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Oxygen
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Hi Vishal
For my diseases, CPFE, bronchodilators are dangerous so it is said
quote *It is important to point out that the presence of emphysema and abnormal changes in pulmonary vascular bed in these patients may be associated with an imbalance in the ventilation/perfusion ratio (V/Q), as hypoxic vasoconstriction is one of the main mechanisms to avoid worsening arterial oxygenation. These vasodilator drugs can worsen hypoxemia by inhibiting this mechanism*.
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Hello!
I have a question does humidifier help to reduce cough to some extent? My mom’s coughing has increased a lot lately so someone suggested me to put a humidifier in her room, may be this will decrease some coughs. Can anyone suggest me if it’s a good idea?
Best regards
Reshma Joshi
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Hi @reshma ,
Nice to hear from you, though so sorry to hear your Mom’s cough has gotten worse. I can’t confirm or deny whether a humidifier would help the cough, and I don’t think anyone on this site can with certainty either as we aren’t medical professionals, but we can share our experience. Whenever I get a cold, I always use a humidifier to help with my cough, and mix Vick’s vapour rub with it as well and it seems to help. I don’t know if there is a difference between a cough associated with an acute virus (like a cold) and a chronic cough and whether the humidifier would help in the same way, that is a good question for an MD. However, it might be something to try for your Mom as it would be a non-invasive, relatively easy thing to try. Let us know if it helps. Thinking of you!
Char.
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Glad to see you back Reshma
I am now on liquid O2 big cylinder that supply 6 lts per min, (3 of them) my O2 providers are bring, this Tuesday a Y connection so that I can have two cylinders joined together to go higher, up to 12lts if necessary. 10metre supple tubing so I can get about the house, I up or down the O2 as needed depending if I am at rest 2 1/2 and when moving 6lts. Each of these cylinders has a water bottle that the O2 passes through before getting to my lungs, cannot say I have noted any reduction in the cough sorry, mine is also a lot worse,but if your house is dry and too warm just put a big jug of water in there. I always have a kettle of water in my lounge as a humidifier. I also have a smaller portable cylinder that I can use to get to my bedroom where the cylinder is that I use for sleep, that is on 2lts plus another one in the car, a tiny emergency one, just in case, had to use it once already while I get used to the portable liquid O2 back pack, 7 lts per min max, didn’t realise that is runs down even when not in use !!!
Stay safe. Sue
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Hi @susan
Thank you for your reply. It’s getting harder for my mom because of too much cough esp during night and morning time. Oxygen concentrator doesn’t help her anymore so we have 3 big oxygen cylinders and 2 small. She needs 6-7 Lpm while sitting and up to 12-15 Lpm when she goes to bathroom. She’s not been able to brush her teeth lately because she can’t take off her oxygen mask so we are giving her mouthwash . She’s using high concentration mask all the time which has limited her to take care of her body.
It’s very very hard for us to see our mother suffering like this ??
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Hi Reshma
Glad to know that you now have the big cylinders and two little ones like me, great help.
I find Vicks vapour rub very helpful for the coughing at night, I rub it on my upper chest and up my neck, haven’t yet used it by day, maybe a little under her nose might help too, I find it helps with the tightness in my upper chest and eases the discomfort so I can sleep a little.
I know that your mother and I don’t suffer from the same disease, with mine my sitting and sleeping needs are pretty low, 2lts, but shoot up the minute I move which is a right pain because I am alone and have to use one of the small cylinders on wheels, to get to the big cylinders to turn them up or down, tomorrow I get the Y connection because 6lts is no longer enough when moving.
I am lucky to have my daughter come every other day to do what I can’t, frustrated that it is now most things, absolutely refuse to let her do everything and will keep going until I really can’t. Snow here now so I have to be a bit self sufficient but I know I can call on a neighbour if things get too bad, my daughter lives high up almost at the top of the mini mountain so gets snowed in well before me as I live half way down, very close knit little community here, only 10 houses in our tiny hamlet.
Take care Sue
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Hi @charlene
Good to know about your experience with humidifier and vicks vapor rub. I’ll try to contact my mom’s physician about humidifier and whether it may help or not. Thank you.Warm regards,
Reshma
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Hi Susan
It’s nice to hear that your daughter is visiting you frequently. It is very very important to have good times with your family. After all family is everything ❤️?
