Post by skate4life on Feb 25, 2015 11:08:08 GMT -5
Sadly, no one educated me when I first went on oxygen. I was so scared and quickly frustrated. Yes, there are different set-ups (liquid and electric concentrators) but some things are common to all so I will start this topic with a just a couple of things I learned. I hope others will chime in as the months go by - no rush here... ALWAYS CHECK WITH YOUR DOCTOR ABOUT ANY SUGGESTIONS HERE WHEN POSSIBLE.
Wearing the nasal cannula at night was a struggle - it was weeks before I adjusted. For me, I found I got less tangled by putting the tubing and slider over top of ears and snug it behind my head, then looping it over my shoulder to the front of my chest. As I sleep with a t-shirt or jammies, I used a large safety pin I the front to pinch the fabric making a tunnel for the tubing to slide through.
Taking a shower - put the tubing over the shower curtain rod or shower door. If the curtain rod is too high and hard on your arms, use 2 clothes pins to secure it to the shower curtain. There is nothing more scary then washing your hair and the soap causes the tubing to slip off your earlobes and fall to the tub floor. Using the clothes pins (even if you put it over the rod) initially, will always keep the tubing within reach to lift the cannula back up for your nose....sort of like fishing:)
Showers can be quite a bit of exertion. The anxiety of learning to deal with a cannula can add to your shortness of breath. Be sure to set up your bathroom ahead of time. Bring in with you your oximeter and a phone (should you need to call for help) eyeglasses if you need them to read your oximeter Don't worry about water blocking your cannula - the flow pressure keeps it clear.
Learning to navigate your house with 50 ft of tubing can also be a challenge. Some have put suction cup holders along the hallways to keep the tubing off the floor. I hope those with pets will chime in here on how they handle the animals playing with the tubing !?
Post by skate4life on Feb 25, 2015 18:45:44 GMT -5
John - I don't use a humidifier. Doc didn't order it. I do know the RT nixed the idea for my BiPap because I don't use it long enough (less than an hour each time). I can't use tap water so it meant getting special bottles of saline and all the work of keeping it clean and free of bacteria and mildew.
Post by skate4life on Feb 25, 2015 20:59:41 GMT -5
John, the oxygen is drying and some people have a really hard time with it. There are gels you can use to put in your nose. I bet your provider would give you some to try. Do NOT put anything petroleum based in your nose (has mineral oil as an ingredient) as it will burn the tissue with the oxygen. Low flow O2 people don't seem to have a problem as much as higher flow (3+ flows.)
David reminded me that there are all sorts of ways to carry your oxygen when you leave the house. Some use a backpack. This can be especially helpful to those who find the traditional shoulder bag too heavy or stressful on their shoulder. I personally prefer the shoulder bag so I can easily take it off and set it on its side into a slightly curved wire basket (kitchen cupboard section of Lowe's, take your seat measurement!) that sits on the passenger seat of my car. I keep the knob exposed so I can easily turn the flow down while driving to conserve the oxygen flow and then turn it back up when I exit the car as that is more stressful for me. Others use special portable carts for either single or double tanks. The hard part is securing the tanks while in the car so any abrupt stopping (or accident) does not turn the tank into a projectile missile. Bungie cords and crates seem popular. I 'think' LOX people have to keep their canisters upright at all times.....anyone know the answer???
I also learned to keep 2 spare tanks and a spare cannula and tubing in the car as well. Strange things have happened to tubing..... For some kind of tanks, having an extra adjustable wrench & o-ring/gasket is advised in case the toggle lever breaks off in opening/closing the tank.
Lastly, ALWAYS make sure that any spare tank is full!! Nothing more distressing then to need it and find it empty!
Post by skate4life on Feb 26, 2015 12:00:56 GMT -5
Glad to hear it John!
While I started this thread talking about cylinders, there are also some pearls for POCs (portable oxygen concentrators.) Finding the right one for you can be a lot of trial and error. One of the biggest misunderstanding is the 'number' setting on the POC. Many people think this is the amount of oxygen (liters per minute) that the machine is providing. NOT TRUE. And a '6' on one company's machine is not the same as a '6' on another company's machine.
POC - make sure you understand how long the battery will last at different settings. Ask your provider about the cannula they provided. POCs in 'pulse mode' means you breathe through your nose and the inhalation triggers the machine to give you a bolus of oxygen. Some cannulas have only one side for inhalation triggering and this can be a problem if you are prone to a stuffy nose (allergies or other partial obstruction.) Also, most require a cannula that has an enlarged section of tubing at the base of the prongs...ordering one without this 'trapped' area might not work on your POC. Again, check with your provider. These do limit tubing to 25 ft.
