Are you honest with your doctor about oxygen usage?

[Ann Goddeyne]

I too am supposed to use oxygen with exertion. My levels drop quickly when I don’t use it. BUT I still “run” to the grocery store for a few things or go out with friends without my oxygen. I keep telling myself that I am the only one who would be bothered by my oxygen use. That it’s just my ego telling me I’m ok without my oxygen and that I’m somehow too (pick a word—important, normal looking, whatever) to use oxygen all the times I should be using it. I need to get over myself.

[Brittany Foster]

Hi Ann,
I can relate. I know deep inside that I am the only one that will care about using oxygen. The people who I am surrounding myself with would want to see my healthy (as possible) and know that I need oxygen and have this condition. It wouldn’t be a shock to anyone. I guess I am still very self conscious about my appearance with it on and just wish to go back to the days where I had more confidence in myself without it (even though I still struggle with self image). I too need to “get over myself!”

[Nathan Young]

When I first fell ill I was visiting my wife’s family in Puerto Rico where she grew up. At that time we were not married yet. That for me was not a fun trip as I spent most of my time in 3 different ER Rooms with outdated equipment and the language barrier issue as all the doctors were speaking to my wife in Spanish even though in Puerto Rico everyone is taught how to speak english in their schools. When I had a little strength I took the first flight to Kansas City where I grew up where I was diagnosed with PH as no one knew what was going on with my body in Puerto Rico they just wanted to toss me into ICU in hopes that I would get better. I honestly believe that had I chose not to go back home to Kansas City I wouldn’t be sitting here writing this post today. When I landed in Kansas City my wife took me straight from the airport to the emergency room where I was admitted with extreme organ failure and the director of cardiology told my wife had waited another 3 to 4 days to come in I wouldn’t be here today.

To make a long story short I am no stranger to PH and I for one know the importance of using my oxygen but yet to this day I can’t bring myself to wear it out in public. I don’t have a tank as I have a stationary concentrator and a portable concentrator so there should be no reason not to use it. I use it as needed during the day but I do sleep with it every night. Like Brittany I am self conscience as on the rare occasions that I do wear it out in public I feel like everyone and their mothers are staring at me to the point that it makes my skin crawl. I honestly believe that if I were to be given the choice to wear my oxygen in public or catch a venomous snake with my bare hands I know myself enough to know that I would choose to catch the snake.

I’m also am fairly active. No I don’t do a lot of exercising like I should but what I mean by active is that I like going to the bar or club to have a drink or two, I love going out to eat, fishing, and shopping with the wife. I recently moved from Kansas City to St. Augustine, FL which is the oldest city in the country and their is always something to do in this town. We have tourists all year round as the tourism never seems to slow down. I don’t know if they come for the romantic charm that downtown St. Augustine has to offer or if everyone comes here to drink from the Fountain of Youth that Ponce De Leon claims to have found. Yes! St. Augustine is home to the Fountain of Youth which many believe offers every lasting youth to those that dare to drink from it. Frankly, I took my aunt there when she came to visit and while they chose to drink from it as I don’t want to die any sooner than I have too. I say that because I think that the fountain should be called The Fountain of Death! The water that comes from the fountain not only looks horrible because of its yellow mustard color but it smells even worse as it has a strong amonia and sulfur smell. So if anyone ever gets to St. Augustine the city is very pretty just drink from the fountain at your own risk lol.

I’ve only been in Florida for a year and I still haven’t done everything that their is to do in town. Disney World is only a few hours south so there is also stuff to do all around Florida and I like to explore so I’m always doing something so in that aspect I’m active and I hate to wear my oxygen while doing it even though I should. I guess for me I feel like I’m tethered to a rope when I wear it as I’m only able to do things as far as my oxygen tubing will allow. Life is short and I refuse to be tied to my tubing which will dictate what I will do and how I will do it as even though I have a portable concentrator it still gets extremely heavy after awhile making it harder to move around as it tires me out faster than it would without it. I think that is the biggest reason why I don’t use it in public.

