The Travails of Dealing with Supplemental Oxygen

I agree with everything, except the husband thing. I am my own pack animal. I leave the house looking like I am going on a safari. Yes, I value my two minutes. Unfortunately, if I go longer I feel it. I do sneak a little time in the early morning in bed.

Mostly, I am amazed at how much my body is responding to the oxygen. All kinds of little things are improving. My skin color is better; the texture of my skin has improved; I don't have plaque build up on my teeth; and the list goes on.

Kim's columns always ALWAYS help me. She puts into words exactly the way I'm thinking some days. Thank you Kim! Because of YOU, I know that I'm not alone!

Hi Kim,
I feel your frustration! If you live in the Northwest switch immediately to an oxygen supplying company called Norco. They are excellent!!!! They even lend out portables for traveling at no extra cost. They also have liquid or frozen oxygen and is my freedom during the day. The little Helios 3000 I belt around my waste means hands free. My oxygen needs are still low enough, I can ride my bike or take exercise classes using 4 pulse. I have not flown yet. I am afraid of all the "stuff" I'll have to take. No liquid oxygen where I want to go. It means Simply Go for night and Inogen for day.

Hi everyone, I have almost all the same concerns and problems mentioned. It is funny now that I think about it I take so much of this for granted and deal with it. ithere is very little thought about all those affects on my daily life. I guess I just deal with it because that's the way it is.

I read your story and feel so bad for you. I have been on oxygen 24/7 for over a year. I really don't mind it all. I am grateful for every day that I get to enjoy life. I have a concentrator so luckily I just fill my own portable tanks. It is an adjustment being on oxygen but I don't mind. My insurance covers the cost of my equipment so I don't have to hassle to get what I need. The portable tanks are heavy (a little over 10 lbs.) but I still go for a drive or ride my scooter in the neighborhood. I hope that you feel more positive in your journey.

I have a distilled water holder on my house oxygenation. My husband refills it about twice a week. Without this my nose dries up and bleeds. I get upset when my 50' hose catches under furniture, on kitchen cabinets; you name what it doesn't catch on. I get anxious often, but find that an .025 Xanax at bedtime a few times a week calms me down and lets me sleep! I've had IPF for 18 months. I hate being tired most of the time and not able to stand still for long mostly in the kitchen because I love(d) to cook.

This is all so true! Oxygen is my best friend and worst enemy! I hate looking different but refuse to stay home just because I wear oxygen! My husband is a great support system too. I just hate this disease and what it has done to me! But I am a fighter and a survivor!!!

I think we all just deal with it and go on. We are all grateful for every single day!:-)
But I'm sure we have all had 1 or 2 days out of 30 or more that we all can identify with Kim (& others)... it just helps to "voice it" and to not feel alone. A lot of it depends on how many LPM one is on.
Most EVERY posting from Kim is positive and encouraging!
And thank you to all who gave advice or tips on living with IPF.

Kim, I thank you for your writing. I'm not on oxygen yet but your practical comments are so helpful. Not as scared as I used to be. Australia has different criteria. Have started to read up about it. My Doctor says I'm no where near that stage yet. My O2 sats are at 87-88 but rise above 93 quickly when I consciously deep breath. Once I stop being 'aware' it goes down again. Thanks again.

You are not alone. I get soooo tired.Worrying over health insurance and stuff doesn't help.

Kim - I had quite a chuckle at your post (loved it!). I am a family member of an O2 wearer and I know she has "shared" her frustration with the walls at times. And I have tripped or stepped on her cord probably more times than I can count. But I will be her pack mule any day as long as she's able to move about the cabin freely. :)
Blessings to all patients, family members and care takers. We are in this together!

I can totally relate to all of this. Being single is the worst part, people either stay away from you or they feel sorry for you. I don't want sympathy, I want a damn set of lungs to free me from this mess. People forget you are just like them, have a need for companionship but I feel they look at you as defective. I guess I am in a way since I have PF and LCH, which is very rare in adults so my thinking is that I am a rare find. I have to stay positive in order to win this battle but every time I get sick, it takes that much longer to get back to where I was. With that being said, I always remember... I'm never giving up!!!

