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    • #32984
      wesley
      Participant

      I would be interested to know what other people are doing in terms of diet, exercise and holistic treatments.

      I have for some time been exploring how I can improve my diet, encourage my body to maintain healthy lung function and maintain a balanced lifestyle. I have to say, with varied success.

      I would love to connect with others that are on this path, or intrigued. For what its worth, I would be more than happy to share what I have been doing, if it can help others and also provide a broader perspective on what I am doing, it would be great to connect with other sufferers.

      I am 44 years old, male, diagnosed 18 months ago.

    • #32999
      Greg Ford
      Participant

      I was diagnosed 2 years ago.  I am now 66.  Took Esbriet for one month and quit.  I started out building up stamina on an elliptical after I got off the Esbriet.  Exercising for 30 minutes at a low tension.  After about 6 months I was up to 60 minutes a day.  I do not overextend myself just a steady work out at a comfortable pace.  I now am up to six miles in about 60 minutes.  I try to exercise at least every other day but do not always get a chance to do so.  I limit any alcoholic drinks to just one a day.   I do not eat anything 3 hours before I go to bed.  Two days ago, I had my lung function tests and my results are the same as I was 2 years ago.  I have also lost over 30 pounds. If my children or the grandkids are sick they are not supposed to visit until they are well.  My exercise program is not a cure, but it has kept me on a plateau I believe.

    • #33002
      Linda Maguire
      Participant

      There have been several alternative treatment suggestions as well as exercise mentioned on this forum.  Some folks recommended taking green tea extract, however I have not seen any large studies that support this.  On the other hand, there is some research to support a series of Chinese breathing techniques that have shown good results in IPF patients.  The exercises were published on the forum awhile back, & the journal article was called LHP’s Respiratory Rehabilitation for Pulmonary Fibrosis.  The exercises are simple to do & supported by research.

      Anecdotally, one of the members of my IPF support group changed his diet, lost weight & started walking regularly, gradually increasing the distance.  He no longer needs oxygen, is stable, & recently walked 150 miles over a a few week period to raise money for IPF Awareness month!

      I was diagnosed 6 years ago & am one of the lucky ones, in that I am not on medication (other than to treat GERD), & my PFT & CT results have remained stable since diagnosis.  I exercise regularly & try to eat a healthy diet, although I could definitely benefit from losing weight.   I think anything one does to maintain a healthy lifestyle is beneficial.

    • #33007
      John J Harrigan
      Participant

      Mucous induced coughing has been a problem for me. Googling dietary triggers for mucous buildup, I found a number of things I never consumed much of in the first place, like sugar, soy, deep fried foods, excessive amounts of red meat. I find it completely impossible to cut out coffee, which is a trigger, but it was easy to find substitutes for processed cereals and soda.

      I was able to add to my diet some suggested things like pineapple, pineapple juice, honey tea, ginger ale, and rye bread rather than wheat bread. It was also suggested to drink more water.

      I’ve been doing this for a number of months, and it might have made things a little better. It certainly hasn’t hurt. My medications have remained constant throughout this period. I still cough more than most people do, but it’s been awhile since I’ve had any of the uncontrollable bouts of coughing I was having a year ago. And I’d be curious to know if others have found dietary changes to be helpful.

       

       

    • #33008
      Steve Dragoo
      Participant

      @wranger

      Hi Wesley,

      I take a hand full of supplements daily but an orthopedic surgeon friend says pills are for dying people food is for living people – an adaptation from Hippocrates: “Let food be thy medicine and medicine be thy food”.

      With this lovely disease (starting 6 years ago) medicine is important but the supplements have helped me a lot.  Generally, my wife and I eat healthy avoiding processed foods (mostly) and meat, and eating certain fish and chicken but a lot of veggies and certain fruits are known to help us…

      Stay well…
      Steve

    • #33033
      Denise Stogdill
      Participant

      Hi Wesley,

      I was diagnosed with IPF RA about 18 months ago.  I immediately changed what I ate to decrease the amount of inflammation in my body.  So, I took out sugar, gluten, flour, alcohol, soda, caffeine (except for one cup of coffee in the am😊) and processed foods.  I drink loads of water, pedialyte for hydration and electrolytes and vitamins C, zinc, E and D.  I’ve since lost 85 lbs and I go to respiratory rehab and exercise on elliptical at home and free weights.  I take Ofev and Mycophenalate as well as other meds for Gerd.  I’m on oxygen for exertion only at 3lpm’s.  As I’ve come along, my body was processing my oxygen more efficiently.  However, 3 months ago I got COVID for the first time and took a small hit with my lungs.  My capacity went down around 4% and I was very disappointed! I am 64 years young and I would like to think that my progression would stay the same and not decrease.  However, I continue doing what I do and more importantly keep moving.  Everything you do will help with this disease.  Even if your stats don’t show it but your lungs will feel it.  My doctor and I agree that living this lifestyle will help slowdown the progression of this disease!  Good luck to you, keep moving and hydrate!👋👋