[Brittany Foster]

Hi Nathan,
Thanks so much for the honest response. I feel like I honestly understand everything that you are saying about oxygen use in public. For me, it’s sad but true , that the only time I feel comfortable wearing it is in my home when I’m just around a few people, or in the hospital. Because nobody stops to look at me twice if I’m wearing it in the hospital or doctor appointments, I’m just expected to “be sick”. When I go out with it, people assume the worst and I receive a lot of pity glances. I don’t feel like me when I have it on and don’t get treated like myself.

I’m going away this weekend and have gone away on trips with it. I definitely do wear it when it comes to walking any distance with it. But as soon as I sit down or have drinks with friends, it comes right off! I would definitely get treated differently at a bar if I was wearing it. And it just gets in the way of my dancing and I want to do it while I can without being held back by a cord (although if I dont wear my oxygen I take frequent breaks and do try to listen to my warning signs telling me to rest) . I always keep it on me “just in case”.

I can relate to just wanting to be able to do things without feeling like you’re literally attached to something and can only go so far. Its limiting and makes me feel limited which is a bad feeling to sit with.

[Robin Taylor]

Yes. I cannot not be. I was diagnosed with PAH last summer and left the hospital on 4L. I need it 24/7. I’m fairly active…I grocery shop, garden, do housework, make meals, take care of two large dogs and three cats, volunteer 20 hours a week for my local shelter and have been doing Pulmonary Rehab for about two months…all while dragging my C-tank on my back or carrying it (I have a concentrator for Home with a 40 foot tube). I now am on 5LContinuous or 5LPulse.

I guess the way I look at it is, (being on O2) it’s better than the alternative. I’ve gotten over the “oh, everyone is going to look at me” stage, frankly I don’t give a d**m. I feel better on oxygen and I’m going to do everything I can to live my best life…whatever that is. See my cannula and pity me if you want, but I’ve got better things to do.

[Brittany Foster]

Hi Robin
Thanks so much for the response. I am also on 4 liters with exercise. I do wear it with any kind of walking around for any distance like to shop and stuff. Just when I’m out and dressed nice with friends I keep mine in the car in case. I too try to focus on the positives that oxygen therapy brings and the fact that I feel better should be motivation enough to wear it ! For me, sometimes my oxygen levels still don’t improve because of my heart condition I have too. So during those times oxygen is more of a comfort than actually helping improve my sats. I guess it just depends on the day ! I love your attitude though and hope to not give a d**n one day too! Thanks for your honesty !

[Rosemary Martin]

I appreciate hearing from all of you on this issue. Here is the truth i gave myself pulmonary hypertension by not using oxygen the past years when i was supposed to. I slept with it but as for going out, etc..negative.. Now i have a concentrator at home, at my office, and my summer place. I use the portable for getting around…but even on 4 it doesn’t help all that much…i finished rehab last week where i improved 6 minute walk, treadmill, etc..but using 6 liters. I took a car trip this weekend my feet are swollen and walking on concentrator on 5 i am still huffing and puffing..

[Brittany Foster]

Hi Rosemary,
Thank you for sharing that with us. I’m glad that you have improved on the walk test with the help of pulmonary rehab, even if that means putting your oxygen up to 6. I can tell you that I feel the effects on my body when I dont wear it. I am aware of the warning signs that alert me my oxygen is “too low” for me which would be anything below 85 in my case. I am almost forced to put it on by my body. It knows what we need if we are willing to pay attention!

