Ben Robinson
Forum Replies Created
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I also tape one 11 Hour small hand warmer to the mask and the heated air helps a whole lot I have been using rebreather masks from vitality medical and changing every week. I will check out the above machine
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Wei only works if you take all those capsules every single day. If you skip days or weeks it is not as effective at all. It is a lot of tablets to take every single day with no slack combined with your other medications on top of it. FYI
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That runs $1500 a month so it would be $3000 for two months of the soup a and b And that other one plus the CL or clear lung which $189. $1312 plus the 189 is about right at 1500 per month to throw the kitchen sink at the disease. I think I am getting some benefit. I am on the Ofev too to hopefully slowdown the disease progression. Expensive but I have a good teleworking job and luckily can afford it.
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I think I need an exorcism The thing has a soul. I feel like it might be contributing something to my general improvement. This stuff is all they had 1000 years ago. I will post back after the holidays when I am done. Anybody know a good witch doctor.
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I been on Wei for three months and like the others it is hard to say. It may have helped getting my inflammation down along with my prednisone bursts each month. Did you know that fibrosis is actually inflammation at first ? There are transplant pushing Pulms that would disagree. they also hate my pred 5 tablet bursts prednisone – why- the only thing that I know that works. 19 veggie capsules a day plus 6 CL for two months. A lot of capsules to choke down with my many other pills. I will let you know but it is hard to tell which is working It’s my butt so I’m just throwing the kitchen sink at the PF. Hail Mary time.
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I mentioned I was rejected for lung transplant because I offended a jerk doctor then realized he did me a favor. He said I was frail and I said I could kick his arse. I curl 45 what do you do wimp. Pulmonologist = Lung Transplant Salesman. Outcome Percentages are poor. I stand proud and tall of my self advocacy aka big mouth. So I looked harder at alternatives that were left and found this fabulous lung and heart doctor and a new cardiologist topshelf high level and the new pulm wants to examine other alternatives first. Not a salesman but maybe a real doctor exists out there God works in mysterious ways. More appointments but god helps those who help themselves Fight fight fight. Raaaaaah. I’m trying to inspire all you tired whiners. LoL.
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I too appreciate this information and those taking the time to convey it. I was recently declined for a lung transplant probably because of my outspoken mouth calling the doctors antics and contradictions as i see them. After all of that testing trials and tribulations. I left feeling like they had done me a favor when hearing all that you go through afterwards and the disturbing percentages. I have some low numbers but have been improving mostly thanks to my own education and common sense. I also was not so sure i wanted those idiots cutting on me, they didn’t even express confidence that the surgeon knew where he would cut. Disturbing in the least. The cellular innovations successfully implemented in the Covid vaccines leave me hoping that they also may come up with something in that arena for lung disease such as ours. I feel that perhaps i might rather go my own healing route and die if it comes to that, but i will give it the winter and decide on whether to restart with another hospital and roll the dice on the russian roulette of transplant. Best of luck to all here.
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At 30,000 feet on a plane, my interstitial disease lungs go bonkers and the saturation levels drop like a rock. Be sure to take plenty of oxygen on the plane.
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I have the enlarged prostate and difficulty with urination for which i was prescribed Flomax. After two months it is working well. Not a good issue to have when you are on Lasix for fluid also. All i do is pee. I have also Lost weight and have gone from my former body builder mass to skeletor the bag of skinny bones. The fluid also accounts for significant body weight fluctuation. My appetite is poor and greatly affected by my PH. These diagnoses were again dysfunctional by the doctors in between specialties and cutting their time short. My own advocacy and education was essential. Work outs are difficult with this condition also. Developing muscle and gaining weight without excessive fat is quite the challenge but i was just cleared to try if i can. Join the PF club and all of its many aspects- lungs heart pee skinny and the whole works.
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Prednisone has been my most effective medicine. 40 mg bursts for five days every three weeks have worked best and minimized the side effects. The doctors also have me on 7.5 mg per day in between but I am not sure what that does. Every three week burst peels down another layer of inflammation. My lungs are now significantly healed from that regimine but too much damage from the past has already occurred causing type III PH. My biggest side effect concern was Diabetes which I seriously wanted to avoid and that is why the bursts. I have experienced a side effect when taking it for longer periods before I changed doctors where I had no fear of confrontation and no filter causing some incidents to occur. These incidents are minimal with the bursts and my awareness has helped me control them. I also noticed that the benefits of prednisone subsided after 5-7 days anyway. As Mark says the affects from prednisone and many medications vary with each person. It is notorious on the internet and doctor opinions that dosage under 10 mg and durations 5 days or less have no side affects. I hope this helps in your evaluations. I am a prednisone fan.
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Keep fighting til the end is my motto on this. Go down swinging and take some doctors with you. LoL Cheers! Difficult days coming for me a test, a doctor, a drivers license renewal and a vaca with the grand kids All a struggle and an imposition on others with my condition at hand and oxygen in tow. Battle Speed! Raaah
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I think I am seeing benefit from it. Just a lot of pills to take every day. I think it is helping along with my other meds.
