New to oxygen

[Arjun Tuteja]

Additionally, I cough a lot.

Arjun

[Scott Robertson]

Hi Arjun,

Sorry to hear about your diagnosis of IPF.

It might help others give advice to you if we knew a little about you and in particular the fears you have. You mention your independence so this is obviously very important to you and rightly so and is likely something that lots of people with an IPF diagnosis must wonder about and perhaps struggle with.

There is no reason for you to lose you’re independence as such, you just need to work out how to best manage your symptoms more effectively and this forum can certainly give support and advice about that. I would also look to see if there are any local support groups in your area as they are a fountain of knowledge.

Looking forward to perhaps hearing more from you and learning where you are on this IPF journey…you are on oxygen but what type, portable, cylinders, amount of oxygen, are you mobile, are you active , where you live etc can make it easier for us to perhaps narrow our help to you.

Take care

Scott

[Arjun Tuteja]

Hello Scott

Thanks for your response.

Besides independance in general, to what extant can one hope to be active? For example, I used to walk about 2 miles daily, Taking care of oneself, gaining some lost strenghth, being able to drive etc. I was very discouraged, trying to get back to normal life, i.e. taking care of myself and everyday chores of life.

I was started on oxygen about a month ago.

I live in greater Detroit area, and trying to find local support group/s.

I use Oxygen constraitors, one for each floor, and a portble one for out of the house.

If you or somebody could share his/her journey from starto the present state, I will appreciate and thank you.

Arjun

[Temple Mayo]

You might ask your doctor about benzonatate for your cough. It helps me greatly. Good luck.

[cpfeln]

I am also relatively new to oxygen. I was diagnosed recently with pulmonary fibrosis with emphysema CPFE. I am on oxygen 24hrs a day. I tried oxygen bottles which were very cumbersome. I switched to a portable concentrator. I have a bad back so I purchased a tiny luggage rack and attached the concentrator with Velcro.

My problem is my oxygen lines becoming tangled and pinched off.

[HughL]

I am 80 and have had IPF for 9 years and been on oxygen continuously for 8 years. I am up to 8 liters a minute now.

My first year I could be off oxygen while sitting etc but it got worse, I don’t want to be the barrier of bad news, but as the disease gets worse the only thing that can keep you moving is medical oxygen.

I was able to even ride my motorcycle up to last year as long as I had a large oxygen tank strapped to the back of my bike. Sad to say I just can’t even get out of the house much anymore.

[Terri]

I use pure honey for my cough, a teaspoon at a time, at bedtime, or anytime I need to be on a long phone call. It helps a lot. There are honey products you can buy, too, that can help.

I’m 60 and on oxygen only for exercise though I may need to start using it for chores around the house as my breathlessness is increasing. I use a small pulse oxygen tank that I carry in a small backpack when I walk/hike outside. It’s a pain but it helps me to be more active. This is my new normal.

[David Bennett]

I’m 79 and was diagnosed in 2019. I started oxygen and Ofev right away. I had a CT scan about 10 years earlier for another reason, but the radiologist noted an incidental finding of “a pattern suggestive of IPF” that my medical care team did not pickup on for follow up. So my disease had an extra few years to progress.

I was stable in disease progression for the first few years until I got a viral respiratory disease last winter. I was better in a week, but not mostly recovered for several more months. My gas diffusion capacity was down about 10% 2 months later and won’t know if it was transient or permanent until my next PFT in 6 months. The end result was that I was bumped from 3 to 4 l/m with activity or sleeping.

So, the end result is that I am still active and independent. The secret is to pace yourself and take breaks as needed. I still drive, hike, kayak, bicycle, sail, and take care of my yard. It all takes a little longer, but that means more time to enjoy what you’re doing. Stay positive and as active as you can be!

[David Bennett]

I didn’t mention that I am generally off oxygen when sedentary with sats in the middle to low 90’s, but any extended activity requires 2-4 LPM.

[Millie]

Hi Argen:

I was diagnosed 2 years ago and am an 84 year old female. I have to use oxygen 24/7. I really don’t find it inconvenient at all. I’m on 2 liters. I have 88% of my lungs that are still working. I use the Inogen portable units and manage to go everywhere as I did before being diagnosed. I exercise daily, go to the beach and take long walks and have even ventured into the water on a calm day. You just have to accept it as a new way of life. Keep a positive attitude. Remember, there is always someone else who is worse off than you. Hang in there.

[Arjun Tuteja]

Thanks for the replies/posts from all of you. I will try to respond each.