So glad to read all the comments. Just to know others are dealing with the same thing helps. My insurance approved a portable oxygen concentrator that is rechargeable and also has cord to charge in car. I just have small co pay. What setting you need for oxygen depends on how long it will last.

My 65 year old/young husband has just been prescribed supplemental oxygen. He's had 2 open heart surgeries in the past and also has emphysema. I'm concerned about him becoming a recluse due to the need for oxygen. He's been on disability for 6 years and I still am working 8-5.
What can I do to make this transition easier for him. Seems like another awfully large pill for us to swallow.
I found all the comments insightful. Thanks for sharing.

I feel same as you at times, but I am thankful my insurance covers it and I have a great supplier. I think the worst thing is when you go out and have to rely on the portable tanks...it is pulse where at home it is continuous. I always loved to cook but find it a chore now, I also sit to do what I can.

I too am am a 24x7 oxygen user. I complain much tripping over and getting my cord hung up, it is so fustrating.

Hello Kim, I used 24 hour oxygen for 3.5 years. Almost everything you describe I went through. My suplier was wonderful. We called and it was delivered. Sorry about yours.
I think your feelings about oxygen are very normal. Even though it is saving your life, having a tube of extremely cold wind shoved up your nose is most uncomfortable. I hope you are or are on or getting on the transplant list. For me it was the beginning of hope.
I also wanted to talk to people who were like me, or had a transplant. The only thing special about me is that I did get a double lung transplant. I was 64 and now I am near 76 and I am still going. I only tell you this to give you hope.

Very interested in learning the process of going onto oxygen - either using a portable concentrator or going to 100% O2. The "nuts and bolts" of oxygen use would be an interesting read for me. I haven't found anyone offering such a course to IPF patients.

I agree this is a horrible thing to have too deal with.

Lately I have chosen to be more out spoken, especially when having to wait at the hospital lab. The waits can sometimes up to 3 hours and I don't have enough 02 so I have to leave.

Public unawareness also upsets me. I don't think they understand what it's like to short of breath or to be running low on 02. We as human beings take it for granted until you can't breath.
I try to approach everyday being grateful for the day and try to remain positive. I love to go for short walk in nature.
What time I do have left I want to enjoy and make the best time possible.
Carroll

Good morning! I am writing for my father. He is 86 and we live in Southern California. He has pulmonary fibrosis and is on Esbriet, but is taking a small dosage (3 daily).

For some time now, he has been sick to his stomach and now does not want to eat and gets sick about an hour after he eats. He does take his Esbriet with meals.

Could any of you comment as to whether you may have had any similar symptoms, if you are on Esbriet, and/or the fact that pulmonary fibrosis is also related with lesser appetite?

Would appreciate any feedback.

P.S. Kim, it is very helpful to create this platform to share issues. I wish we lived in the NW, as we could use better support from dad's oxygen company.

Blessings to you!

Good article! My husband has the same problems except our insurance covers his oxygen therapy. It really helps to hear others having the same problems.

Hi, I have had all those problems with my O2!!! Before IPF I loved to scuba dive and I had to wear tanks to breath while diving. Now I cant dive anymore and I feel like I am scuba diving walking down the street! Unfortunately for me I got to very bad side effects from O2, one it dried my nose out so bad that a small hole through one nostril to the other and it gave me serve dry mouth to the point that my teeth started chipping and cracking. I am now on the transplant list. I relate to everyone...Much love Kels

Lucky in England UK we don't pay for oxygen .
I'm on 12 litres liquid oxygen when mobile.
Even turning over in bed I get out of breath but I'm alive.!!!
So I thank my lucky stars.

You are not alone. The worst part for me is having other parents pick up slack so my kids can still participate. Ive been blessed to have some of the best girl and boy scout leaders to help. Theyll step on and get me rides or help carry things. But still i miss the days where I could just be mom. And seriously feel for my youngest who will never know a mom that doesnt need o2.. Although on the bright side the tub8ng makes a terrific teething toy.

