My contact via a friend finally has responded.  He was away from home.  He states that he has been an IPF patient for 7 years and was told by his MDs then that he had 4-5 mo. to live with a lung function of 18%.  He had been an arson investigator for his local Fire Dept.  He has been using the Lung Health Institute of Nashville for periodic stem cell injections since then and is doing well.  He admits not everyone has success and America being as litigious as we are explains the law suits and accusations.  He did not offer any current statistics as to his lung function or to costs or insurance coverages.

      Unfortunately, my pulmonologist did not have any knowledge or insight regarding stem cell therapy.

    • #30020
      Ron Johnson
      Participant

      A statement from the Pulmonary Fibrosis Foundation:

      https://www.medscape.com/viewarticle/910584

    • #30030
      Bill S
      Participant

      Thank you Ron,  the Medscape article certainly is enlightening.  Well, you saved me a flight to Nashville.

      Bill

      • #30032
        Ron Johnson
        Participant

        I was hoping stem cell would an answer or least have a high probability to make it worth trying. From what I have seen, the risk is too high as of this time. Hoping research will yield a solution.

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