-
Oxygen
-
Hi Patricia
Oh yes perpetual runny nose, thought it was just me.
-
@prwillie
Hi Patricia,
Thanks for writing, though sorry to hear of your saturations dropping on exertion! I’m glad the doctor adjusted your 02 needs accordingly. Do you find it a little better to manage now that he’s done that? I don’t have a runny nose due to 02, so I’m sorry I can’t contribute any tips around that, however, I get dryness in my nose from the oxygen. Perhaps someone else can share how they deal with a perpetual runny nose for Patricia?
Char.
-
Hello everyone!
My mother has been using O2 supplement 24/7 from last 8 months and then we bought a Oxygen concentrator called Oxy-Med, Model MAOXY 05 and we have 2 small cylinders for back up. Previously the amount of oxygen flow was enough from the concentrator through nasal cannula but these days (after almost 8 months of using) she’s not getting enough flow of oxygen from the concentrator even with the highest level which is 5L. We have to put at the highest level even while she’s sitting but her O2 is hardly above 90 which is equivalent to 5L-6L in the cylinder (the highest on the cylinder is 15L). Even with the highest level on the concentrator now through oxygen mask, my mom’s O2 fluctuates alot. So my questions are:
1. What is the highest level in oxygen concentrator?
2. Should we change the oxygen concentrator with a better quality one or it’s more or less same with all oxygen concentrators? My mom’s doctor had suggested to purchase an American one which is apparently a better quality. Have anyone of you have used this american one? Can you guys suggest which is a good quality oxygen concentrator?
3. Is anyone using oxygen mask?
We’re very confused so please feel free to suggest anything ?
Best regards,
Reshma
-
My O2 levels fluctuate wildly too, my levels are rarely above 90 and as low as 55 with little effort. Luckily for me at rest I don’t need O2, but am waiting to have the little op to double check that I now have PAH (pulmonary arterial hypertension) as my need for O2 has drastically increased in the last three months, my POC is no longer (setting 5, its max) enough, cannot even walk a few yards without dropping drastically, was able to walk 2 kms in late July. With Covid about there are no pulmonary beds available at the moment even though, or maybe because, I live out in the country.
Cannot help you re concentrators (max 5l) as mine is supplied free by the health service.
Please don’t be offended but are you cleaning the filters free of dust and changing the lines frequently enough, I ask because during lock down my supplier didn’t come and I used the lines for 2 months each and one almost completely blocked although nothing was visible at all.
-
Hi @reshma ,
Nice to hear from you and thanks for updating us on your Mom’s condition, though I’m really sorry to hear that her need for oxygen has increased. It’s really important to ensure that the source of 02 – be it a concentrator (stationary or portable) or cylinder – is providing her with enough supplemental oxygen. Unfortunately, portable oxygen concentrators (POC) are very limiting for people who require a lot of oxygen; most only going up to 5LPM and even that is dependent on how active a patient is doing (and ‘litre per minute’ is also a bit vague). I only use my POC when I travel, because it is a lot easier than coordinating cylinders but the amount of 02 I can get is a lot more on my permanent concentrator or my tanks. It might be worth explaining the numbers to your Mom’s doctor and asking for a permanent/stationary concentrator for your home as these have higher flows, or bigger tanks.
We can’t recommend a concentrator for your Mom unfortunately as we aren’t medical professionals or know her prescribed 02 needs. It would be good to have this discussion with her doctor or even 02 provider though, they may have some better solutions for you! Let us know how it goes if you’re able to talk to the physician 🙂
Char.
-
Hi @reglois and charlene
Thank you both for sharing your experience. About the oxygen concentrator, we’re only using stationery home concentrator which has the highest level of 5LPM. So I was wondering if there are other better stationery concentrator with higher level (higher than 5LPM) ? Also she’s wearing an oxygen mask these days instead of nasal cannula because a nurse had recommended to do so for a better effect. Is it safe or okay to wear mask all the time? -
Hi @reshma ,
Oh so sorry, I misunderstood what kind of concentrator your Mom is using at home. I’m not sure which concentrators/if any exceed the 5LPM. However, this is information your Doctor would know or even the oxygen provider, they might have some additional recommendations. I/we cannot recommend the use of the oxygen mask frequency, this is something only a medical professional can advise. Can you ask the nurse who made the recommendation?
-
I have read of people doubling up on concentrators if they can’t find one high enough for the patients use. This maybe be something you can discuss with your doctor. How this is attached to a cannula I have no idea. Is it a cheaper option? Don’t know.
-
Thank you to everyone contributing to this thread. It answered questions I didn’t even know I had. I have noticed that when I’m super tired my oxygen levels are low.
-
Hello Janey, it is most likely the low oxygen causing your tiredness. I’m going to assume this usually happens in the late afternoon or early evening. I had same problem. I was usually strongest during the morning and early afternoon hours. Thank you for engaging in discussion. Take care, Mark.