I have an Inogen that lasts for 5 hours and weighs 4.8 lbs. I like it so much better than those small 2 hour containers. I had a cough for 12 years before I was diagnosed and that was because one day I couldn't get out of bed. When the EMTs came, my oxygen level was 82. The day before I was fine. Some days are good and others I am just tired all day. I've had 13 fractures in my spine, 6 cemented and 7 healed by themselves (by not moving much). Thank goodness this is much better now. Glad to hear your spirits are 'up'. Just enough worry in this world without worrying about myself.

I was on Espriet for about 4-6 months. I lost 35 lbs because I just didn't want to eat. I was taking 3 at each meal. My husband was begging me to eat and I just couldn't. Finally my doctor took me off it! That was about 3 or 4 months ago. I'm doing fine without it I'm happy to say.

No, 63 is not too old. I am 76 and that was too old, but not 63! Hang in there!

Loved reading all your comments. Don't have PF, but have COPD. So I also have the oxygen 24/7. Friends take me out to eat and help carry my baggage. They're great. My main problem is my cord. It kinks, I trip and the 2 cats think its a toy. Thanks for listening.

I have been on supplemental for 5 years. Some days (usually) I thank God that I live in a time where supplemental oxygen is available. Some times (usually) I get exhausted carrying around my POC every where I go, my big dog (110 lbs) laying on the tubing at home (try getting that out from under him!), caught on the furniture, all everyone else has said. When I first was put on oxygen and had to leave my job (where my lung injury occurred), my-I thought-best friend said "Now no one will want to date you". I was in my 50's, single, and enjoyed my social life. Guess what? Even though I am very self conscious any time I meet someone new, I still do get asked out. And I have the best quality of people around me now. People who don't care that I have to lung Oliver *my oxygen with me. Sure I miss the things I loved to do, and can't now, but I won't let myself go there. I try to appreciate the things I still can do.

your not alone, i have been on oxygen 24/7 for 7yrs now its as needed, my normal range is82 to 88, if your insurence covers get a portable (inogen one)no tankes a used one cost a little under $1000.00 i have ,pe, pf, ph.
\jim mcgregor

Hi there! You are not alone. You nailed it on head. I'm tired of it all. I don't have a cat damaging my hoses. But I do ride horses. I also swim with it sometimes I don't. I'm constantly forcing my lungs to exercise. I have had PF for 5 yrs. I regret the necessary evil of having to contend with the hoses, & oh my sore nose. I keep that hose off as long as I can. I even had a Bariatric sleeve surgery lost 101pounds. It help. But my PF is induced by Rheumatoid Arthritis- Go figure right. ? Wishing us all the best and God Bless.

I have been on O2 for 5 years. One thing I hate is when you are sitting down and want to stand but you are standing on the tubing. So when you rise up, your ears and nose want to stay where they are. This happens to me a lot when I go to church and sitting in a smaller confined space. I just praise the Lord and keep on going.

Ifeel the way you do at times ! I am 79 years old,have had copd for 20 years been on oxygen for 12 years. I do have good providers & ins.

Hi Elsa,
What a wonderful care-giver you are! I am on Esbriet too and I also experience severe nausea when getting to max dose if 9/day. Sometime I get severely nauseated at 6/day. I've been hospitizrd three different times for this and it is no fun. IPF does decrease your appetite. Nausea is a side effect of Esbriet. Hope this helps a little.

Hi. I get it. Really get it. Tripping on the 25' tube? Yeah. Lots. My cat is pretty old and just doesn't care about the hose. I'm OK with that. Going out with tanks is the biggest deal for me. Actually dragging the E-tank on wheels is not all that bad. Kind of bad as I am a always clipping doorways and such.

But the worst issue for me is the feeling of exposure. Embarrassment may be the word, but using it is, well, kind of embarrassing. Longer trips by car, like to the transplant center (75mi) takes much more planning. Other than that I can drive myself around locally with little effort. Just that "exposure" thing.

Oxygen delivery? Hahahahahahaha! Answer the phone? Ha ha again. I use Apria and they have the phone tree from hell. They also have an amazing amount of complaints posted. It was a couple of months before I realized I could have the water filter, 25' hoses with swivel connectors instead of one 50' hose and so on and so forth.

Nose crusties? Globs of dried blood and goo. Cleaning the concentrator's filters? Huh. Not a routine. Maybe it should be. My wife does the heavy tank lifting on those longer trips.

