Ron Johnson
Forum Replies Created
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A statement from the Pulmonary Fibrosis Foundation:
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@drandyhall @steve-dragoo
Dr. Hall, PFTs are quarterly.
Steve, your prayers are much appreciated. God bless.
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Update to laser therapy results: @drandyhall
Here are the actual numbers from my last two PFTs, before and after laser therapy to give a more accurate view:
FVC FEV1 DLCO
1/9/19 1.97 1.73 9.46
4/30/19 2.04 1.72 9.80
These numbers indicate some improvement, but generally stable. As I said earlier, I do feel better fro multiple reasons.
Best, Ron
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@charlenemarshall
Opps. Sorry, I did a copy /paste.
I did want to add that my nausea is now gone.
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@charlenemarshall,
Charlene,
I started taking Essentialzymes 4 from Young Living when I was on Ofev 150 mg. It helped but not enough. I then moved to Ofev 100 mg which helped a lot more. I still had residual nausea at a very low level but still too much. My wife suggested Allerzyme which is another YL product. Both of these enzymes help the pancreas. My pulmonologist said as we age the pancreas looses some of its effectiveness. I also take a probiotic called Life 9, but was taking that all along. The constant nausea is very debilitating taking away energy. Hope this helps.Ron
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@drandyhall
I have completed over 48 treatments of laser therapy. Below are the numbers for my two most recent PFTs, one before starting the laser and one after. I am also taking OFEV (100 mg), and multiple supplements for nausea control (successful).
FEV1 % Pred DLCO % Pred FVC % Pred
January 9, 2019 58.9 38.1 49.0
April 30, 2019 58.6 39.4 50.6
Volume is considered Moderate, while Diffusion is considered Severe. This report is considered Stable, which is great news in the world of IPF.
I believe the laser is helping, but I am also doing physical therapy, massage therapy, exercise, and taking supplements for general health. There is no way to tell what is helping and how much in specific numbers, but I plan to continue all of these therapies moving forward. Subjectively, I believe I feel better, with a little more energy and more good days than bad compared to first of this year. However, I think we all recognize the emotional component of this disease, which has a dramatic effect on the physical. Navigating the balance of how much to do when feeling good and how much not to do when feeling bad is an ongoing learning process. Your comments on this forum have helped. We all appreciate those who brought forward the opportunity for laser therapy.
I look forward to Dr. Andrew Hall’s @drandyhall new protocol when it is complete. Questions for Dr. Hall: Will the size of the laser spot (or laser head size) be included for energy density reasons and will the sweep rate across the skin be included? I have had three different technicians apply the laser as well as two different lasers, and they all use a different approach. The threshold of pain (too much heat) is a little hard use as a guide. Also, it would be good to include protocols for both Class 4 lasers, the K-laser and the Lightforce laser if possible. As an aside, my physical therapist asked why the laser power of 10 watts was so low compared to the normal 25 watts used for muscular or joint therapy using the laser? My guess is its the energy density that varies with the type of laser head being used…? Of course, the sweep rate and energy density are directly related. Thank you Dr. Hall for your dedication to helping others with this challenging disease.
God bless all of you as you continue this journey to maximum health and a positive outlook on life. Ron
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Katie ( @katiebagshawe ) , There is a wealth of information on the Internet (Youtube, for example). As you move along you may want to consider using an application that allows you to do post processing to enhance your images. Examples are: “Photo”, if you use Apple computer, or Lightroom. You will eventually want to shoot in Raw format which preserves the maximum digital information. It is a great hobby and allows creativity and capturing memories.
All the best, Ron
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@shumita,
See pulmonary fibrosis.org under Announcements regarding caution for stem cell therapy.
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I was taking Nexium for GERD, then after heart bypass was moved to Famotadine (OTC is Pepcid at 10mg vs prescription at 20 mg). My pulmonologist does not recommend proton pump type meds for this condition. I continue to have stomach issues, but they are likely caused by the OFEV I now take. I am moving from 150 mg to 100mg to see if that helps.
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Charlene @charlenemarshall
Great discussion on flying. I needed that information and hope to fly from TX to CA in August. We may take a short trip before then to test the experience.
Regrading Hawaii: Having been there 3 times here is my assessment: Maui is more populated but has the most diverse options for sightseeing: The coast along Maui bay is spectacular, the cities are good for shopping, the mountain (Haleakala) is great as well as the Low Country is peaceful with beautiful vistas as you approach the mountain. Then there is the Road to Hanna. It takes a couple hours to get there, but the trip provides many opportunities such as rain forest, views from the highway, black sand beach, pools for swimming that look out on the ocean (but hard to get to), and interesting features beyond Hanna.
The Big Island is also spectacular with visits to the volcano, taking photos as the sun sets along the beach where the solidified lava goes red. We enjoyed visiting the coffee plantations, seeing the red berry beans in the groves, the processing approach, and doing coffee tasting. There is much history here also.
Kauai is called The Green Island because it is. It is much less populated than the other islands, so it has a peaceful feeling with much less traffic. While it was extraordinarily beautiful (anywhere in Hawaii that isn’t?), it was not as interesting as the other two for my wife and me. But if pure relaxation is the goal, then Kauai might be right.
Hope you have a delightful trip, Ron
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I have just joined this forum and would like to complement you on your excellent leadership for PF patients. Your kindness and care for others comes through and your carefulness to maintain the proper perspective is truly appreciated. My prayer is that you and others who suffer this disease may find what we need to better our health and find “peace which passeth understanding”.
Blessings to you, Ron
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I was going to mention the same prescription as I just started it a few days ago. Previously my nose would start running as soon as I put on the cannula during the day. With this spray the problem has improved substantially with almost no nasal flow, even when eating.
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I was hoping stem cell would an answer or least have a high probability to make it worth trying. From what I have seen, the risk is too high as of this time. Hoping research will yield a solution.
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Lnour,
You are correct. My error. It is FVC that I am comparing. Sorry for the confusion. The DLCO was identical in the two comparison PFTs.
Regards, Ron
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Tamara,
The combination is on the WEI website under Respiratory. It includes Soup A, Soup B, and LC Balancer. Take three times a day. I hope it helps others as much or more than it has helped me.
Regards, Ron -
Hope it helps you Steve!
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Charlene,
I have just joined this forum and would like to complement you on your excellent leadership for PF patients. Your kindness and care for others comes through and your carefulness to maintain the proper perspective is truly appreciated. My prayer is that you and others who suffer this disease may find what we need to better our health and find “peace which passeth understanding”.
Blessings to you, Ron
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Andy Hall,
Thank you so much for sharing your experiences and your research. I was diagnosed with IPF in October 2017 and have lost ground over the past year but have recently felt much better. I would appreciate a referral for someone who does laser therapy (Class 4) near Ft. Worth, Texas.
Regards, Ron Johnson