Temple Mayo – Thanks for the suggestion. Tesselon pearls, or Sodium Benzoate, gives me choking feeling. Hence, I am unable to use it.

Hughl – Thanks for inspiring story of your journey. That gves me hope. I shall try to emulate your success in maintaining your life style’.

Terrig- Thanks for your suggestion regarding honey. I already use it with good temporary effect. I get additional temporary relief by using liccorice root pieces in mouth, as well as mixing the root powder with honey and kind od licking it. If yu or somebody else is interested, liccorice root and powder is available from Indian Grocery chain, Patel Brothers. The root from there is big piece. Somebody told me that it is also available from Amazon in cut form,

Davis-Bennet –Thanks for your experiences. They inspire me to keep working at it, so I can achieve capabilities described by you and others.

Millie- Thank you for your inspirational story.

Thank you all.

I shall try to emulate your positive experiences.

Arjun

[Karen Martin]

I’m a 73-yo female and was diagnosed in January 2018. Like everyone else here I started off needing oxygen only when active. That progressed over time to where I am now using 15lpm when I am active and down to 2lpm at rest. I also use a CPAP at night with 3lpm oxygen. You have to get used to the idea of pulling/carrying along your oxygen. When my needs got so high, I learned to bring along extra tanks. I put a full one in the front seat of the car for driving to the doctor, to visit family or go to the library. I then switch to a full tank on the dolly that I have in the back of the car to go in and do whatever I need to do. Because I can lower my O2 when I am sitting down, that tank will give me a couple of hours time. Then, I still have O2 in my “travel” tank to get home. It has been trial and error to get here, but it can be done if you just get creative. Depends on how much you want to do something and how well you can accomodate your needs. I wish you well, Arjun.

[David Bennett]

I’ve been taking turmeric for several months now with consistently good results. Many, if not most, prepared foods have high inflammatory indices that systemic inflammation and mucous production. Curcumin in tumeric binds both oxidative radicals and pro-inflammatory molecules from your immune system. You can try to isolate and avoid foods that stimulate mucous or take something. Tumeric is both safe and free of side effects. I take 2 500mg capsules twice a day with food. Ground black pepper improves absorption, so I add a some to my food, probably would anyway.

[Penny Rylee]

I am a 76-year-old female who had to go on oxygen this last March. I live in California where the weather is pleasant, most of the time, and I have always loved to hike in the hills and work in the garden.

The company that supplies my oxygen is horrible!!! It has taken seven months and I am still trying to exercise and do my normal tasks and I am under oxygenated all the time. They talked me into this fill-it-yourself system that is useless. The canisters are so small I have to change them every 20 minutes, and that’s at level 6.

I am now trying to get the large canisters (E tanks, I think) but they will only give me one or two. I really need at least five because the respiratory therapist at Stanford said at level 8, the E tank will only last one-and-half or two hours. I would use that up in one hike.

I don’t know which is worse the IPF or the oxygen companies! They should be ashamed of themselves!!

If you don’t exercise as much as I do oxygen can be pretty simple: You have a concentrator at home, and you can get one of those portable concentrators which you have to pay for yourself, and even though mine says I’m at level 6, it’s really only giving you 3 Liters per minute. But that’s good for working in the garden and going shopping, etc.

Good luck and thank you for bringing up this topic.

P. Rylee

[David Bennett]

My sister had a combination home unit & and tank filler when her portable concentrator could no longer meet her flow needs. E cylinders are available for about $80 and up on Amazon if you wanted to buy your own. Sometimes we have to adjust our activities to our physical abilities. Shorter hikes more often is an option. I’m still doing OK with my concentrator, but do have to pace myself with several activities. The disease is certainly inconvenient, but accepting and adapting to the forced limitations is the only way to move forward. I don’t give up anything if I can change my approach and still do it. I still hike, bicycle, kayak, yard work, and sail, just more slowly.

[george-poulsen]

So, I’m 83, male and feel somewhat wed to my Inogen G5 Concentrator 24/7. have had signs of IPF for 10 years at a lesser level identified in x rays etc, but two tears ago my breathing was getting more difficult and they said IPF of a Resistive type. My personal feeling was at my age I did not want to start an expensive drug with no direct proof that it would turn around my condition. I’d rather not have to deal with other side effects etc. So, i have seen this as a kind of challenge as to how to deal with it while able.

