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john styles
Forum Replies Created
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The green tea farse, or at least that is what I call it. After reading the news release on green tea I bought several bottle’s and started taking the supplement. Then I thought I would look into the study. The study was done at prestigious california university and then I thought I would read the study. There it was at the end of the study, it was the President, vice president and board members of the green tea company doing the study.
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Having UIP and cirrhosis made me ineligible for a lung transplant, I was told I would need liver and lung transplant, a double and survival rate is 50%. My cirrhosis was from Hep C that was cured 6 years before being cured of Hep C. I could not take the medication available. People will tell you they have had IPF for 20 years or 10 years, all this is based on when our disease was discovered. My UIP journey was discovered when I had 50% lung capacity. to know how fast I am deteriorating I an doing pft tests every 6 months. I have had this disease 7 years since discovery but I think I have had it 20 years.
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john styles
MemberJuly 24, 2023 at 10:39 am in reply to: How quickly can pulmonary fibrosis progress?Interesting. I went to center for excellence, a transplant center. They did the 6 minute walk test and put me on 10 liters walking and 8 liters sitting. 2 weeks later I collapsed and the critical care lung doctor at a different hospital used a bypass mask ( not a cpap ) and reduced my elevated carbon dioxide back to normal, seems the pursed breathing is important as it can reduce the carbon dioxide ( now where have we herd that pursed breathing is good for you, maybe pulmonary rehab. ), its been 4 weeks since being in the hospital and my 10 minute walking is at 5 liters and sleeping at 2 liters, when I went in walking was at 10 and sleeping at 5 liters. I think more oxygen is not the answer, better understanding of blood gasses is needed.
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john styles
MemberJuly 15, 2023 at 9:25 am in reply to: How quickly can pulmonary fibrosis progress?For me the pft tests diagnosed my progression. I would get two per year and you can see the rate of your decline. Some people will tell you they have had it 20, 10, 5 years etc. How much lung capacity did you have when diagnosed and how do you have now will give you your rate of decline. Seven years ago I had 50% when diagnosed. I suspect I had it 10 years prior to being diagnosed.
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I do pft tests to track progressing. How long you have really depends on your pft test. Some people will say they had it 10 years, some 2 years, etc, It depends on how much lung function you had when detected. I had 50% and noticed when I breathed in it felt like I was in a Smokey environment. The next person may tell you they have had it for 12 years but you need to know the pft score, they probably had 90% of lung capacity. This is my 7th year, no drugs but not much lung left.
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Does not sound like you are getting correct advice, I would first have a lung transplant surgeon review the information you have which may not qualify you for their transplant, a major transplant hospital would be prefered. I had a well known lung doctor specializing in lungs at a major hospital tell me he would not of gotten the biopsy ordered by another pulmonary physician which turned into a tracheostomy which is a difficult operation and one to avoid,
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I also have the sneezing and then nose bleeds, my ENT doctor suggested Neli Med and make sure it had aloe in it, no more nose bleeds but still get some sneezing. He also told me to cut the cannela that goes into the nose back to take pressure of the area where nose bleeds can be started.
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Saw PF on a x-ray reminded me when I was 10 years old and got home from school and my older brother who was 18 at the time was eating a late lunch of chicken noodle soup and reading a magazine. Hw asked me anything new at school and I said yes, we were doing drills for a nuclear weapons explosions and we get under our school desks, he showed me the magazine he was reading and it was a playboy showing a man with his head between his legs attempting to kiss his rear end and it it read” in case of nuclear explosion put your head between your legs and kiss your but good by.” I laugh and think how it may be appropriate for PF today.
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Talk to your Pulmonologist, they can refer you, Matrix is out of plant city and is a provider.
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Randy I wish I had your numbers when my lung issue was detected, you have a long time left. September 2016 my dlco was 16.09, that’s over 6 years, since then I did a lot of traveling. Now not so much traveling. I watch the dlco and to do that you have to the lung spirometry tests every 6 months. The 3 to 5 year is something someone averaged but to know how fast your deteriorating you monitor the lung breathing tests.
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After much searching other oxygen users I found the best solution for me was a quarter inch clear fuel tubing found in plumbing and taking a razor and slicing the tube to 6 inch length and slicing it open then putting the oxygen hose in the tube and putting the 1/4 hose clamp and attaching to my oxygen unit, works great and no more issues.