[Jolaine Cowherd]

I would rephrase this question: Am I honest with myself about oxygen usage or am I in denial? The honest answer is denial. Who am I kidding? No one, and I’m hurting myself. My last echo (April 2018) showed a markedly enlarged right atrium from my previous echo (September 2017). I am definitely well on my way downhill to my January 2017 echo. My legs are swelling again. My feet are ugly. You all get the picture. The last few weeks I have been trying to figure out what I did differently. I improved, and then I went backwards. Of course, we know that happens in time with PH but this just didn’t make sense now. Then I realized what the problem was. I was so gung-ho, super-duper keen for an improved September 2017 echo I spent a large part of the day on oxygen. (I always use oxygen at night.) Then I slacked off, went into denial mode, my mind telling me that it’s OK, you don’t need to use the oxygen. I listened, and I knew better. We can’t trust our minds. They deceive us with this little voice telling us it’s OK. “Eat those chips, stay up a little late, don’t rest now you’re not that tired….” We listen. The mind needs to be kept on a short leash. I marvel how blatantly I fell for it, never stopping to think what it really meant. It took 1 echo and 6 weeks to wake up. I am so grateful I did. What do I use for oxygen? I have an Invacare portable concentrator, the larger model for nights, and also the Invacare homefill system that fills my bottles. I use the Invacare portable concentrator when I travel (great in the car, on the bus, etc.) At home I use the homefill bottles. I put the ones that are about 14″ tall into a small backpack that has a water bladder holder. The bottles fit as if the packs are made for them. This makes carrying the oxygen easy and light. I have no excuse to complain. I can bend over, I can garden, I can milk goats, I can even handle unruly goats while on oxygen. The bottle stays secure in its pack on my back. Comfy. So, my advice to my mind is “Shut up! I’m not listening to you. I need oxygen.”

Realistically? If I cannot improve to what I was, at least I do not have to do the same as push myself over the edge and turn a snowball into an avalanche as my health deteriorates faster.

I’m going back out now to milk the goats and if you’re wondering, you’re right. I’m heading out with the good stuff (oxygen). I am making a commitment today (May 23) to our group. I am going to use daytime oxygen like I should. I will have another echo in 6 to 9 months. I plan on my next one being better. If not better, at least stable. That’s only possible if I commit to oxygen. Will commit and promise to let you know. Oxygen-junkie. Bubbles

[Brittany Foster]

Hi Jolaine,
you’re so right ! It is more about being honest with ourselves and what we are doing to our bodies by not wearing it. I feel as though sometimes having really bad symptoms could have been prevented if I just sucked it up and wore my oxygen as I was supposed to. I am a lot better at wearing it when I am doing things that I once thought of as “simple” like grocery shopping or running into the mall to pick something up quick. With me, no outing is ever truly “simple” anymore and I’m sure many would be able to relate to that. I think it is good that you are wanting to challenge yourself and hold yourself accountable. We are all with you and all support you and should be supporting each other in wearing it and being honest with ourselves in order to help us live the best we can. I hope by doing that you are able to see some improvements and feel a little better over all! I know for me, feeling a little better can make a huge difference in my mood and energy.

[Dori Herrick]

Being someone with late-stage PH from diagnosis, if I don’t use my oxygen, I will faint. So, I haven’t had a choice in the matter, and my attitude is a lot like Robin Taylor (above): no time to worry about what people think of it.
Years ago, as someone who went from very active to crippled by Arthritis, I learned the hard way that I look much sillier lying on the ground than using a cane or walker. Same goes for oxygen. When you go without, you are pushing your heart to work harder. When you overtax the heart, there comes a point when your heart reaches the limit of what it can handle; the immediate response is desaturation (loss of oxygen to the body) followed immediately by syncope (fainting). Fainting in public is much more embarrassing than wearing a cannula could ever be, and puts you a risk for injury.
Also, the more often you go without needed oxygen and stress that heart, the more irreversible damage you are doing, which will progress your disease faster. The point is, if you wear the cannula, you will probably live and be able to enjoy life much longer.

[Brittany Foster]

Hi Dori,
i really appreciate your comment. Thank you for putting things into perspective for me. As someone who also used to have a lot of fainting spells, I know firsthand that wearing oxygen sure beats feeling like I am going to pass out. There are some days when I am feeling “well” and it is almost as if my mind tricks me into thinking that I don’t need it. I always need to remind myself that I am probably feeling well because of the oxygen in the first place and it isn’t a sign that I don’t need it. It certainly is saving my heart from having to work too hard!