    • #33042
      Curt Strickland
      Participant

      When I was diagnosed with IPF, I sent my diet into overdrive. I was already a vegetarian, but I ramped that up and ate mostly plant based, I also took up yoga. My disease progressed and I got stem cell therapy. I started to notice a difference after about two months. But then my wife probably got covid, January of 2019, before they knew it was covid. She probably passed it on to me and I went downhill fast. Fortunately, I was able to get a double lung transplant and I’m doing great 2 1/2 yers later. But I believe my diet and the stem cell saved my life, and help me recover quickly from my transplant operation when I was 68. You can contact me if you need more information: [email protected]

    • #33148
      Millie
      Participant

      Diet is very important as is keeping yourself physically active. I’m on Ofev which is hard on the liver. I no longer drink any alcohol. Abstaining also helps with the digestive problems caused by this medicine. You could see a holistic doctor and see how they can help you with this. Natural remedies are always best but traditional medicine doesn’t go that route. I had PF for years before being diagnosed. It is now well advanced and I feel that I don’t have time to play around with natural remedies. Early intervention is key for the natural stuff to work. Traditional doctors know a lot but there is still a lot they don’t know, especially about PF.

    • #33198
      Jofac O’Handlin
      Participant

      Hi All, The message to eat healthily is loud and clear and one which I have stuck to, despite the advice to avoid fibre to compensate for OFEV effects on the digestive system. I also take a cocktail of vitamins and nutriants. Keeping on exercising is vital, only walking slowly now.
      People have advised taking various alternative therapies. I am investigating the compound recently featured on PFN, namely piceatannol. It is noted as a natually occurring in several foods and berries, notably red grapes, blue berries, passion fruit, and peanuts. I thought peanut butter might be a good option, and a little search revealed, 1. That piceatannol is not readily absorbed by the gut. 2. That piceatannol in the peanut is mostly in the callous(?), the red orange skin? Tests with peanut butter enhanced with the callous (normally a waste used in animal fodder) showed much enhanced levels of piceatannol.
      Peanut butter seemed a good option, but is the high callous version available?
      My situation, 9 years into it, 7 years on OFEV 2 x 100mg.
      Was a runner / jogger till mid 2019. Now on the cusp of O2 for any exercise.
      Comment, we talk about oxidation damage, and antioxidants.
      How soon should one submit to taking higher oxygen into the very area that is under attack. Just thinking out loud!
      Regards to all,
      Joe

    • #33199
      Jofac O’Handlin
      Participant

      Hi Steve,
      It seems that we are at about the same stage. My O2 sats are about 92 – 94 at rest (creeping downward). Likewise, puffing at the top of the stairs. Have concentrators in living room and bedroom. Use as and when. Portable O2, which my wife carrys for use uphill, or against the wind. We go out for 20 to 40 mins EVERY night, except windy / rainy conditions! Sometimes I am most reluctant but go anyway. Hanging on in there!
      It may be that one clutches at straws, but one hopes.
      The article that I read said peanut callus, so shell or skin?. As this was from Chinese research there may be an question over interpretation. An American article on the ‘skins’, with photo to confirm, discussed the possible use of skins to enhance chicken feed. They talked about the antioxidant value and etc., which is of interest to us. One Australian maker of peanut butter seems to use skins in their formulation. Not likely available in the UK.
      Cheers, Joe

    • #33200
      Jofac O’Handlin
      Participant

      Hi Steve,This is one site referring to piceatannol:—
      https://pubs.rsc.org/en/content/articlelanding/2016/fo/c6fo00685j
      It suggests that it has greater potency than reversatrol. BUT.??
      Regards to all,
      Joe

    • #33217
      Jim s
      Participant

      Ask your doctor to prescribe pulmonary rehab therapy. It teaches you how build up muscle tone which lowers the oxygen required to operate your muscles. The more out of shape, the more oxygen required to do anything. It’s a long program, but it’s worth it.

    • #33218
      Phil Ryan
      Participant

      I’ve had IPF and Pulmonary Hypertension for over 2 years, and am on Esbriet and Tyvaso with minimal side effects. Diet is important, but I think emphasis on keeeping it well balanced, minimizing rad or processed meats, and keeping alcohol at a minimum is most essential. Lose weight, if you are overweight (i’m 76). I just quite alcohol altogether and lost 20 pounds and feel 100% better.

      Just as important is exercise. I’m lucky enough to be able to use a local hospital’s pulmonary therapy group which I attend twice/week for an hour apiece. Includes breathing and stretching exercises, upper and lower body strength training, and about a 1/2 hour on a treadmill/
      step machine, etc. It really helps, and I highly recommend that or something similar if it’s available to you.

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