Best thing i ever did,, Diagnosed 15 2016. 15ltrs 24/7 and transplant 12/23. Went through 5-36 week sessions of rehab and it allowed my core to strengthen greatly. In addition to 3x a seek for rehab i did 3 days a week of light weight training, My chest muscles strengthened greatly and my recovery was easy because of it. There is NO excuse…

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Ill chime in by saying its absurd that those stats are even still on line, I was 5 yours into a diagnosis before i noticed anything at all. IGNORE 1000% all stats you read. they are not up to date in anyway at all, Do you and enjoy your life. I had my transplant 21 months ago and have never stopped doing since 2016. YES i have slowed down,…

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I have not missed a support group in over 2 years, pre and post. One of the most important things to do for your self awareness, education and recovery, Stay Away from Dr, Google and go to a support group every week. It WILL change your life!!

I completely ignore people that have no purpose in my life,, I dont waste my time even thinking about this subject and what others think. Move on live your life!!

Nope wont happen,, turn that sucker up to what ever you need to keep you at 92% or higher, you will always drop when sleeping.. Never ever listen to Dr. Google only your transplant team and pulmonologist.

Hi there..OKAY lets brake this down, YES I am on mycrophenalte due to some issues, mold, aspergillius, I am 14 months post transplant and the drug is perfectly fine.. You are on barely any 02 at all., I was on 15ltrs 24/7 and diagnosed in 2016 and transplanted Dec 2023. Now the 2 year bull shit,,, That is exactly what it is,, bullshit, Your…

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its based on your liter flow.. A portable O2 is NOT recommended if you are on 4lts or more. They are pulse activated and they are setting NOT liter flow at all and that is the issue with them, If you put your setting to 5 you are only getting about 21% oxogen or basically 1.75 to 2.25 liters. You are much beaten off traveling with a M60 tank…

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Number 1 treatment for Ipf. You can find a ton of information on it. Also. There are side effects that you should familiarize your self with. I was on it for a little over 2.5 years and had to go from 150 2x a day to 100. It is NOT a cure. It will buy you time before a lung transplant. The manufacturer has a great web site and support system…

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Diagnosed in 2016, winded all the time and coughing, my primary told me to see a pulmonologist and had c-scan done and BAM that was it. Basically went on with my life normally until mid 2019 when i started to get worse after getting the flu and ended up going on Oxogyn. 2 liters, Now on 6 at rest and 8-10 with activity and exercise and on… Read more

Regarding the “high cost” have you contacted BI, they have a program to help with payment and some even quality to get the meds, free from them. I have been on for 2 years now and it’s really nice.

Also i am reading here that many of you are diagnosed and then go on the OFEV with in a 3 month period of close to it, I was diagnosed in 2016… Read more

02 for a hour at 88 to 93 but if I move or talk goes as low as 78 with a 130 Hr.

that is one of your biggest errors. Your stat should never ever go lower than 92.   You obviously need 02 all the time. With those numbers you’re putting yourself in a compromised situation. Fainting, brain cels being destroyed and possible organ failure. Not good… Read more

many of us are mouth breathers and not nose breathers,I am one of them and it was a simple correction. I.now use a OXY MASK that is very soft and covers my mouth and nose, it is a real pleasure to wear especially when I sleep. You can also get a full nose/mouth mask from your dr with a prescription.  Good luck easy fix,…..OH and Im on 6-8… Read more

Im having a colonoscopy and i stopped 5 days ago, For sure stop BUT then again none of us are your pulmonologist or surgeon and I would not take advice from here, just what others have done but each case is different, Good luck

 

Frank, you must be on supplemental oxygen if your stats drop to 70 or 60 that is very very dangerous and an over the shoulder POC will not serve the purpose you need. You can ask your doctor to prescribe from your oxygen provider a C tank it is a small tank, it’s about 12-13 inches tall and you’ve been on 2 L of oxygen. It should last you all… Read more