I think my wife should be more tired of this deal than me. It has only been about 6 months now and I pretty much have always sat at a desk or a chair with a laptop all day anyway. With the cat of course. So I think I have it pretty easy compared to people that actually get out of their chair a bit. [Honestly, I'm not THAT bad.]

OH, age may have quite a bit to do with this. I'm 67 and have been under the knife a few times and have some health maintenance issues already. If you are use to being out and about this could make all the hassles seem a lot worse.

Gotta go. Thanks for the post. It is always nice to share experiences.

eric

Hi Roger...wow, you've been dealing with oxygen for so long. I'm so glad you have a good provider and insurance. Thanks so much for sharing with us. You're an inspiration!

Thank you! It helps to know I'm not alone with my struggles of everyday of oxygen nightmare.

Yesterday we had a power failure and I went to the library! A safe place for mind and Body! Thanks

I use two poc's. I worry about continuity. Recently we went to the mountains and poc supplied by my oxygen supplier shut down. I switched to my own. The supplier came out and cleaned the filter and the battery contacts. At that time, my unit shut down and he cleaned mine too.
I use the car charger when driving. I am going to the beach in June and plan to buy a floor model.

My wife has ALS and I need to stay "healthy"

Dear all,
It’s my 46th birthday today and, unfortunately, I’ve been suffering from IPF since 2000. I’m from Thessaloniki, Greece, mother of a 14-year-old boy. In the last 3 years I completely rely on liquid oxygen. Furthermore, because of the daily cortizon intake, I suffer from osteoporosis, having 3 vertebrae and some ribs broken. Since I didn’t want to miss anything from my son’s school, sport and other outdoor activities in general, I tried to find a way to carry my portable device. I couldn’t carry it on the shoulder or as a backpack, so I had a special trolley made, where I place the device and move it wherever I go. It is made of aluminium so that it’s lighter than an ordinary trolley-suitcase. Could I ask you something? What kind of device do you use that serves you with 12lpm? Mine is for up to 6lpm…. I’m in pain right now, I’ll have to go. I’ll try to comment again soon.

Hi I'm from the UK and luckily we do have the NHS so don't pay for oxygen etc.
Still, being on oxygen is a pain as we all know.
I'm on 12 litres liquid oxygen when mobile and low when sitting and of a night.
Fed up of well meaning people saying do you know your machine is smoking!
Ugh! I am always polite and say yes it's ok it's just a cold mist from the liquid oxygen .
One of these days will get it printed on the back of a tee shirt to wear!!
Then you get people who presume they know it all and say I know what you've got it's COPD my Aunt ,uncle etc had it and they used oxygen bet you were a heavy smoker!!!
Grrrrr!
Yes admittedly I had never heard of IPF till I was told that's what I had but I keep my patience and briefly describe the disease so spreading the word and think well another person who won't state that again and may in future spread the word too!!
What I do love is children though who stare and ask parents what's wrong with that lady?
Parents usually try to shut them up but I say excuse me it's ok to wonder and that I'm on oxygen which helps me to breathe better.
Children only need to know the basic and usually are quite happy then.
Wasn't we all curious?
Aren't we still curious?

I'm trying to find a portable concentrater that I can take on a cruise with me and not have to pay a fortune for me to rent. Most are $35.00 a day and that adds up.

Wow....I am so happy to find you. My husband was diagnosed with PF and COPD in March. He is on oxygen 24/7. We never imagined, talk about life changing. We have issues like many of you with the cord, but are so thankful for the technology. We have so much to learn. I have learned so much from all of you. Blessings to each of you.

My husband has IPF. He started having issues last year and since diagnosis he has had lung cancer surgery,collapse of the same lung and two months after that a heart attack and open heart surgery. We are thankful for everyday but often feel the struggle. The IPF is advanced and we often wonder why it wasn't diagnosed earlier when his health would have allowed for a lung transplant. We are still dealing with a learning curve as far as activity, flow rate. He recently moved from 5 to 51/5 liter. We had to get a larger concentrator. Thank you for your newsletters and others that share their tips and experience.