-
There are sure alot of people today talking about oxygen. So I am going to join in with my experience. I think I have told everyone when I first joined the group that I am new to IPF. I was in the hospital the beginning of the year for 3 months and in rehab for a month to learn to do things again. The hospital is where I found out I have IPF after they did some exploratory surgery. It was shocking to find out I only have 1 lung left. I was wondering why I was always so tired and just couldn’t do much of anything. I was told that it started along time ago and it was possibly caused from chemicals. That I couldn’t under stand because I hadn’t worked with chemicals t hat I could remember. Then it dawned on me. In 1976, I worked for Owens Corning and had been working with chemicals. I asked the doctor how can something that happened so many years ago cause this problem now. He said it stays in your lungs and meteralizes at a later date.
So, that is how I got IPF. I was told I had 3-5 years, but not the starting point. The oxygen level I need is never below a 5 and that is setting still and sleeping at night. If I get up to do anything, which isn’t much anymore, I have to go up from there. Usually 6-7. My oxygen machine doesn’t go that high, so they had to put 2 together so it would go to 10 if need be. I have been reading how peoples oxygen level is in the 90s. I wish my was. Very rarely is mine that great. My best is 88/89. It has been lower. I also have afib, which doesn’t help the situation at all. My heart rate goes all over the place. It goes from 40 to 135 to 60. So, I am constantly on the watch for those 2 figures to make sure I am going okay. If not, I have to set till things get back to normal.
We all have pretty much the same problem, the lack of breath. But we also have the same desire and that is to live to see another day, grandkids and kids and of course your mate. I have been doing a lot of studying of the different drugs being used in experiments. There are a lot and some are to be out next year. The only 2 that are out now have a lot of side effects that I don’t want to have, so I do the best I can with a couple that my doctor prescribes. They help on the caughing and are suppose to help on holding back a little on the scaring.
Everybody, I wish you a good afternoon and a long life.
Randy
-
That is how I got CPFE too Randy 30 years ago was the origin, started to rear its ugly head four years ago. I have nearly passed the date of the doctors dire prediction, still here and on my feet. Surely you cannot have IPF when you disease was caused by chemicals, Idiopathic Pulmonary Firbrosis is from an unknown origin. Non Idiopathic PF tends to run a different course from Idiopathic PF Like you I am not prepared to ruin what I have left of my life by taking Orfev nor Esbriet, they have also offered me CellCept, just as bad as the other two and wiping out completely the immune system, no thanks not with Covid around. They now think I have Pulmonary Arterial Hypertension but no hospital beds available because of the pandemic, so I just have to wait and hope I can hold on as my need for O2 has rocketed and my machines can no longer supply what I need. If I sit I can stay around 89/92 even without O2 but move I plummet to inbetween 55 and 69 with O2. The coughing is horrible isn’t it? Stay safe everyone
-
To Susan Howitt, I know what you mean about how can chemicals be the problem from years ago. I thought the same thing and chemicals? My doctor said that the “Idiopathic” does mean unknown, but in my case they had determined it to be chemicals. All I could say was okay. I knew nothing about the disease at that time. Thru studying different articles on the internet and reading what everyone has to say here I have learned alot more. I have been studying any article I can find about the different medicines that are being studied and developed. There are alot in the works. The ones that are inhaled seem to have the best results so far. They go directly into he lungs and don’t have to travel all over to get to the actual destination. Total there is 20 currently in the study. Right now I am on prednisone and NAC. One helps with hurting and the other is suppose to slow down the scaring. Hopefully it does. I was starting to get a cold and was put on doxycycline hyc to curb that. I was told if I get a cold and it turns into pneumonia which would put me into the hospital and I probably wouldn’t walk out since I only have 1 lung left. Well, that is what I have to say today. Be careful and have a good day.
-
Hi Randy
Do you have the emphysema along with your Fibrosis. I have a fistful of complication Fibrosis, Emphysema which equates to CPFE plus Bronchiectasis and Systemic Scleroderma the latter is the b……..r. I was highly allergic to one of the inhaled drugs, and reading up on my CPFE it is also something that is not advised for that disease, I am left with very little choice. I also take Prednislone 10mgs (called that here) tried NAC, again allergic so that was that. I also have to take Omiprazole for GERD (thank you SS) and gababentine for the coughing, started back on that the day before yesterday as my rib cage and throat hurt so badly and was coughing up blood. I haven’t much lung capacity left either, I was down to 30% maybe more now. There is very little information here, even the professor doesn’t seem to know much about what I have and treats me for IPF which doesn’t follow the same course at all.
Stay safe
-
Hello Susan and Charlene
My mom got hospitalized again today. This is the second time she got hospitalized in 2 months. She was not getting enough oxygen since yesterday so we had to take her to hospital. Fingers crossed ?Susan, you wrote about doubling up the concentrator. What does that mean? How does it work? We’re having a hard time finding a concentrator which has more than 5LPM. The provider was saying they haven’t imported such high level concentrators yet in Nepal. So this doubling up concentrators might be an option for us. Also if anyone has such experience please share ?
