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Post by peg on Jun 16, 2019 9:20:11 GMT -5
 everyone, it has been awhile i have been on here.. I have finally gone to a respiratory rehab health centre for a 6 week program for my lungs. It was amazing and i learned alot and it has helped strenghten me, etc. I have to keep up with my daily excercises which help. Anyways, i have a quick question and would like to see what everyone thinks. I have been on continuous flow oxygen for 4 years. I have tried the pulse flow, but it is very hard to walk or talk as my oxygen goes down to fast. Any one on here ever have to be told to use the pulse to conserve oxygen, because your using to much, and there are cut backs with the health system. I find my body can't tolerate the pulse. I went to the Centre to get better, and stronger, and this pulse is making me worse. Anyone have the same problem, i would gladly like to hear. Thank you. Oh ya, i am on .5 litres to sit and sleep, and 2 litres to exert, the centre put me at that, and i am good. |
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Post by peg on Jun 16, 2019 9:22:03 GMT -5
By the way, it is the Oxygen Supplier trying to cut back, not the Health Centre.
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Post by skate4life on Jun 16, 2019 11:24:40 GMT -5
Peg, exactly what kind of unit are you using for your oxygen? There are so many kinds that deliver different amounts of oxygen with each breath. You said you run 'it' on continuous so it is a compressed gas cylinder, a cylinder that you self fill from your stationary concentrator, or are you using a POC (portable oxygen concentrator) that looks like a ladies handbag/purse and runs on batteries or plug in.? if it is a POC, give us the manufacturer name/model.
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Post by peg on Jun 16, 2019 14:25:59 GMT -5
Sorry i didn't mention, it is the "d" size oxygen tank, not liquid, you put on a cart to go, and no, it is not to put on a concentrator to fill up, the oxygen company delivers to me in tanks once a month, and i live 2 hours away. They don't leave me enough, i go through at least 1 tank a day, especially at camp with no hydro, or just out and about. Seeing i am out and about so much, they put me on the regulator with pulse/continuous, cause they said i was going through to much oxygen. I use my concentrator when i sit at .5 litres and when i sleep, and i put it at 2 litres to
shower, do house work, etc, the rest of the time i use the oxygen tanks to walk around at 2 litres, out side , which is perfect for me. There excuse is it cost them extra, to send me more tanks during the month, and they can only leave me so many tanks. But in the city where they are they deliver 2 times a month. Not far for me. So, is it normal for a person to switch from full continous to pulse. I find my body cannot tolerate it, i can't walk from the bathroom to the livingroom on 5litres per minute on pulse and my oxygen drops, and this change is stressing me and my body out. I need opinions, please.
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Post by peg on Jun 16, 2019 14:27:58 GMT -5
Sorry i didn't mention, it is the "d" size oxygen tank, not liquid, you put on a cart to go, and no, it is not to put on a concentrator to fill up, the oxygen company delivers to me in tanks once a month, and i live 2 hours away. They don't leave me enough, i go through at least 1 tank a day, especially at camp with no hydro, or just out and about. Seeing i am out and about so much, they put me on the regulator with pulse/continuous, cause they said i was going through to much oxygen. I use my concentrator when i sit at .5 litres and when i sleep, and i put it at 2 litres to shower, do house work, etc, the rest of the time i use the oxygen tanks to walk around at 2 litres, out side , which is perfect for me. There excuse is it cost them extra, to send me more tanks during the month, and they can only leave me so many tanks. But in the city where they are they deliver 2 times a month. Not fair for me. So, is it normal for a person to switch from full continous to pulse. I find my body cannot tolerate it, i can't walk from the bathroom to the living room on 5 litres per minute on pulse and my oxygen drops, and this change is stressing me and my body out. I need opinions, please. |
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Post by travis on Jun 17, 2019 10:24:04 GMT -5
Peg,
Where are you located?
Travis
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Post by peg on Jun 17, 2019 12:33:15 GMT -5
Hi Travis, i am in ontario
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Post by peg on Jun 17, 2019 12:39:04 GMT -5
As of this am, the boss of the oxygen business, has told me that i have to stay on my concentrator as much as posible and make due with my 5 -Size "e" tanks and 3 Size "d" tanks of oxygen, until they deliver on the 28th of this month. After that i will get only 15 Size E tanks for the month. Wow, now i have to sit at home, can't go camping all this summer and stay , cause we have no hydro for my concentrator. And i told them all that. And i can't tolorate the pulse flow, that i need to stay on continuous flow. What can i do now?
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Post by travis on Jun 17, 2019 20:51:13 GMT -5
I do not know about Canada, but does your doctor not have the final say on your health?
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Post by peg on Jun 17, 2019 21:06:46 GMT -5
Hi Travis, thank you for answering me. Well i am hoping your right. I just got off the phone with my doctor and he is going to call the oxygen supplier tomorrow, and i hope that works. If not i don't know what next to do.. I will let you know how it goes. Thank you.