Warm regards always,
Reshma
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Hello!
My mom has swollen feet since few days. Is it a normal side effects from steroids or is there anything to worry about? Does anyone have such experience with swelling?
Best regards
Reshma
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Hi Reshma,
Thanks so much for writing, though so sorry to hear your Mom is dealing with this! I’d highly recommend connecting with her doctor about the swollen feet. Many times, this isn’t something to be concerned with but it also can be connected to serious issues, like problems with the heart. It’s best if your Mom’s medical team shares their thoughts with you about this, because they’re also aware of the medications she takes, level of disease progression, etc.
Goodluck!
Char.
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Hi Reshma,
I have severely swollen ankles and feet at times, always fairly swollen, if I drink too much water they get a lot worse, so it is a fine balance between drinking enough but not too much, also I sometimes put my feet up on the wall (when in bed) for half an hour, higher than the rest of my body to help drain the fluid, not able to exercise much these days though I still walk around as much as possible, because of course on my own there are things I just have to do for myself, let the dogs out and in again, have a huge garden so not too bad for them when my daughter cannot walk them for me because she is snowed in..
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Get some low dose Lasix prescription from your doctor and clear that up before it damages your skin and all. Low dose is no side effecta but you will pee a lot.
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Take enough oxygen say 2 liters to get your oxygen sat above 90. She may require higher levels upon exertion such as walking around when the blood moves faster through the lung.
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Hello!
My mom now has a complete loss of appetite since few weeks. She says she feels full all the time and doesn’t want to eat. She feels bloated all the time and whenever she eats she has pain in the upper stomach. We have talked to her doctor and they recommended medicine for Gastric twice a day but it doesn’t seem to help her. Can anyone please recommend anything? ?
Best regards
Reshma
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Hi @reshma
I’m so sorry to hear of this new struggle your Mom is having with eating and the abdominal/stomach discomfort. This disease is so unfair! I’m curious, when you said you spoke to her doctor about it, was it her lung doctor? If you can, see if he/she will refer you to a gastro physician who might be able to further investigate the cause of this bloating and “fullness”. I can’t say for sure of course as I am not any type of medical professional, but I’ve not heard of this being common with IPF. I wonder if there’s a secondary issue (could be small) that a gastro MD would be able to figure out for your Mom. Let us know and goodluck!
Charlene.
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Hi Reshma
Sorry have no advice. I have to use Omeprazole once a day because if I don’t eating is a very unpleasant experience. I eat every four hours day and night, mostly soups so that I can sip and nothing big *lands* in my stomach. I cannot eat anything spicy, shame I used to love a good curry, nothing too sweet either and I never add salt, not at all good when on steroids. I have a huge amount of water in my legs and stomach area, was given water tablets but they did no good t all, if anything made matters worse
There is a food supplement that Charlene recommends (doesn’t exist here and the one that does is disgusting) I forget the name of it. So for me soups are preferred, I am not yet losing a lot of weight.
This wretched disease seem to be a lot harder on the carers than the patients, luckily nether I not my daughter are stress type people, what will be will be is our motto.
Take care, stay safe. Sue
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Thank you dear @reglois I will definitely decrease the amount of salt in my mom’s meal.
Stay safe and take care
Reshma
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I have a PH doctor who gave me a prescription for TYVASO inhaler which cost my insurance $15k per month. It has worked well in giving me the ability to work out and get around better. I try to keep oxygenated to minimize the vasoconstrictions and vasospasms also as your soft tissue sends messages to your body to close off the poorly oxygenated areas and asks your heart to pump faster causing SVT or Arrythmia. TYVASO is a vasolidator which expands your veins small arteries vessels and capillaries for four hours a round but then allows the increase blood flow in the veins to expand them more permanently it seems in my case. If you have good insurance, but i think medicare actually covered it. I have a 39 PH score which is borderline severe and it was confusing the pulmonoligist who was blaming my lungs. I said why am i short of breath when my Saturation level is in the 90’s. So He says go get a transplant- their favorite line bleating from the mouth when they dont have technical answers and basically say go play lung russian roulette. Many doctors do not understand PH. Vasoconstriction PH is a common development in ILD PF patients. Dont let them tell you PH is all arterial calcification either.
