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Ben Robinson

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@6yearvet

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    Ben Robinson replied to the topic Help for High Oxygen User Nasal Pain in the forum Using Our Forums 11 months, 4 weeks ago

    I also tape one 11 Hour small hand warmer to the mask and the heated air helps a whole lot  I have been using rebreather masks from vitality medical and changing every week. I will check out the above machine

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    Ben Robinson replied to the topic WEI Institute Natural Care of Chronic Lung Diseases in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    Wei only works if you take all those capsules every single day.  If you skip days or weeks it is not as effective at all. It is a lot of tablets to take every single day with no slack combined with your other medications on top of it. FYI

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    Ben Robinson replied to the topic WEI Institute Natural Care of Chronic Lung Diseases in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    That runs $1500 a month so it would be $3000 for two months of the soup a and b And that other one plus the CL or clear lung which $189.  $1312 plus the 189 is about right at 1500 per month to throw the kitchen sink at the disease. I think I am getting some benefit. I am on the Ofev too to hopefully slowdown the disease progression. Expensive but…[Read more]

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    Ben Robinson replied to the topic WEI Institute Natural Care of Chronic Lung Diseases in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    I think I need an exorcism   The thing has a soul. I feel like it might be contributing something to my general improvement. This stuff is all they had 1000 years ago.  I will post back after the holidays when I am done. Anybody know a good witch doctor.

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    Ben Robinson replied to the topic WEI Institute Natural Care of Chronic Lung Diseases in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 2 months ago

    I been on Wei for three months and like the others it is hard to say. It may have helped getting my inflammation down along with my prednisone bursts each month. Did you know that fibrosis is actually inflammation at first ?  There are transplant pushing Pulms that would disagree.  they also hate my pred 5 tablet bursts prednisone – why- the o…[Read more]

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    Ben Robinson replied to the topic End of Life in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    I mentioned I was rejected for lung transplant because I offended a jerk doctor then realized he did me a favor. He said I was frail and I said I could kick his arse. I curl 45 what do you do wimp. Pulmonologist = Lung Transplant Salesman. Outcome Percentages are poor.  I stand proud and tall of my self advocacy aka big mouth.  So I looked h…[Read more]

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    Ben Robinson replied to the topic End of Life in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 3 months ago

    I too appreciate this information and those taking the time to convey it.  I was recently declined for a lung transplant probably because of my outspoken mouth calling the doctors antics and contradictions as i see them.  After all of that testing trials and tribulations.  I left feeling like they had done me a favor when hearing all that you go…[Read more]

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    Ben Robinson replied to the topic Choosing a Portable O2 concentrator for air travel in the forum Using Our Forums 1 year, 5 months ago

    At 30,000 feet on a plane, my interstitial disease lungs go bonkers and the saturation levels drop like a rock. Be sure to take plenty of oxygen on the plane.

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    Ben Robinson replied to the topic Sudden weight loss in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago

    I have the enlarged prostate and difficulty with urination for which i was prescribed Flomax.  After two months it is working well.  Not a good issue to have when you are on Lasix for fluid also.  All i do is pee.  I have also Lost weight and have gone from my former body builder mass to skeletor the bag of skinny bones. The fluid also acc…[Read more]

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    Ben Robinson replied to the topic How does taking Prednisone help IPF patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago

    Prednisone has been my most effective medicine. 40 mg bursts for five days every three weeks have worked best and minimized the side effects. The doctors also have me on 7.5 mg per day in between but I am not sure what that does.  Every three week burst peels down another layer of inflammation. My lungs are now significantly healed from that…[Read more]

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    Ben Robinson replied to the topic Allowing Hope Into Tough Days in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    Keep fighting til the end is my motto on this. Go down swinging and take some doctors with you. LoL  Cheers!  Difficult days coming for me a test, a doctor, a drivers license renewal and a vaca with the grand kids   All a struggle and an imposition on others with my condition at hand and oxygen in tow.   Battle Speed!  Raaah

     

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    Ben Robinson replied to the topic Recent Improvements and side benefits in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    I think I am seeing benefit from it. Just a lot of pills to take every day. I think it is helping along with my other meds.

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    Ben Robinson replied to the topic Ofev Users can Safely take Ofev on a Long Term Basis in the forum Ofev (Nintedanib) 1 year, 6 months ago

    I dropped down to 100 mg OFEV and have zero side effects now after a three month pause between the 150 and 100 then started the 100 a while back.

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    Ben Robinson replied to the topic Combo meds in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    Yes I am taking both. I have PH and PF.

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    Ben Robinson replied to the topic Has anyone tried Stem Cell therapy? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    Lnour

    Dr Lobo is a nationally reknowned doctor whom I had appointments and discussions with regarding stem cell therapy and is the credible source of my information.  He was brought up by another participant in this forum to which I responded   It seemed quite pertinent to the subject

    The lung institute at least used to do stem cell therapy f…[Read more]

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    Ben Robinson replied to the topic Diet additions that might help AND WEI Institute cure claim – really? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    I am not sure but it might be helping me. I improved but I am not sure if it is the prednisone bursts, the Wei, the disease cycle, the oxygen adjustments, the Tyvaso or the Ofev.  I am not going to chance stopping the Wei in case that is a contributor to the upturn.  I was breaking the capsules because I didn’t want to ingest all of that pla…[Read more]

  • Profile picture of Ben Robinson

    Ben Robinson replied to the topic Has anyone tried Stem Cell therapy? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    The Place is called the Lung Health Institute on line and are probably the oldest private cellular treatment around that Hopkins doctor told me they were after them.  Dr. Lobo really did impart the dangers to me as I described.  I wish you all the best of luck and hope that you do find something somewhere with the stem cells, but I do think L…[Read more]

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    Ben Robinson replied to the topic 2nd opinion at Cleveland Clinic in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    I had to take medical classes on line to be a doctor to manage my doctors and my disease. I agree that second opinions from such high level places are a smart thing to do. But I have found that they all lack knowledge of interstitial lung diseases. There are 200 types. Did they tell you that? I found mine on NORD for rare diseases. One major…[Read more]

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    Ben Robinson replied to the topic Has anyone tried Stem Cell therapy? in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 6 months ago

    Dr Lobo is my Doctor and I went to see him for that reason. He has had to abandon that program due to bonding amd money. He also made it clear that his systemic stem cell injection is not for everyone and has dangers as I described to some level above   He is however a very good pulmonologist but it was a four hour drive and my PH didn’t like th…[Read more]

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    Ben Robinson replied to the topic 6 Common Complications of Pulmonary Fibrosis in the forum Pulmonary Fibrosis Awareness & Advocacy 1 year, 6 months ago

    Yes I have PH lungs which is a complication and it is the most debilitating aspect of my disease. My lung PFT scores hardly decline but then there is this pulmonary hypertension from the narrowed hardened lung blood vessels and all which is worse.

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