Lee
Forum Replies Created
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Dave if you’re speaking of COLD laser therapy, I’ve had several rounds of it in my first couple years with IPF. I even bought my own device for about $450 so that I could use it at home without driving somewhere to receive treatment. It “may” have helped with inflammation but I was doing multiple protocols to reduce inflammation so I can’t say that the laser did anything specific or notable. It didn’t hurt, and it was one of many things I did to battle a very serious condition of 30% remaining lung function with massive lung scarring. The most important things I did and still do today that are definitely working are 1) daily walking 2) daily exercise (I use an oxygen tank at the gym to bicycle and strength training 3) very good nutrition with adequate protein, vegetables and ZERO processed foods and sugar 4) 7-8 hours of quality sleep nightly. 5) some basic nutritional supplements.
I use oxygen 24 hours a day but have lots of stamina and strength and I am never fatigued. I’m 66 years old and have had IPF 4 years.
Lee
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I used the WEI soups and LC in the first year after diagnosis. After the first four weeks I noticed a “subjective” difference. Breathing felt easier. I was already on 3L/5L of oxygen. After 90 days I didn’t feel any more progress so I discontinued. I bought some of the herbs in the mixture such as Cordyceps and have continued to take them over the last two years. I also use Dr Paul Noble’s Zinc/ NAD+/Resveratrol protocol. It’s a low cost approach that uses widely available well known supplements and I’ve used that for 8 months now. My diagnosis was severed advanced IPF with less than 30% lung function. I’ve not taken any of the pharmaceutical anti fibrotics, but I follow a quality nutrition and basic supplement protocol, I do lung and breath training twice a day and I work out six days a week in the gym and walk four miles a day. I use supplement oxygen while exercising. I have improved my lung function over the last three years and have an excellent quality of life.
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I agree with Dawn on the Airofit device. I used a device similar in principle to the Airofit but an older generation model. The diaphragm training increased my lung capacity significantly in a very short time. I have ordered the Airofit after talking to Dawn since the new Airofit Plus not only strengthens your diaphragm but it records your progress based on its built in spirometer measurement and tracking. I also used the airphysio device that you spoke of but it only strengthens your exhalation very moderately. It’s ok for breaking up mucous.
The Airofit though strengthens your inhalation and is a hard workout for the breathing muscles. Regular use of this device will improve lung capacity pretty quickly. I’ve got two years of spirometry data that demonstrates it in my case.
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I use the Peak Flow meter purchased on Amazon. It is digital and very accurate and I’ve used it for two years recording my Spirometry readings weekly. It only costs $30
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Yes. I was diagnosed two years ago and applied after a year and was approved. I didn’t want to deal with the SSA and all the red tape, so I hired one of the disability law firms who specialize in it. Klein and Associates were the firm I used. They were excellent. They handled everything and gathered all my medical files and I only had to go for a test of PFTs. It took about 6 months but they got the payments paid retroactively. They charge a reasonable fee out of the first check from the retroactive SSDI payment.
I’m sure there are thousands of firms that specialize. Shop around and get three proposals.
Lee -
Very interesting. Thank you John.
Let me know if you find out more on purchasing it. You can purchase sodium pyruvate but what else is in the nasal spray, I wonder…
Here’s the available product:
https://www.profyskin.com/products/bcn-sodium-pyruvate-10-x-2ml -
I use both. Nattokinase at the 2,000 FU potency and Serrapeptase at 120,000 SPU.
I’ve used both for awhile among other things and I have recovered my health greatly. I was diagnosed three years ago with advanced IPF and only 30% remaining lung function. I was on 6 liters of oxygen and unable to walk 20 steps. I never took the antifibrotic pharmaceuticals but have taken several herbal and mushroom types for improving lung function I have recovered significant lung function through lifestyle, exercise, nutrition and breathing exercises. I walk 4 miles a day now WITHOUT oxygen and exercise in a gym and ride a a bike and swim. I wrote a book about my recovery called A Matter of Life and Breath. It’s available on Kindle for less than $5. All profits go to the Pulmonary Fibrosis Foundation. Send me a message to discuss more if you’d like.
Lee -
Gavin, I have been through severe situations with pulmonary fibrosis. I wrote a book that was recently published on Amazon called A Matter of Life and Breath about my journey.
There are some specific exercises I followed for breathlessness and oxygen anxiety. I have also found excellent relief using the Buteyko breathing method. Patrick McKeown writ a book call The Oxygen Advantage that describes methods for calming breathing exacerbations. He also has several youtube videos. You may contact me by email and we can set a time to talk by phone anytime. [email protected]
All the best to you,
Lee Fogle -
Gavin, your story is heart wrenching. I have traveled down some of the roads you are on. Thorough pulmonary rehab and exercise and collaboration with my physician I have gotten significantly better over the last 18 months. So much so that, at the urging of my physician, I wrote a book about how I’ve recovered. The book A Matter of Life and Breath will be released May 1. I will happily send you a copy of it. My physician wrote the foreword to the book describing how bad my condition was when we started therapy. I cannot begin to address all of your issues and questions on this thread but I will be happy to have a conversation with you to describe my condition before and the principles my physician and pulmonary rehab followed to restore my lung function which was 28% at the lowest point.