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Post by peg on Jun 18, 2019 9:29:04 GMT -5
Good Morning Travis, and all. Well i hope to find out soon today if i will receive the month oxygen i need without fighting with the company. I just wanted to know if anyone else has had to go through this situation, as far as you can't tolerate the pulse regulator for your oxygen cylinders, and only use the continuous flow. Thanks for your ears. Look forward to some insight to help.
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Post by barb7330 on Jun 18, 2019 12:53:49 GMT -5
Hi Peg. I'm in Ontario too and have a concentrator at home and a small portable when I go out...I also keep a couple of M tanks to take with me in case the portable quits on me, which it has done while I was at a euchre tournament..I used to keep more of the M tanks but was informed I didn't need them so I don't let on I have the 2.
I guess we shouldn't complain as OHIP takes care of the money part of it.
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Post by peg on Jun 18, 2019 21:51:12 GMT -5
Hi Barb, nice to hear your from Ontario as well. I assume your portable concentrator you take out with you, is a pulse flow, with the battery? I have tried that about 2 years ago and it just didn't give me enough oxygen. And now they decided i need to use it again, cause i was using to much oxygen, because now i am feeling better, a bit. I know we shouldn't complain, our health care is wonderful, to pay for our needs, but you know your body and what you need, so how can they say you don't need the extra little M tanks. Wow, i guess they just don't know how stressful it can get for us when and if our oxygen is going to run out. My doctor called the supplier today, and they will call him back tomorrow, so fingers crossed. Was wondering , have you been to the West Park Health Centre in Toronto? You have to get referred by you specialist and it is a 6 week program, you stay there, and if you live close you can go home on weekends. It is amazing what you learn there, all the techniques for excercises for the lungs and body to strengthen ourselves, classes, as how to save time, with getting dressed, showering, going out, coping with copd, etc. And all the staff are very nice. You take care and thanks for the reply.
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Post by gerald on Jun 18, 2019 22:23:06 GMT -5
Peg, you can get a Portable Concentrator in a continous flow up to about 3 l. They tend to be a bit heavier and the battery life is shorter so you need to have a few batteries around. At .5 l the batteries are probably good for 3 hours. But a small generator would run the portable or the charger. I just finished testing on out and it works reasonably well.
I am having a problem understanding why the pulse is not working for you. It does take a lot of getting use to especially if you are not use to breathing through your nose.
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Post by peg on Jun 19, 2019 11:04:33 GMT -5
Good Morning, that is a great idea with a small generator. Gerald, are you on Pulse or Continuous? I have tried the 10lb. portable pulse flow 2 years ago, and it was not for me, but i tried again and still am having trouble. It is like if i don't sniff or breath my oxygen in my body goes now. So when i talk or eat i have to put it up higher, and when i walk i need the 2 litres, but it is not giving out the 2 litres, seems like less. Makes my pulse and heart rate go up and down, and i don't feel good. I am more comfortable with the continous flow. I just dont know what else to say. I appreciate the generator suggestion Gerald, ty.
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Post by skate4life on Jun 19, 2019 11:36:15 GMT -5
Peg - Just as a review, scroll to about half way in his new article - copdnewstoday.com/2019/06/19/oxygen-manifesto-part-2-devices-advice-respiratory-specialists/I would like to add some thoughts - I remember when Jarca was having a difficult time. You might try an Oxymizer for your cylinder of 100% oxygen to give you a little more time. There are also 'conserver' regulators available. Do you have nasal obstruction? Can you easily take a deep breath through your nose at all? "Top breathers" frequently barely sniff their canula. It takes practice to overcome a habit of taking a rapid inhalation/quick sniff. Do you feel you do not have the strength to inhale through your nose so you are always mouth breathing? Do you feel resistance when you try? Can you contact the people at the rehab center to help you by watching how you breath, walk and talk etc? |
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Post by peg on Jun 19, 2019 12:12:24 GMT -5
Skate for life, i will read that article for sure, and great advice about the "sniffing", which i have trouble with. I will be intouch. Thank you.
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Post by peg on Jun 19, 2019 14:44:25 GMT -5
skate4life, i breathe low, so i have to sniff hard to get oxygen with the pulse and some times i don't get oxygen if i don't take that deep breath. I don't have any blockage in my nose. I am all mixed up with the ml and lpm. i am sorry to be a pain about this. I use my Oxymeter to keep track of what my oxygen i am getting, and my pulse rate. I don't know what an Optimizer is.