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john styles
MemberSeptember 8, 2022 at 1:52 pm in reply to: Everyday Challenges of Living with Pulmonary FibrosisI have made lots of changes, I try to remember to bend my legs and not bend over. This disease is so slow moving that 5 years ago I almost drown, did not realize that I had deteriorated. Scary. Elevation effect me, I am at sea level but when I go to 3000 feet my oxygen saturation dropped 3 points. I believe we have faith and take care of ourselves and live our lives to the best of our ability. If someone asks you to do something that can effect your breathing you have to let them know you have issues.
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Millie said above to re read the article because Zinc was taken with other 2 other additive’s and one not available. now I have been taking Zinc with the 2 additive’s and no improvement on breathing but blood pressure came down another 10 points. I will keep taking the above.
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john styles
MemberAugust 14, 2022 at 8:44 am in reply to: When You Don’t Want to Talk About PF AppointmentsI am 6 years into this disease, I call it the “stealth ” , because deterioration sneaks’ up on you. When people ask how am I doing I tell them “good” they will say “really” and I say yes. Cant see the reasoning for dragging out the details. I try to stay positive and informed, and believing in God helps. This web site is great for news articles, still trying out the 24mg Zinc with Nad+ and Sirtuin1, another member noticed the extra supplements. I am almost 70, I feel I may be cheated out of some years but then I really feel for the younger ones that have this disease, they are the ones being cheated the most.
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I will order and try it.
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I will order and try it.
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So much news on this website that sometimes these articles get by us, Thanks Linda for sharing. It was published here under news. https://pulmonaryfibrosisnews.com/news/eperisone-muscle-relaxant-seen-to-safely-treat-ipf-in-mouse-model/#:~:text=Eperisone%20%E2%80%94%20an%20oral%20muscle%20relaxant,IPF)%2C%20a
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Here is a easy page to read: https://pulmonaryfibrosisnews.com/news/eperisone-muscle-relaxant-seen-to-safely-treat-ipf-in-mouse-model/#:~:text=Eperisone%20%E2%80%94%20an%20oral%20muscle%20relaxant,IPF)%2C%20a
Looks like something we should look into, Thanks Linda.
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I sleep elevated, I also use a pillow length then horizonal. Maybe the length {of my body} helps push the deteriorating lungs higher, I do not know but I do get a lot of relief, if I eat after dinner even a oatmeal cookie { high fat } I have more coughing but am able to reduce or eliminate it with a couple of puffs of albuterol. If I am out of control and eat to much its a lot of coughing and I break out the prescription cough syrup. I suspect silent Gerd is the culprit of our problems.
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Time to dust off my bottle of zinc. good article.
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To laser or not to laser, huge question. We are fortunate Andy hall brought the laser to everyone’s attention. I personally think its more complicated then the ones who say it does not work and the people say that it helps. I think a lot of it depends on when you start the laser treatments, probably the sooner the better. Andy says his disease has stopped progressing, he is fortunate, as for me my lung disease march’s on but at a reduced rate prior to starting laser. When I started laser I had less then half my capacity left. To be more accurate my dlco was down to 16.09 when my disease was discovered and then went down to 10.6, in 2 years the dlco being the amount of carbon monoxide we remove from our lungs. After I was at 10.6 dlco I started laser and it goes down about 5% a year. I have a aggressive form of lung disease “usual intestinalis pneumonia. I have a damaged liver so no transplant and no drugs for me. As to how much laser to do, Andy Hall is the person to ask and he is on this web site.
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You need to take control of your medical situation. Always get copy’s of reports like breathing tests and cat scans. Read the cat scan, a diagnosis can be made from the cat scan. Get a second opinion from a pulmonologist that specializes in PF. This disease sneaks up on you, doing fine for the day, week, month, year and then deterioration and then it can level off. I have been on this road for 5 1/2 years and have usual intestinalis pneumonia, a faster advancing form of PF, Can not take the drugs and not eligible for a transplant but I am still here and living my life. Keep positive
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Sorry you missed the heads up. There are a lot of different forms of Pulmonary Fibrosis and most if not all forms gradually decrease the lung volume, in 2017 I was swimming and then could not get enough oxygen while snorkeling in area I normally snorkel and had snorkeled the previous 10 years and very near drown. Talking to another member who had the disease and he commented he almost drown doing a regular swim. So if you have our disease you should be aware that you could be in trouble if your lungs are compromised, sometimes the deterioration is slow but at different times. I truly believe a lot of drownings can be attributed to this disease.
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john styles
MemberJuly 26, 2023 at 8:37 am in reply to: How quickly can pulmonary fibrosis progress?Hi Steve, what supplements are you taking?