[Jane McBride]

Ihave been using the Inogen portables for several years. I started at 3. I am now using the Inogen that goes up to 6. I was unaware of the discrepa0ncies mention in these replies because the Inogens seem to work for me. I have car chargers in all of our cars and take an extra battery with me now for occasions like this afternoon when my granddaughter invited me to the movies and the movie ran a long 3 hours. The Inogen does not to the advertised 8 hours at the 5 level that I require. I switched batteries in the theatre and was able to enjoy the show. I also take the regular charger with me to gatherings and friends and family understand I need a seat near an electrical outlet.
The Inogen runs on pulse so I am fine doing quiet things, cards, coffee etc. I am much more comfortable on the continuous flow provided by my in house condenser Walking is slow on the pulse driven portable but easier when I sling the tank onto the seat and just push the walker around the museum etc.
There is no portable that goes beyond 6 so I will eventually get to the wheeled bottle tanks which are heavy and awkward. I intend to find out more about liquid oxygen mentioned by one of the respondents to your query.

Go gently until you know what makes you comfortable but don’t let this IPF deter you from adapting and enjoying life.

[Jane McBride]

This was of great interest. I am on Ofev and since it seems to be stabilizing the IPF at the moment I am just trying to find ways to deal with the side effects comfortably. There seem to be any number of us dealing with the temperature range so I think of it as a side effect without official medical affirmation.
Almost every evening, I have been freezing. Sitting wrapped in jacket with lap robe and heating pad has helped. I have used the old fashioned idea of warming the bed (with a heating pad at the foot, as a ‘warming pan’) before climbing in, also helps. Removeable bed sweaters are good, especially when you wake up in the middle of the night because it is now too warm and you don’t want to wrestle with heavy pjs or heavy bed socks. One more comfort control I can suggest is two light weight duvets. Double when you are so cold and want to snuggle, then just toss the top one later when it gets too hot.
Fortunately, the warm times are tolerable without heavy sweating so far

[Jane McBride]

Thanks for this subject, Mark. I am facing a very cold winter here in Illinois and would like some info on how to best handle my Inogen 3.  The hose and canula get very stiff as well. Wrapping the tubing up under scarves etc. helps but was hoping someone might have a suggestion as to acquiring tubing that doesn’t  get hard and doesn’t start pulling away from your face etc. the minute the really cold air hits. Getting in and out of the car etc. for church, library or shopping has become a production. I know this sounds like whining but I am trying to eliminate as many frustrations as possible and get on with life with IPF as naturally as I can. PS A good room humidifier helps even if the furnace has one already when you get zero and below wind chills.

[Jane McBride]

Hi Fred and Wendy,

I find smaller meals helps with fatigue as well. The only draw back is balancing the meals and the Ofev dosage, which requires a “full meal” according to the instructions (has a similar problem with previous meds). Found I can balance both smaller meals and stave off some of the side effects of Ofev at the same time but it takes practice and time spent ‘noticing’ what to eat which was difficult for me. I think it will work for most people but will require trial and error for an individual balance. For example, I am allergic to fish but a friend with IPF finds baked or grilled fish works well. Too many vegetables seems to increase the most annoying side effect for me, yet vegies are supposed to be the healthy eating regime. May I suggest, if the digestive side effects of Ofev are a concern, time and effort spent constructing small meals that are acceptable to your system are well worth the effort.

 

[Jane McBride]

@janette

 

Hi Janette,

Like you Ofev seems to have stabilized the progression of my IPF, lovely to hear. However, I too had difficulty with the intestinal side effects on the 300mg a day.  Not as badly as you but badly enough to plan my life around whether or not I could plan to go out with friends etc. My doctor changed the dosage to 200 mg per day and so far it has been very much easier to control the side effects.

You may wish to try 200mg after taking a break from Ofev for a month or two if you are no longer stable. I took a break of about three weeks after discontinuing 300 mg. for a really bad cold (not quite a flare) and found returning to the Ofev at 200mg much easier to deal with.

Also, I found selective diet helped. I keep salads to a minimum and vegetables in small doses. Carbs and proteins seem to help keep the diarrhea to a minimum. No problem for me as steak and potatoes are a favorite.

I will be tested for results at the end of the year, after 5 months on the  200mg.  I pray your results will be good ones, Janette.

Jane McBride

[Jane McBride]

Would appreciate recommendations for Pulmonary Rehab in Northern Illinois.

 

[Jane McBride]

Thanks for the tip of wearing the cannula at the back. It has really given my ears a rest and doesn’t dangle down the front getting in the way of everything.  I wear it 24/7 and this suggestion was really a relief. Plan to  rig some kind of easy belt to help with walking around doing housework, etc.

Am going to experiment with the cannula on my Inogen today. I usually tuck the excess tubing into the straps on the backpack anyway, so I look forward to it working very well.

As to cleaning, I change the soft cannula (much less irritating than the stiffer ones) as needed and keep an eye on the lengthy tubing again as needed or by instinct. Seems to work well.  Change my Inogen cannula on the same look-it-over and change by instinct as well. Haven’t run into any problems, although I must confess to being a bit of a stickler with hygiene.