1: get a copy of the owner's manual (even if you have to go to the manufacturer's site) and familiarize yourself with the Alarms and what they mean and the Troubleshooting section. If you can, print these 2 sections and keep them in a handy place. When an alarm goes off at 3 am your anxiety level will shoot up and you might find yourself getting more SOB as a result. 2. Use pipe cleaners to clean inside the nasal prongs. If you are using a lot of saline nasal spray, the dried salt crystals can start to clog the prongs. 3. If the 50 ft hose is curling/tangle too much, invest in 2-25 ft hoses, connect them with swivel connectors and another one between your cannula and the tubing. I've not liked the ones my provider gave me so ordered Salter online (a real favorite and they spin great to keep tubing straight.)
Post by skate4life on Feb 27, 2015 10:51:40 GMT -5
Outdoor activities will soon be here and getting out and about with your new companion can be frustrating. Look for pre-season sales for:
Sitting stool or bench to use in your shower or bathtub (or both.) I like the ones that have thick legs with holes/buttons so you can adjust the height. I started with a small round one and would put a cloth handtowel on the seat when I had it in the shower so my fanny wouldn't slip off the seat. I also had gotten 2 rectangle ones but had a hard time finding ones to fit the curve inside my old bathtub. There will be times when the humidity/steam and warmth in the bathroom will make breathing more difficult. Being able to sit, lean forward and PLB will be a big help. I now keep the round stool near my bathroom sink for those days when I want to wash up or brush my teeth and standing is too much for me. Sadly, after one hospital admission I was so wiped that the Occupational Therapist got me a special bench with a back that 2 (adjustable) legs go inside the tube and 2 legs are on the outside. The seat spans the distance and there is a slot to tuck the shower curtain. The rectangle ones - one I used out in the yard and since it is plastic, I just left it tucked behind a bush for the season. The 2nd one I left in the basement to sit on when doing laundry or other things and needed a resting spot before climbing the stairs back up. Except for in the bathroom, if you have a handy carpenter around, making a simple bench would be real easy and give it some exterior paint. Sometimes we are just having a bad breathing day, other times we have not paced ourself enough.
Another thing to look for is a small wagon or 'lawn buddy' for yard work. Look for one that would have a sturdy handle to hold the strap of your O2 and preferable with a seat you can sit on as well. There are all sorts of configurations so check around the home centers and hardware stores. Some have compartments plus a seat. But as the heat of summer ramps up, try not to have your POC in the high heat. Most require the battery to return to indoor temperature (which can take over an hour!) before it will start to recharge.
Look for backpacks if you think you might like to use one - schools will be ending so these should be end of season items too.
With seasonal clothing change over look for a lightweight terry bathrobe (unisex or ladies can look in Mens section as they are usually longer and have bigger sleeves, easier to get into.) While thick ones are tempting, they are heavy and with water (after bathing or moving from washer to dryer)are really heavy and can be tough on our arms and chest muscles that we need to breathe. Check out sales on flannel button down shirts and fleece lightweight zip up jackets to wear around the house in winter.
Wearing oxygen outside in public is NOT a big deal anymore. We just never notice other people before. I didn't want to either and claimed I never saw anyone wearing oxygen:) Wrong....and getting breathless drew a lot more attention from the public than carrying my 2nd 'purse.' Children may question you and simple answer will suffice. Adults can be a little more difficult to deal with....you have options how to handle this. Think back to the days when wearing eyeglasses and braces on teeth, to the wearing of turbans to cover a bald head from chemo drew attention...... So check your attitude at the door and venture out
Post by skate4life on Feb 27, 2015 10:55:16 GMT -5
Sorry for the long posts.... wearing oxygen does change many small things about our daily life and it can be very frustrating! I hope some of these thoughts will help make your life a little easier.
Please, those of you that have been on oxygen awhile, share your thoughts and hints so others who now find themselves using oxygen can benefit from your experience. That is what this Forum is al about - helping, caring and encouraging each other. Thanks.
Post by chrocary / Jane on Feb 27, 2015 11:44:13 GMT -5
I am not on oxygen (as yet) but I had no idea. Thanks Skate for suggesting this as it gives me some idea of what I may be in for in the future. As you said the whole thing is kind of scary. But the knowledge prior to this step will be a great help.
I found that wearing my oxygen in public gives me a chance to talk to other people. Some people ask do I mind telling them why I am on oxygen. They thank me after we have had our talk.
Gives me a chance to tell them about my oilfield experience and how I was diagnosed with emphysema when I was 32 yr old.
I can tell them cigarette's are bad for you but you also have to be careful of your surroundings. Primary Causes: Smoking, Alpha-1-Antitrypsin Deficiency, Air Pollution, Manufacturing fumes (Occupational exposures) and having repeated pneumonia.
COPD is often not purely emphysema or bronchitis, but varying combinations of both. I don't have bronchitis or asthma. My disease is strictly emphysema.
I have learned that most people don't have a clue about the disease.