You may message me to set up a time to talk as one patient to another. All the best to you!
Lee Fogle -
Rather than wait on pulmonary tests, during the interim periods you can track your own PFTs (with the exception of DLCO which requires a $100,000 machine!). I use a $30 digital spirometer called a Peak Flow Meter that I purchased on Amazon. It measures FEV1 and PEF which are two indicators of lung volume and function.
I tend to battle IPF rather aggressively, and I do daily strenuous exercise and walking plus daily breathing exercises to improve my lung function. About every two weeks I conduct my own PFT and record the date in a log.
Over the last year I have recorded a 50% improvement in lung function that my physician was shocked by considering my diagnosis of “end stage” IPF. My own PFT log gives me more real-time feedback on what is working. -
When I was diagnosed with IVF two years ago, I became depressed, was on oxygen at 5 L, 24 x 7, and had very little appetite. I lost 30 pounds, mostly muscle and became emaciated. Once I realized that inactivity was going to be the cause of my death, I started exercising very slowly at first, and always with oxygen. It took a year for me to regain my weight back to 172 pounds. I maintain that weight constantly, and I exercise every day. I walked 4 miles a day, 2 miles in the morning, and 2 miles in the evening, and I work out in the gym six days a week. I also ride a bicycle. None of these are easy because my oxygen saturation drops Precipitously , however, I use oxygen and work out, and I have gotten healthier and stronger as a result. There was a time just 14 months ago. I couldn’t walk 20 steps without being exhausted and short of breath. I started very slowly, but exercise and nutrition have save me , I don’t take any of the anti-fibrotic drugs, however, I do take a few herbal supplements that seem to help. I tried many different supplements, but have found the most important things are daily exercise, good whole food, nutrition, and a good nights sleep of eight hours every night.
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I’ve just written a book on how I recovered my health from being in a place that sounds similar to your mother—unable to walk to the bathroom, on 5 liters oxygen 24 hours a day, very weak. The book won’t be published until late April, but I have a number of questions and possible suggestions for your mother. I’m not a physician, I’m a former athlete who almost died from IPF at the age of 62 and I am now walking and exercising at the age of 65 without oxygen and carrying on normal life activities. I also volunteer at a large Hospice here in Florida so I see lots of end stage IPF sufferers. Your description is thorough but I have a few questions and possible suggestions that worked for me if you’d like to email me at [email protected] we can schedule a brief phone conversations to talk about what worked for me.
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Hi, 18 months ago I was making plans for end of life that seem to be rapidly approaching, as IPF took a great toll on my health. I spent considerable time reading and meditating and coming to grips with the fact that we all will one day die. I was at a point of giving up, but something inside of me turned, and I decided that first and foremost I would live a full and active life up until the day that I die, and in order to do that, I would battle this disease to the best of my ability. Now 18 months later , I am living a very full and active life. I have gotten off of oxygen which I had been on 24 x 7. Previously I work out in the gym six days a week and walk my dogs for miles a day. I bicycle swim play golf and pickle ball. I volunteer for the elderly programs at the Salvation Army and teach a class on healthy aging. I also volunteer with the local hospice house, and I am in training to be an end-of-life Doula. elderly programs at Salvation Army and teach a class on healthy aging. I also volunteer with a local hospice house and I am in training to be an end-of-life Doula. I have written a book about my journey back to health with pulmonary fibrosis, and the breathing, exercise and nutrition approaches that worked for me. I hope that the book will help others see that there is a way to live a full and active life with this disease, and it does not have to be an early death sentence. My book will be published in late April. Today on earth about 200,000 people will die, and one of them could be me. If that happens to occur today, then I know that I have lived fully and did not give up. I am doing all I can to honor this gift of life, and that’s all I can do. IPF has been an amazing awakening to the joy of life for me.
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My physician convinced me to write my book, and she wrote the foreword to the book.
I take other supplements, such as Dr. Paul Noble of Cedars-Sinai recommended zinc protocol with resveratrol and NAD+.
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the Sinai study on zinc:
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I have been using the zinc protocol recommended by Dr. Noble at Sinai. That’s the combination of zinc, picolinate, NAD , and resveratrol . I have had an advanced stage of pulmonary fibrosis for three years that, through exercise, breath and lung pulmonary rehabilitation training, and nutrition I have been able to remain stable and have actually improved my lung function. I started the zinc protocol four months ago. My lung function has continued to improve, I am stronger in my daily exercise, and I feel that I breathe easier. Despite pulmonary fibrosis I live an active good life, and zinc seems to be helping continue to improve.
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Exercise more. Walk more. Develop your leg and trunk muscles. These large muscles require much oxygen and the stronger they are the more efficiently they utilize oxygen. Over two years I have gradually increase exercise every day and while I couldn’t walk twenty steps on 6 liters of oxygen without massive desaturation, when I began exercising it changed that. Now I can walk 4 miles a day without supplemental oxygen. I still desaturate slightly but my heart rate remains low and I can enjoy walking without breathlessness.