Reshma
-
Two 5lt concentrators in tandem, making 10 ltrs (I believe some one on here has that system) although I don’t know how they link up. There has to be a little gizmo that links the two concentrators to the air line. rather like in fish tanks, NOW there is an idea !! I do have some of those !! I would like to know too as I am waiting to go into hospital to get assessed to see if I have PAH and for a higher concentration of O2 as severely struggling on what I have now.
Hope your mother recovers again soon and that you can find the answer to a higher O2 output.
-
Hi Reshma
Knew I had seen some one on here with concentrators in tandem, they are using three in tandem it is participant Sarv Punj @sarvpunj (July 14th 2020) I hope he answers for you. Please share if he tells you how to combine them
-
When I was first put on oxygen the 02 team told me the funniest question they’d been asked was “can you overdose on oxygen?” The answer was no.
-
Thanks for sharing that Janey! Believe it or not, I’ve heard that question asked too. Glad your physician was able to clarify it for you and thanks for reiterating it to the group 🙂
Char. -
Hello one and all
Just come out of hospital, what an eye opener, just knew my *professor of pulmonology* was wrong. He told me I needed to learn to breathe properly (July 2020) when I had my six monthly review and he had also now got it in his computer that I have IPF, no I have CPFE and have had that since initial diagnosis in 2016 confirmed MRI scan in 2018. I went to my GP and asked to be referred again to a lung doctor more locally who actually listens. Hospitalised, scanned my fibrosis has spread to the top and bottom of both lungs, hence my inability to breathe on the 2 litres the professor kept me on, said he was thinking of upping my resting oxygen to 3 litres, don’t need upping at rest. After loads of testing local lung doc has found I need to be on 6 litres per minute when doing any moving about at all.!!! Got these HUGE tanks and a POC that I have to fill myself from these oxy tanks, hopefully will soon get the hang of it, also have a 15 metre line to the big tank for when at rest on 2 litres per minute. Oh the relief of being able to move about again, my daughter is coming round soon and we are going to take the dogs to my usual forest walk and see how I go now, haven’t been able to walk the dogs in a couple of months, looking forwards to it though I know I have lost a lot of condition being idle since beginning of August. We are in lockdown but I am so isolated I know I can get away with driving the dogs the 6 kms to the forest, have to carry a legally signed document saying why I am out and about and so does my daughter sign that she is aiding a vulnerable person.
stay safe one and all
-
Hello @reglois
Nice to hear from you and happy that you’re daughter is coming to visit you. I have came to Nepal last week for my mother. I’m taking full care of my mother which I couldn’t do before. My sister who is a caregiver can relax a bit now since I’m here for the family. Have a good time with your daughter and enjoy your time.
Warm wishes
Reshma
-
Hi Reshma
Glad you are now able to be with your mum. Have you sorted her oxygen needs because what I am now on might be the way for you to go especially as your Mum doesn’t go out much. my tanks go up to 7 1/2 litres a minute and I am now sure there are higher ones.
My daughter doesn’t live too far away so is now coming daily to help me, with Covid about she and her husband have no work and no money so I can help them there. I hate having to rely on her as she is ill herself and in pain most of the time but there are a couple of things I really cannot do cos I can’t bend with out completely cutting off all O2
We are in lock down here again.
Stay safe
A bientôt Sue
-
Hi Susan,
Thanks for sharing, although gosh: how frustrating that the doctor wouldn’t listen to you and your 02 needs were compromised! So sorry that happened. I bet you feel totally different now that your oxygen needs are being adequately met, and I’m glad you have the equipment at home to support that. Take good care and enjoy being able to walk the dogs again, I hope that went well for you!
Sincerely,
Char.-
Afternoon Charlene
Very disappointed, the first back pack was calibrated wrong, no wonder I was feeling so darn good and walked 3kms with 4 stops to get my levels back up, I now know it was delivering me about 8/9 ltrs per minute, new back pack delivers 6 lts and I still can’t walk the dogs as the track is very slightly undulating and that is the problem though I do get puffed going round the super market too. Got the oxygen suppliers expert coming round next week, wondering what I can persuade him to do so I can continue to lead a life, can’t be doing with this inability to exercise.
Take care one and all.
-
Hi Susan,
Oh, I’m sorry to hear this – that is frustrating, and I can certainly see how it’s disappointing! I hope the 02 suppliers can shed some light on additional options that will help you remain mobile. I know walking your dogs is important for your mental and physical health.
Take care,
Char.
-
-
-
My dad is also on oxygen 24/7 – putting it a higher flow rate has helped with his coughing. We also started him on Ventolin nebulizer (bronchodilator), which seems to be helping. If this stops working, we’ll get him on Gabapentin maybe.
-
Hi Vishal, here is the link for the gabapentin topic I wrote, https://pulmonaryfibrosisnews.com/forums/forums/topic/gabapentin-is-a-proven-treatment-for-refractory-chronic-cough/
take care, markGabapentin is a Proven Treatment for Refractory Chronic Cough
-
Log in to reply.