Post by skate4life on Feb 27, 2015 20:27:38 GMT -5
Chrocary - Not everyone with COPD will need oxygen at some point. Many people go 10-20 years not needing it. Everyone is different. There are people in my pulmonary maintenance class that have been attending for the exercises for 10-15 years and are not on oxygen.
Also, I think the marjority of people with COPD that get oxygen are living very active lives! They have adapted to the subtle changes, but most importantly they have come to realize that exercise is the key to feeling better both physically and emotionally. The annual improvement in POCs has allowed them to get off their butt and get out in the world.
It is sometimes hard to separate just plain good ideas for those with COPD + oxygen and those - oxygen. There is a lot of emphasis on safety, pacing yourself, PLB, taking your medications, and avoiding exacerbations. But anything that will make it easier to conserve energy is a welcome addition!
I don't want you to think that once on oxygen, you will need many of the additional items I talked about!!
I had emphysema for 30 years before I went on oxygen at night and when needed. I still don't exercise with oxygen. My oxygen level stays above 90% when I exercise. I don't exercise strenuously. It drops when I exert myself with everyday chores.
Post by skate4life on Feb 28, 2015 11:55:18 GMT -5
Great question hugs!! I just did a search on Amazon.com for 'Hand-Free Hair Dryer Stand' and there are lots of choices. It is best to read the reviews, some of them are detailed to help with the item. Anyone with shoulder or neck problems (arthritis) would benefit from these holders too.
Haven't found anyone having a problem with hairdryer + O2 but you need to make sure there is no 'short' in the hair dryer motor. I think all the common sense things apply with or without oxygen like if using hairdryer near water (bathroom sink) make sure it is plugged into a ground fault outlet, the cord is not draped anywhere there is water/moisture, and don't stand in water My slippers have a rubber sole...
David; I'm like you I need it at night and as needed during the day when I do things that require a lot of o2 like changing big red out from winter to summer and back ,working in the yard , . I am still learning when I need it and am glad I have it readily available. I was dxed with mostly em 10 years ago and just went on o2 at night last mo. .I do think that I had em at least 5 years before that and my pc didn't tell me. Thats why I got a new pc . thumbsupde1 . th_icon_hug
In the kitchen - use an apron and put your oxygen tubing underneath. It will keep it away from the oven door or top burners. It is always stated that you need to be 10-15 ft away from open flame. I sold my gas grill.... But most of us with gas stoves do use them. After opening the oven door (traditional oven or even wall oven) stand to the side of the door to pull out the rack to place item on it. If bending over is really difficult for you, sit on a chair or low stool.
Using an apron is a good idea that I never would have thought of. My first (very expensive oxygen supplier) told me not to go within 10' of my electric stove when it was turned on while I was wearing my O2!!! No wonder I was terrified of wearing it. This was a large company and believe it or not the person I met with is an RT. I became very creative cooking meals in the microwave. I was so afraid of the 02 being in the house that I bought a POC. By the way, I did not buy it from him but found a new O2 supplier who is much cheaper. ($130.00/mo. compared to $256.00/mo) Best part is that the new supplier lives just a few blocks from me and is great. He takes the time to visit when he comes and is more than willing to answer any questions I have. Just like respirologists you need a supplier that you are comfortable with.
Sometimes there is a difference between what the pros 'have to tell you' and what happens in real life. That is were input from COPD people actually living with it can be so helpful. Sitting to the side of the door came from the PT person when I was in the rehab facility. Yes, caution is required and no one wants anyone to go up in smoke!! Sorry to hear you were so scared that you bought your own POC but glad you found someone who you are comfortable with and answers your questions. Ask him about this hint and see what he says..... I have a gas stove and was scared in the beginning too. I am still very watchful when I first turn it on, I stand back and turn my head a little so I am not PLB extra oxygen/air in the direction of the burner. I sold the gas grill because I felt the flame was not easily controlled like if fat on the steak suddenly flared up. I rarely used it anyway, just for the occasional steak, so when the opportunity came to sell it I did.
I must have missed these tips somewhere, not surprising as tired as i am.
I found that Clarks is having a clearance. I bought a fashion backpack on clearance for 28 when it was regular 105. My A tank fits in it nicely with the flow meter out to adjust and canula. Outside pockets for easy access. I used it yesterday for a long walk and it was so much easier for me than the long back gadget they give with hard straps.
I love these tips. I had not had a problem with my Lakota when she was with me, and I do not have a problem with my pup. I am fortunate. But I do put them in rooms when I leave and close the door so she does not get a boredom thing going on and chew while I am away.
I hang my canula through the grab safety handles on the shower or if not maybe they have them for their tub.
I use my gas stove and stand back a bit but i take the canula off when lighting just in case. It is a great igniter and newer stove so it isn't off long.
You are correct, we teach each other about oxygen. Skate, like you, I also was told nothing but use it (O2) any time I was not sedentary. The oxygen people had to show me what it was was and what to avoid (for safety).