Thank you to everyone taking the time to comment. Many of those comments make a reference to my positive attitude and frankly, I am somewhat amazed by it also.
The day I was diagnosed turned into a terrible few hours but around 3:00AM cause for optimism was placed in front of me by a remarkable individual. Lance is a respiratory therapist who was on duty that night and here is what happened:
The day of the diagnosis of IPF
The third day in the hospital is when they did the Hi Res CT scan and told me the diagnosis, IFP (Idiopathic Pulmonary Fibrosis). On that day I had a Respiratory Therapist (Lance) attending for the second consecutive night. He became aware of my diagnosis when his shift started and spent a few minutes talking with me that afternoon. I was quite shaken and as a result unable to sleep at all that night.
Anyway it was about 3:30AM the next morning when Lance popped into the room to check on me and chart some details in my files based on 02 rate of flow and SP02 levels I was maintaining etc. When he opened the door I raised my hand and he pulled a chair close to the bed asking if I wanted to come out of the cpap mask and talk. I was wide awake and said yes. Lance began telling me about some research he had been doing since he had last seen me the previous afternoon and wanted my phone # so he could send me some links by text. He said he was a firm believer in the power of high value nutrition, fresh raw food, vegetables and fruit juiced and eliminating all breads and baked goods, sugar etc. But equally important and very surprising was what he began talking about next and that was supplements, specifically Serrapeptase Enzymes.
This video is a bit long but quite worth watching
These are the enzymes from DR Wong
Now I was listening to Lance and beginning to feel some real mixed emotions, like false hope stuff and snake oil etc. But I continued to listen and try my best to keep an open mind. Lance made the statement that he thought this could be a cure for this incurable condition. Well he was very sincere and not a fanatic wild eyed nut job for sure. He retold a lot again the next day when Rhonda was there. Over the course of the next few days I was relentless in pounded the face of my phone and sent myself emails to capture what I was finding.
More research brings up this
This is a Urologist who was diagnosed with IPF and is taking the Enzymes
Reading what Dr. Trifelos has to say is quite encouraging. It is a shame that the FDA and big pharma have such a lock down on things that may in fact be very beneficial. I have found enough in the past few weeks to realize that there in a strong likely hood that there is much more to some of the alternatives and supplements than your MD will ever discuss with you. BIG MONEY – if it is not there no one wants to get with it. Further reinforcement of this thinking results from correspondence with others in Europe, Africa and the mid east that have this condition and are using the enzymes along with diet.
I have learned that the food choices, particularly juicing of raw veggies and fruits will add to the mix of enzymes greatly. I get mixed signals for the dosage on the Serrapeptase but what the hell if I take a bottle a day I don’t care as long there is a chance that it works. Interesting thing is I came across these (enzymes) and bought a bottle when I was in Colorado thinking I had clogged arteries and some research at that time indicated that Serrapeptase would be great for reversing that condition! So I am taking those now in a very high dosage. I have two months worth of the same enzyme from Dr Wong waiting till I begin the juicing when we get to MO. It is a job doing that (juicing) and a couple of weeks will not be a big deal in the scheme of things.
So yep I plan to be a good food choice convert and actually have begun already. I hope an occasional burger on lettuce will be ok but will limit that to once a month probably if even at all. No sugar which means there will be no Ice Cream and that is going to really suck!
Back at the ‘ranch’
Then I leave the hospital and get back to my computer, the folks (owners) here at Riverbend are super people and worked out an arrangement that is very accommodating for us. Rhonda is in the office a few hours each week so I am here with my computer and punching the keys like a madman.
In mouse models, miR-29 not only blocked pulmonary fibrosis, it reversed fibrosis after several days.
I called the Pharmaceutical company after getting nowhere trying to talk with someone at Yale (they were very non committal and only wanted to know if I would like to schedule an appointment after getting a referral). Anyway I talked with the CFO of the pharmaceutical co and he said they hoped to have it in front of FDA within a year and begin clinical trials shortly after.
My best hope is that I can get quality care in KC at KU Medical center and hold progression of this off till a cure is available.
Meanwhile the Enzymes are something that may provide some relief and possibly even some reversal of the scaring in my lungs. Nothing to lose, and everything to gain so full steam ahead.
We have some things to get buttoned up here before we leave. It is really cool stuff that happens out here regarding friends you make along the way. Our route will have us spending the last two nights on a property in Sedgwick, KS with Leroy and Ann Willis, full timers who travel in a vintage bus called Liberty. We met them here at Riverbend last year and they invited us to drop in on our way north east. They have a barn where they pull liberty into there and a power pedestal for friends to stay along side. That will be a great way to spend what could be the last nights on the road for us for a while. We do plan to be FT roaming next winter as I have said, but I am really happy to have the opportunity to have a sure bet like that and socialize with fellow FT RVers for two nights before dropping the jacks at the farm.
It is amazing how when needed most, the right people are placed in front of you and it can change everything. I feel very fortunate. Thank you Lance.
Future posts will not be so heavily weighted to my medical condition, I promise. I wanted to record this for a number of reasons. I really believe the enzymes are a potential benefit for anyone who chooses to try them so do your research and decide for your self.
Thank you for your support Amazon shoppers – every purchase is greatly appreciated.