The PH also brought along with it the lower extremity and mid section fluid which i have under control with flurosemide 20 mg a day or as needed and regular drinking of a couple glasses of water per day, elevation of feet and legs and compression stockings. hope this helps.
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Hi Ben,
Thank you for sharing your experiences with us — I agree, PH is a very complicated disease also and made worse when a patient also has an ILD. Really glad to hear your insurance covered your inhaled medication, $15K is pure insanity for a medication. Take good care and stay safe!
Char.
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I have been using the Millennium M10 stationary concentrator for in home use with a humidifying bubbler and high flow cannula up to 10L with the long green hose. Then i use the Caire Sequal V portable rolling unit at 6 L pulse with high flow cannula to get around. I use 2 liters sitting and sleeping with a low flow cannula. Very happy with these machines. I hope this information helps.
I also had loss of appetite with my PH and ILD PF but no real bloating. I am down to my early High School weight before football. It got a little better as my PH and lung oxygenation healed a bit. These gastric issues sound like a job for a doctor(s) and could have varying root causes unfortunately.
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I have no doubts that the information you shared about your concentrator preferences will help others, Ben! Such good information to have, especially from a fellow patient. Thanks for taking the time to share it with us.
Charlene.
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Hello Susan and everyone signed in. I was going over the long list on oxygen that I have read many times, but each time we have a new addition, so it makes it informative. Susan, the last time I signed in you had asked if I also have emphysema and yes I do. I also have afib, cad and a few more illnesses. My home concentrator only goes to 5 like pretty much all of them. It got pretty bad this past summer and fall, so had 2 get a 2nd one and run together. Boy, does that make a bedroom hot. Anyhow, this past fall I went back down to using just 1 and it works okay now. Well see what happens this spring and summer when I am outside more. I hope to do some yard work, that we’ll have to see too. That is my 2 cents for today. Everyone have a great day.
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H Randy
Sorry to hear you have a catalogue of complaints like me, doesn’t make life easy.
Can imagine how having two concentrators running at one makes a room unbearable beside the high electric bills, happy to read that you have managed to get back down to one and are hoping to do yard work in the Spring, brilliant, hope it comes to fruition. I am now on liquid oxygen as the concentrator just wasn’t anywhere near enough, struggling to go out now as the max on the liquid O2 back pack is 7 litres per min, and it is soooo cold on your back, also it doesn’t suck in every passing germ as do the concentrators, as I am on my own I have to shop for myself now and again.. Happily I have had to change pulmonologists, was made to feel that the oh so highly qualified professor, washed his hands of me when I refused to take Esbriet and another two equally horrible pills, preferred quality of life to quantity, my life, on the liquid O2 back pack there is no way it lasts out to get me to the original hospital and they haven’t the means to refill so much happier with a less qualified doctor and actually tests my needs and doesn’t just ignore.
Stay safe every one Sue
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Hello, I have only been diagnosed with IPF since last June. So far I only have mild symptoms. I been taking Ofev for about two months. Can anyone tell me on average when do people with IPF have to start taking oxygen? My O2 level is about 93% at rest. This forum is very helpful but sometimes discouraging to hear how some others are doing.
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Hi John,
Doesn’t seem to be a formula as to when people need to go on O2. Apparently some can go for years and others go down hill faster.
Hopefully you are one of the former
Cordialement Sue
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Hi John, unfortunately this disease is quirky. Every case is different. There is no set timetable for when a patient is prescribed supplemental oxygen. At any time there could be an exacerbation and all of a sudden a person can go from no o2 to a high amount of o2. Although, there are some patients who are experiencing difficulties there are many who are living with a high quality of life. It sounds like you are doing well. Please stay active as you can even if it’s walking everyday. Keep living the best life you can. My hope is for you to never need supplemental o2. Have a great weekend, Mark
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The results of my recent 6 min walk test indicated that I qualify for supplemental oxygen during exertion. I now have a OxyGo Next oxygen concentrator. I am very active so I’m trying to adapt portable oxygen in my daily life. I also believe that I should try to keep my oxygen level as closes as possible to that of a normal person (94 -97). Unfortunately I don’t know when my level drops (I believe I can feel < 80) but I would like to know sooner. I do have a finger pulse ox meter but it takes time. I think wearable technology is the answer. Has anyone found anything that works? I’m looking at the Apple series 6 watch but haven’t made a decision. Also how many of you carry your portable oxygen in a backpack while working, like in the guarding, light construction work, walking etc?
