There are many in my support group who have been under care greater than 13 years!! You are not the lone ranger there!! The Marijuana industry is akin to Big Pharma!! Huge Profits and additionally, MJ gets promoted on its efficacy in several disease processes without any scientific backing!! It may work for you–or not!! You have no way…

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I would be interested in whatregimen you are on!

Wondering where you live, I might contact my electric folks.  Im finding I am less cold tolerant.  It is hard on the Electric AND Fuel oil bills.

 

 

We just need to keep doing what ever we can. It is sometimes so disheartening.  Thank you for your response!!

Thank you

Thank you for your response!!

Thank you for your response!!!  Do you track your O2 sats while swimming. If so, how do you manage to do so?  O2 sat monitor poolside or ??

I do need supplemental o2 to exercise.  The one activity I’ve found that I can do without O2 is swimming.  I’ve always loved to swim and while on vacation with my family asked my daughter to standby with my O2. I took the plunge in a warm salt water pool and was able to swim back and forth without any shortness of breath and NO oxygen.  I am… Read more

I cannot imagine taking flaxseed oil along with my ofev.  Flaxseed oil and seeds gave me diarrhea before my diagnosis. I find I need to eat protein and like many others need to take my medication mid meal. The pharmacist strongly recommended protein foods with the medication. He went into an explanation of why protein foods are best with it.… Read more

I find that physicians are unaware of macrodantin (Nitrofurantoin) role with IPF. It may have actually caused my IPF as I was on long-term therapy for chronic UTI’s.  Yet, I continue to have it prescribed for my UTI’s. I always ask them what they’re prescribing and find Physicians are very willing to switch RX once I explain that it may have… Read more

I do use power plugs on AK airlines without problems or questions. I have not flown other airlines.

I believe airline requirement is 2x flight length of battery life. Not 2 times amount of oxygen. I have used two INOGEN’s to increase O2 supply utilizing two nasal cannulas. Both would have to have twice the length of flight worth of batteries.   Car travel would be more doable and think you could set up respite care in a city half way in… Read more