It was such a relief and pleasure to find this newsletter and particularly this article. I am fairly newly diagnosed, although have had supplementary oxygen for almost 11 months now. First I had a fairly long wait to get my initial test results, some of it due to my GP being on vacation and then retiring. Finally after 3 months I got the diagnosis of pulmonary hypertension. After my breathing test at the hospital I was put on oxygen 24/7 as my SAT was at 73. I didn't know and didn't any realization at the time that I was so short of oxygen. So anyway, I went home sporting my "new look", Hubby was shocked when I appeared from the pulmonary test department carrying a portable oxygen tank on my walker. More time passed and I got to see a specialist in Ottawa, and at my last visit got my diagnosis of pulmonary fibrosis, caused by almost a year long episode of pneumonia/bronchitis. So I am not really surprised. I am really glad to see all the moans and complaints about the 50 ft tubing around the house. I thought it was just me being a grumpy old woman....LOL!
Fortunately in Ontario, Canada we do not have to pay for our supplementary oxygen or equipment. Well, we are allowed a concentrator for daily use with 50 ft hose and as many nasal prongs as needed to change when necessary. Also I have a large tank of liquid oxygen in the laundry room which is where hubby fills my portable tanks which last about 3 hours. I also have one compressed oxygen tank which just sits there for emergency use. One good thing about the LOX storage tank is that if the power supply is cut so my concentrator cannot work, I can remove my hose and put it on to a port on the LOX tank and use the LOX for the time until the power comes back. So I am very thankful for all of this. Our delivery man comes every Friday between 11 and 3 p.m. and never fails, and he fills up the LOX tank each week after we have used some for outings, etc. I have also been able to borrow from my supplier a Simply Go portable with batteries and car plug for our trips to Ottawa (an hour each way, plus time at hospital). The technician at the oxygen supply company is great, she comes to the house to test me, and fills all the forms for the government etc. I can call or go in and see her at any time, no appointment necessary. The local depot is only about 10 minutes from home. I am very thankful for this.
I must have my moan though and say I absolutely HATE the tubing. The plastic coils upon itself and makes pretty pattern around the floor but always has a big knot of coils at various places, ready to trip me up, or get caught around my walker wheels. Several times it has become detached from the supply and I have felt faint and dizzy. After one or two episodes of this I have come up with a way of connecting the main tube to my nasal tube, and where it joins I have a looped elastic band on one section, and one on the other side, and then a small piece of elastic hand to tie these two loops together. It gives me protection because if it becomes disconnected, I can find the other end without having to walk half way through the house looking for where it had fallen off.(gasping...).
If I can have another gripe it would be the most important one for me, and that I really wish I had a control within reach to change the flow of the concentrator. I am going to do some checking on line and see if such a thing exists. Right now, if I am on 3 or 4 lpm resting, and I walk throughout the apartment, it could be something like 50 ft. at the end of which I am really gasping and have a hard time recovering. If only I could then turn up the flow to say 6 for 5 minutes or so, and help the oxygen a bit, until I get back up in the 90's. A concentrator controlled by my iPhone would be great, but even some kind of gadget that is manual would be great.
I am now resigned to spend the rest of my life using oxygen, so I had better get used to it, as at almost 84. years old, I guess it won't likely be an extremely long time.
Thanks for all above giving their views and points of interest. I shall be back to check new messages. Cheers all and happy breathing!

For Nikki, I wake up with dry mouth sometimes through the night and a visiting nurse suggested purchasing Biotine (drug store, Walmart). You just swish it in your mouth for about one minute and spit it out. It lubricates my mouth enough that I go right back to sleep.