Dave Sabatelli
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@alberto
Hi Dave,
Thanks so much for writing, though sorry to hear your 6MWT qualified you for supplemental oxygen. The adjustment to life with it isn’t easy so I hope you’re treating yourself with some grace around this. I use a backpack for my 02 tank (D sized) but haven’t found a good one for the concentrator I use. It’s relatively heavy so if it isn’t over my shoulder via the attached strap, I’m pulling it around in the cart.
It’s so important to note oxygen levels below 89, because it can be damaging to your other organs if you aren’t getting enough 02. I would imagine you’d feel anything below 80. I do have the Apple watch 6 to monitor 02 levels, and am seeing some interesting trends. There was some literature released questioning the accuracy of the Apple Watch 6 and the 02 readings. However, I’m finding it interesting to see my levels and find them to be reflective of how I feel (I think anyways!). This feature, coupled with all the other safety features of the Watch was worth it for me to trade in my 5, so the series 6 didn’t cost me very much with the trade in value. Not sure if this helps? Feel free to DM me if you have any particular questions.
Charlene.
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When I was able to be more active I wore my back pack to do everything, living where I do pulling a trolley would have been a right pain and very restricting and ex broken collar bone made it out of the question to carry a shoulder version, you soon get used to the weight and after a while I hardly noticed it, mine with a double battery was 10 kgs and they go up to about max 3 litres a minute on 6. A finger oxymeter should be virtually instant, how ever you do have to stop then put the thing on your finger, you can’t wear it and expect an accurate reading when on the move and yes you can feel 80 and below, me I got lightheaded and my vision went blurry. I now have a liquid O2 back pack, even heavier when full and that goes up to 7 l per minute, now not enough sadly.
Stay safe Sue
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I thought you all might be interested in this. I just signed up for my next 5 years oxygen supply and I noted the 1st Medicare payment to the supplier for Liquid oxygen. How about $74.18/month? Of which I’m responsible for 20%, though my gap insurance pays it. Do you wonder why DME suppliers are loath to supply it. A plumber charges $60 just for a visit. There may be more coming in on the next bill, I’ll keep you posted. That was actually December’s bill so there might be an increase for 2021. And remember that in the US payments cease after 3 years but the supplier must continue free for the next 2 years
Bill
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Hi Bill
Lucky to be here (France) where I pay absolutely nothing for my oxygen, don’t even have to have an insurance, in fact as some one with a life threatening disease I don’t pay a penny for any care, cancer and heart disease also come under this heading, it is all paid for by the governments health care system. Have to pay for the odd medication monthly, I cancelled my health insurance as it was at 70€ a month and the medication came to 7€ monthly !!!! guess which I would rather pay.
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Susan
I assure you that money is not my problem with ipf. -
Hi Bill
No I wasn’t suggesting that money was a problem for you, just stating how lucky I was not to have any worries at all on that score over here. I know it can be with some insurances or lack there of, can be critical for others, reading about the costs of some vital medications over there, if accurately reported.
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Are there any of you that have IPF using a CPAP machine when you sleep? If yes, does it help or hinder you? I have been using a CPAP for about two years now and in fact, I think that is what damaged my lungs. They (University of Washington) can’t find anything specific. They said I have chronic hypersensitivity pneumonitis. My pulmonologist diagnosed me with IPF. I had a blood test in Oct. and it came back saying I was allergic to several types of mold. I used to not clean my CPAP but once every two or three weeks. Now I have an electrical cleaning machine and I clean it every other day. I am on Ofev but not supplemental O2. My O2 level is around 93% at rest.
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