First, I continue to research for more data on solutions (My Doc says only Ofev for my particular issue) and trials and drugs and methods that may help. Trials seem to be one disappointment after another in results for “reversals”. Latest hope was Saracatnib but a call to them (Fiber Gen – Sarah) indicated that even those failed. So there are others to look for and follow. I believe there is a great deal of activity in pursuit of scarring reversal and with today’s technology I hope it will come before too long.

Meantime I bought a senior walker Rollator which makes my mobility much easier since I set my Inogen G5 (8#s and too heavy for my shoulders) in its small wheeled unit on top of the seat which makes moving around much, much easier and lets me carry things as well. I also wound up purchasing a number of the very expensive Inogen 16 cell batteries for backup and always have one on the charger and one more in the unit running and several in reserve. As I type this I sit at my desk with Rollator and G5 unit next to me and also plugged into the fast charge unit at my desk which can bring a charge up faster than the separate charger they sell you on line, so any time I leave my desk I just unplug and usually have a full battery good for about 3 hours on the L5 setting I now use. I have another unit in the bedroom called Inogen At-Home, 120volt plug-in not portable that I use when going to bed. It gives continuous flow O2 at my up to L5 setting. The setting is not so important to me as is the fact that I wear a recording oxy watch device that shows I can maintain 92-98 Saturation at sleep.

I can drive if need be or usually wife drives and I leave my Rollator in garage and simply pick up portable with two wheels and sit it next to me in car and then use in store if I have enough energy when I get there. My reserve oxygen level is quite low (about 25%) and even with my portable I have to be careful since I run out of walking and breathing stamina very quickly even on the concentrator. However, last weekend I found it wasn’t too bad to try going to dinner with family and setting O2 concentrator next to table. People are pretty understanding and helpful in this respect.

A tip for anyone using the Inogen products is they have a very flat turn on/off button and its very hard to press, so I found some small 1/4″ round felt type stick-on buttons (for cabinet and doors )at Lowes and put one on the on/off buttons and it makes it 100% easier to turn on and off.

In summary, you and I can keep on trying until it doesn’t work, its kind of a challenge to be innovative to make things easier for yourself as need be. As I say “It is what it is, and I can’t stop it just yet, but I’m working at it”. As George Custer said “What’s wrong here? I have them surrounded and they don’t even know it”?

[David Bennett]

Great idea to use a cabinet for protector on the flat buttons!

[george-poulsen]

-Those cabinet door stick-em felt spots have changed my whole attitude about the compressors and can help your finger quickly find the button even in the dark and turn on and off much, much more easily. Don’t know why Inogen wouldn’t put them on the machines as the last step for the user.

-I also use the 1/2″ x 4-5″ velcro brightly colored inexpensive strip ties from Lowes to loosely hold my canula tubing to the extendable handle on my small 2 wheeled Inogen dolly for my G5 (or G4 too). Keeps the tubing from wandering all over the place, and kind of keeps it close to the machine when not extended.

One velcro about midway up extendable handle and then 2 on top handle to keep the tubing up there and a third on top handle to tuck my nose piece under the tab when not in use.

-A side issue for any readers for those pesky nose bleeds from oxygen dry-out. My ENT yeterday told me to get some of the no-drip saline spray named AYR. She said it will help stop the occasional bleeds and not run out. Bought it and is a bit thicker than the straight liquid salt sprays for toughening nasal membranes.

-Last item is I have trouble walking even with oxygen more than about 100′ before really out of air and breathing really really hard. So bought a neat little electric scooter and a wire basket made for the rear plug-in tube behind seat. Now when I go to get the paper or mail or whatever outside I have some nice mobility. I simply use walker (with G5 oxygen on seat) to get to garage, then lift two wheeled dolly with G5 Inogen unit off walker seat and set it down in the back basket on back of scooter and use garage door opener to get “out” and go get newspaper (using my also handy 3′ squeeze picker-upper to get the paper and put it in front basket. It works and wife feels she has gotten a little of me back for utility :-). Can’t recommend the scooters enough although seemingly an extravagance. I can even run it out into the yard although its not a terrain type thing they can be bought in stronger bigger versions. Even started taking my dog for walks down the street the other day, she likes the zip leash and faster speed than my otherwise shuffling along.

[Terri]

I use the Ayr Saline Nasal Mist several times a day to prevent nosebleeds. It works pretty well for me and keeps my nasal passages clear.

[Steve Dragoo]

After 7 years with IPF and at 74.5 I am medically on my own in the Philippines. Suffered a very serious acute exacerbation and as I slowly – slowly – recovered I started looking at many different supplements. Some help some don’t but each of us is different and may have a different type of PF. So the only consistent thing in my life is our spiritual walk because all else fails.