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Post by skate4life on Jun 19, 2019 15:20:48 GMT -5
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Post by gerald on Jun 19, 2019 16:39:31 GMT -5
Good Morning, that is a great idea with a small generator. Gerald, are you on Pulse or Continuous? I have tried the 10lb. portable pulse flow 2 years ago, and it was not for me, but i tried again and still am having trouble. It is like if i don't sniff or breath my oxygen in my body goes now. So when i talk or eat i have to put it up higher, and when i walk i need the 2 litres, but it is not giving out the 2 litres, seems like less. Makes my pulse and heart rate go up and down, and i don't feel good. I am more comfortable with the continous flow. I just dont know what else to say. I appreciate the generator suggestion Gerald, ty. Peg, I use pulse when I am out away from home and continuous when I am around home. Pulse can be a challenge at times and it sometimes requires that extra effort to trigger the machine to pulse.
Have you tried a continuous flow portable?
It is continuous up to 3 L .
And you can think of these recharging packs if you don't want a gas generator
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Post by peg on Jun 19, 2019 19:01:47 GMT -5
Gerald, i tested a pulse/continuous a couple of years ago and was having the same trouble. I have explained everything to my suppler and my doctor has called them as well, so all i can do is wait and see what they say. I have been on the pulse most of today as well, and i almost nodded off, now that is scarry. Anyways, will get back to you and all, when i know what my next step will be. Either a portable with continuous or tanks, either way i need to be outside everyday, and not sitting in the house worrying about running out of oxygen. All was good last year, and for some reason this year it has changed bosses, so will keep fingers crossed to my next step. take care.
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Post by aero63 on Jun 26, 2019 14:56:08 GMT -5
Hi! I’ve been on oxygen for a long time. I am currently on 5 ltr and 6 ltr during activity in concentrator. I have portables the size of wine bottles. Some company have different letter for the sizes so I use “wine bottle” as a reference. The pulse has a constant flow setting of 4 but it isn’t enough for me. I have to use the 6 pulse or it will not last on an outing for me. I am in the states and my company has given me as many as I need. I find it hard in the pulse setting but I normally have trouble on concentrator as well. Supposedly we are to get as much in a puff of the pulse as we do on the concentrator...I, myself, find that hard to believe. Will they possibly deliver more bottles within the month? It truly seems to be a quality of life situation for you if you need to restrict outings.
I am sorry you are having this problem
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Post by peg on Jun 26, 2019 19:34:54 GMT -5
Areo, thank you for your concern, and i totally understand what you are saying about the pulse/continuous. That is why i told my supplier, i tried the pulse and i was just not comfortable with it, and they were giving me a hard time, and limiting me to tanks, to use concentrator more and pulse. So i got backup and it has helped somewhat. Now, they told me and others they would bring tanks friday, and the driver told me later not till monday. Then i really got upset, i had only 1 1/2 size (e) tank left and 2 size (d)s, and that wasn't going to get me through from today till monday, are they nuts. I would have to sit at home like i have been for the last week and half and not go out. So finally they got the driver to meet my husband and get 10 tanks, till monday. My supplier is 2 hours away. Its all about the money, when we just want a good quality of life and be out side doing things like everyone else. Can you not switch to continuous if your finding the pulse to hard on you? Doesn't hurt to ask, its your life. Let me know, take care.
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Post by travis on Jun 27, 2019 10:11:58 GMT -5
Peg,
A couple of years ago, my Doc's (primary care) recommended my oxygen be a liquid oxygen system. What a difference. I have three "mother" tanks to use at the house; two larger tanks, about 8 pounds with a maximum 6L flow and a 4L pulse along with a small tank, 1L flow and 4L pulse. These tanks you fill yourself, I can go for a little over two to three weeks if i am careful.
I understand medicare is now very stingy with these systems because of the cost.
I do not know about Canada, but it would seem if the company is reluctant to go out but once every two weeks, this might be a solution if you can get your doctor on board.
Good Luck,
Travis
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Post by peg on Jun 27, 2019 12:02:54 GMT -5
Morning Travis. I am happy for you, you have the liquid air right in your home, to fill up when needed. Sorry to say, my supplier and only supplier to our town does not bring liquid air here. But they do have customers in that town using it. Also, i am totally on continuous flow, no more pulse for me. Thank you for the very helpful advice. You enjoy the long weekend, take care.
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everyone, it has been awhile i have been on here.. I have finally gone to a respiratory rehab health centre for a 6 week program for my lungs. It was amazing and i learned alot and it has helped strenghten me, etc. I have to keep up with my daily excercises which help. Anyways, i have a quick question and would like to see what everyone thinks. I have been on continuous flow oxygen for 4 years. I have tried the pulse flow, but it is very hard to walk or talk as my oxygen goes down to fast. Any one on here ever have to be told to use the pulse to conserve oxygen, because your using to much, and there are cut backs with the health system. I find my body can't tolerate the pulse. I went to the Centre to get better, and stronger, and this pulse is making me worse. Anyone have the same problem, i would gladly like to hear. Thank you. Oh ya, i am on .5 litres to sit and sleep, and 2 litres to exert, the centre put me at that, and i am good.
