February 27, 2019 at 4:51 pm #17154LeslieParticipant
Hello all. I had never heard of IPF 2 months ago. Felt healthy and had no problems with activities. My GP heard a crackling noise in my lungs that she had never heard before. Many tests later I received my diagnosis. I have a wonderful pulmonologist and am 4 weeks into pulmonary rehab. Also on Esbriet. Has anyone been on Esbriet and taken the Chinese herbs from the Wei Institute at the same time? Don’t feel comfortable mixing too many substances at once. Any advice is greatly appreciated.
February 28, 2019 at 1:37 pm #17180Charlene MarshallKeymaster
Thanks for writing to us, and joining the forums, although I am sorry this cruel disease has led you here. I remember the time following my diagnosis well, it was tough for me: filled with many mixed emotions, conflicting actions and even a sense of disbelief I think. I hope you’re finding ways to be gentle with yourself in these last two months, and be assured, you’ve found a wonderful online community who is here for you and truly understands.
I’m really glad your pulmonologist has been helpful and supportive, that is important, as is early diagnosis and intervention which it sounds like you have with getting pulmonary rehab set up. That program really helped me, so I hope it is beneficial for you as well 🙂
I am unfortunately not really helpful when it comes to Wei products and/or Esbriet, as I am not on either. I am on the OFEV anti-fibrotic medication, but I know some members have really benefited from Wei. You can read the following forums regarding discussions on each if you’d like:
Let us know if you have any questions and we’ll help as best as we can.
February 28, 2019 at 2:16 pm #17188Suzanne R BrennanParticipant
I was diagnosed with IPF over three years ago now but I can still remember going home stunned by the news I had received. Especially after doing some research on the Internet about it. My doctor told me not to do that but of course, I did. My second visit with my pulmonologist was filled with tons of questions and thankfully, he was very knowledgeable and willing to share that knowledge so I came away determined to do what I needed to do to try and live longer.
I had always exercised but I really stepped it up after the diagnosis with daily walking – as much as I could do – and lifting weights twice a week with a trainer to make sure I didn’t do anything dumb so as to hurt myself and make it harder to continue. Fortunately, I went to a health club initially, met a great trainer and once I started needing oxygen to work out, he agreed to come to my home to help me train.
On medication, I started off with OFEV and was on it for almost a year but had quite a few episodes daily of gastrointestinal problems. I switched to Esbriet about eight months ago and have had no side effects at all. Much better drug for me.
I also am a member of the Inspire community (sponsored through the American Lung Association) and have seen quite a few comments on it; most everyone refers to the WEI products as a scam and says they won’t help at all. They are pretty vocal about it and I know, as I have experienced this as well, that you want to try ANYTHING that may help but I would say not to waste your money on the WEI products.
Perhaps Charlene or others can weigh in on this but that’s what I’ve seen.
March 1, 2019 at 9:27 am #17203Charlene MarshallKeymaster
Thanks so much for getting in touch and sharing your experience about your time of diagnosis. I also remember this well unfortunately, and was guilty of looking up information on the internet which made my coping more difficult at first. If folks do this, I cannot stress the importance of ensuring the information read online is from a credible site/source…
It sounds like you have great members on your team Suzanne, including your doctor which is so important. How kind of that trainer to come to your home to help you continue strength building once you went on oxygen. How is that training going for you now, are you still participating in it?
I agree with you Suzanne regarding the willingness to try anything that might help us with IPF. I truly look a it as a “what is there to lose” situation, as long as it isn’t knowingly harming ourselves or others. Everyone must weigh the pros and cons, including costs, of these potential products though I do agree. Some folks found the Wei products incredibly helpful, I know Denny has and found them a really important part of his disease management. Sorry to hear members of the forum were so negative and vocal about this though, that is sometimes tough to navigate isn’t it?
Take care Suzanne and thanks for writing!
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