For dry mouth I use Act (Walmart, Shopko). To save my nose and ears from pain from a sudden tubing stop, I use a clip (one that would hold 10 or more sheets of paper together) and attach the clip and the tubing to my shirt, leaving some slack in the tubing between the clip and my nose and ears... Doesn't prevent the stoppage, but does reduce the pain...I'm 80 and have been on oxygen for 3 years.. normally on 4lpm when on my feet and 2lpm when I'm seated... At rehab today after being down to 82 on the treadmill at a slow walking pace, the therapist said I should talk to my doctor about increasing my lpm to 5 or 6.. I like my portable concentrator, but it doesn't function well at 4, never tried it at 5.. Home concentrator will handle 5 and I sit a lot at home... My wife and I have enjoyed a lot of plane travel and cruises the past 18 years of retirement and I'm not looking forward to not being able to fly...Long car trips have been fine with the portable.. but if I have to go to tanks, I'd have to really load the car... As to those people who avoid being seen in public.. you have to just get over it... Your friends will understand and don't worry about what strangers may think. We've enjoyed a great social life and continue to do so.. stay positive. By the way, my problem is COPD and it is self inflicted.. No one to blame but myself.. I quit smoking over 20 years ago, but the damage was already done... I'm very thankful for my wonderful wife, who now has to not only take care of the yard and the flowers, but also the snow in the winter... I did take over the cooking about 16 years ago, since I wasn't much help other than that... Remember there is still a lot fun to have in your life.

Hi Kim ,you nailed it on the head. I have interstitial lung disease,and have been on oxygen 7years,just had my first plane ride,worried all the time about my oxygen. What I do is I make a new purse and a matching bag for my inogen ,try to have some color of my outfit in it
And I go out color coordinated if I have to go out with the canula and tank, I want to feel pretty !!! I'm 74 and still a bit vane. You don't have to be a great seamstress.

I am very new to oxygen (3weeks) I have pulmonary fibrosis. I would like to receive your news letters. I have found it very helpful reading all the information.

Do any of you forget to turn your portable concentrator on as you leave the house? I have done this several times, been gone 3 hours and discover what I have done when I get home and am ready to recharge. Some times the canala comes off in the night. I do not know how long it’s been off. I checked my oxygen level after I was off for three hours. My level was 75. How much damage does that do to the brain. This really scares me. My requirements for oxygen went from 2 liters to 6 in June. If I am going to watch tv or go to bed I put my concentrator on 3 but if I am up walking around at all I need to have it on 6. I try to do as much as possible so I am not adding to my husband’s load. We are 75. I was walking on our tread mill but when I went to 6 liters it just seemed like I would be so tired that I would not be able to do the chores around the house. What is your experience? should I exercise for a while and see if I can build up my strength. There are times when I suddenly get very wobbly. These are my main concerns. My life is good. I am not in pain. I pull my small concentrator on a little luggage cart I got at Walmart for $30. I can not carry the concentrator because rotator cuff problems, my shoulders need surgery. Then my oxygen needs would increase. My purse is attached to the handle along with the concentrator hose to keep it from dragging on the ground. I lift my creation into the shopping cart leaving my hands free to shop. If shopping is going to take more time than I have energy I can still put it in the basket of the electric cart. I enjoy people so we have up to twelve in for cards. Everyone brings a dish if we decide to do pot luck.
This is a great way to exchange hints and to get rid of frustration. Thanks

Hi Kim:

Such a great article. My Mom is 96 and currently on continuous flow 3 24/7. She wants a portable oxygen concentrator and I would love her to have one because we still go out several times a week and it's hard hauling all the tanks, etc. As much as I want her to get one, she has stage 4 kidney disease, pulmonary fibrosis, congestive heart failure and COPD. I don't think she is going to live long enough for it to make a difference in her life. She already has a hard time walking and gets tired easily. Someone told her the Inogen G5 is continuous flow. I looked at their website but they don't come right out and say continuous flow and if it does, would it go beyond level 3 because that's what will happen in months to come. I don't think Medicare will pay for it because we already use an oxygen provider and he says they won't. Inogen infers that insurance will cover it, but I haven't found out all the particulars. I don't think it will in her case. I am hesitating talking to them because they are high pressure salesmen. Anyway, I'm so confused and don't want my Mom to get ripped off with something she may only be able to use for a few months. The doctor told me her condition will deteriorate but he can't say how fast or slow. I just don't know what to do. My Mom thinks she will live forever, but sadly I see her having more and more trouble getting around and even breathing. Any thoughts would be great appreciated. Thanks.

Hi. I as on oxygen only at night at this point, 3 liters, however I hardly ever use it. I'm not sure why I don't use it except maybe I am in denial that I need it. My oxygen, according to my dr.,drops to 80 when I am sleeping. I also know the smoking has to stop, however can't seem to be able to do that either. How do I make myself do the right things for my overall health.