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I dropped down to 100 mg OFEV and have zero side effects now after a three month pause between the 150 and 100 then started the 100 a while back.
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Yes I am taking both. I have PH and PF.
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Lnour
Dr Lobo is a nationally reknowned doctor whom I had appointments and discussions with regarding stem cell therapy and is the credible source of my information. He was brought up by another participant in this forum to which I responded It seemed quite pertinent to the subject
The lung institute at least used to do stem cell therapy from bone marrow amd was well known when I called there a couple years ago maybe they still do ? I don’t care because I am not doing it with them that’s for sure I don’t know if any other private firms
You should do better research because systemic injection of stem cells comes with untested risks per Dr Lobo. You will kill somebody with your sunshine blowing blabber
Again best wishes to all in there pursuit of stem cell therapy and hopes that the new big pocket backed clinical trials bear fruit
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I am not sure but it might be helping me. I improved but I am not sure if it is the prednisone bursts, the Wei, the disease cycle, the oxygen adjustments, the Tyvaso or the Ofev. I am not going to chance stopping the Wei in case that is a contributor to the upturn. I was breaking the capsules because I didn’t want to ingest all of that plastic. Also because 19 pills is a lot to swallow on top of the many meds I already take. Then I found out that they were vegetable capsules and not plastic so I didn’t mind putting them in to my system. Also the pile of marijuana hemp looking inerts in a drink was not very tasty. So I got used to the capsules and routine. That’s my story with Wei. Throw everything but the kitchen sink at my disease. Stem Cells included drove a long way but were a no go.
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The Place is called the Lung Health Institute on line and are probably the oldest private cellular treatment around that Hopkins doctor told me they were after them. Dr. Lobo really did impart the dangers to me as I described. I wish you all the best of luck and hope that you do find something somewhere with the stem cells, but I do think Lnour is talking out of her rear end on this.
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I had to take medical classes on line to be a doctor to manage my doctors and my disease. I agree that second opinions from such high level places are a smart thing to do. But I have found that they all lack knowledge of interstitial lung diseases. There are 200 types. Did they tell you that? I found mine on NORD for rare diseases. One major factor in determining which disease you have is the inflammation which is felt and produces lung mucus. Lung mucus is different. Like the goo dripping from the library cards on ghostbusters. If you have that it will keep hardening into PF as time goes on. Prednisone bursts are the only treatment. 5 days at 40 mg the one day at 20 mg every third week then to 7.5 per day. Higher doses cause side effects you don’t want. The pompous and learned will say I am full of poo. But I know I am right and I don’t care about the dam doctors disagreeing and I learned the hard way. The first one now says I was right after seeing COVID work and apologized. For what it is worth take it to another level as your own advocate. These Pulmonologists are half lost.
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Dr Lobo is my Doctor and I went to see him for that reason. He has had to abandon that program due to bonding amd money. He also made it clear that his systemic stem cell injection is not for everyone and has dangers as I described to some level above He is however a very good pulmonologist but it was a four hour drive and my PH didn’t like that trip. They are nice friendly smart people down there. The City of Medicine it says as you drive in. Also keep in mind that with an injection of stem cells they scatter all over your body. A large percentage end up in the liver. Who knows what that does. The hope was that the like kind lung cells by doctor lobo might migrate to the lungs by attraction. Who knows. He will be the first to tell you that it needs a clinical trial. Be wary of all studies using mice. They are different than people. The Lung Institute uses bone marrow I believe as a source for their stem cells which a also systemically injected. Johns Hopkins attacked them for being crooks they say. Some could say that about Hopkins. LoL. Good luck I hope this helps your decisions. Ben.
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Yes I have PH lungs which is a complication and it is the most debilitating aspect of my disease. My lung PFT scores hardly decline but then there is this pulmonary hypertension from the narrowed hardened lung blood vessels and all which is worse.
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Sounds like Pulmonary Hypertension to me Classic symptoms that I have experienced. Most Pulmonologists miss it too. Unfortunately a right heart Cath is needed to precisely diagnose. This is often caused be lungs also or calcified arteries and veins or both.
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These posts were very helpful as I am taking the Transplant plunge this fall. Thank you very much.
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Not approved by FDA and only available at private companies of suspect success rate lets say. There is also some danger involved in the treatments injected. China has a good trial going where they inserted by bronchoscopy instead of systemic injection. But I would stay out of Wuhan, LoL. It all sounded good to me too and I looked deeply into it, but it was a no go. So I am resigned to the unpleasant transplant route spinning the six shooter with three bullets and praying for luck. Wish me luck.
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I take Gabapentin. It works quite well. Two tablets will give you a good sleep, one will be mild sleep and not effect your wake time.