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Oxygen
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Hi Sita,
No problem at all, I’m glad you found my reply helpful along with Susan’s. We’re better when we can support each other, and I’m so grateful for the forums platform and being able to do that. Definitely call the township and ask about any emergency preparedness support or programs they offer your area, as it may look different from what we have but I would imagine they have something available. If not, ask them what they recommend for people who rely on a power supply to get oxygen, they will likely have some sort of solution just not sure what it looks like where you are.
I’m glad the 02 provider is requesting continuous flow oxygen as well, that’s great. It will be more comfortable for your Mom, as her saturations should be over 90 with supplemental oxygen (I would think, keeping in mind I’m not a physician). Take care, and glad you’re finding the forums helpful.
Sincerely,
Charlene. -
@anjanaiyer
Hi Sita
Thank you so much for your reply. Every responses people give are so important to us. We understand now that the weight loss is normal but as children we sometimes get very stressed out and keep reaching out to the people with similar disease. It’s always very helpful. My mom says she has some irritation when she drinks milk so now we have stopped giving her milk products and searching for other alternatives.
Also I would like to ask you is your mom taking steroids everyday? I can see that the doctors in different countries have their own ways of treatments and in our case my mom’s doctor doesn’t prescribe steroids unless it’s very severe. But when she takes those steroids she feels good and a little bit active so we asked her doctor of giving small doses of steroids everyday but they didn’t agree for it. That’s why we’re always confused about these steroids. Is it good or bad to take it everyday? -
@reshma
Dear ReshmaI find a lot of similarity between our moms. She says the same thing about milk too.
Steroids doesn’t cure any condition, it only gives them some relief. My mom and I resisted taking steroids until she could hold out. Then we agreed to 5 mg per day, it was then increased to 10 mg if we needed to travel or do something outside home. Her condition worsened in her last travel to India, I don’t know if it is the air quality or the pollution, I accompanied her back to here. Ever since that she has been on 20 mg, May she worsened a bit so we increased to 40 mg for 2 weeks and then brought it down to 30 and now to 20 mg again. You can talk to your mom’s physician, but again this is not a cure…you are only treating her symptoms.
We have also tried homeopathy. It worked for sometime but not much options now 🙁
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I have gone through some of the correspondence on the need for Oxygen. I would like to share my experience as I am closely monitoring the condition of my wife. It’s true,Oxygen requirement for individuals suffering from IPF or other COPD disease is unique to individuals. My wife started using oxygen about 1 1/2 yrs back @ 2-3 lpm constant flow however with the progression of disease it increased to 4-5 lpm till as late as January 2020. Lately she suffered 2 episodes of exacerbations , one in February and another in first week of July which has resulted in tremendous increase in Oxygen need. She is now needing Oxygen @ almost 20 lpm. I am using 3 oxygen concentrators in series to get that amount of Oxygen supply. We have also obtained 2 Jumbo Cylinders as standby for in case of an emergency.Mind you , I am talking of round the clock supply of Oxygen , not intermittent. She was in hospital for 8 days but due to fear of COVID, we got her home last Wednesday and arranged everything at home.
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Hi Sarv
Sorry to read your wife is having to have such a dramatic increase in O2. I have also had 2 exacerbations this year but no where near a severe as your wifes. Covid is such a big worry for all of us.
Cordialement Sue
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@anjanaiyer
Hello dear Sita
I always feel so sad to hear about the pain that our loved ones are going through. I feel so helpless at most of the time.
I live in Sweden with my husband and my parents and younger sister lives in Nepal. Since you said you’re from India I can now relate many things between us. Doctors in Nepal are very unsupportive, they just prescribe medicine and nothing else. The best thing I have done in my life is to join this forum. It has been so helpful to us and we have adopted many advices from this forum which has helped my mom alot. Yesterday when you shared about giving Ensure to your mom has brought me to attention about such things so I immediately talked to my sister and she arranged it back in Nepal. So thank you so much for that ?
Because of this Covid, things are so bad in Nepal that medicines are out of stock since they’re supplied from India. We don’t know how we gonna manage that ?
It was very good talking to you Sita. Take care and warm wishes to your mom ?
Reshma
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Charlene,
I’m addressing this to you because you are the moderator, but it applies to several recent posters and everyone who is on O2. I have thought long and hard about this and I feel an obligation to say it but I don’t want and will not get into any argument about what I am going to say. You can believe it or not – your choice. It’s your life! (Not you personally, Charlene, everyone with serious lung disease who needs oxygen.)
POCs that have controls for pulse 1-6 do not mean 1 to 6 litres/min. I don’t care what the salesman told you. Makers are free to put as many settings as they like and each maker may mean something different.
Read the manual for your machine issued by the maker. Most show the bolus or puff of air for each setting. For example, Oxlife Independence: Pulse setting 1 = bolus or pulse of 16 mL, Pulse setting 6 = 96 mL and usually you can take 20 breaths/min. Simple arithmetic will show you that this is not 6L/min.
I have never seen a genuine maker’s User Manual that claimed a pulse rate of even 3L/min. I have seen altered excerpts on E-Bay that claimed it. Makers, and I have read everything I could find on the net, never quote pulse rates in terms of L/min (They quote bolus size or are completely silent on what pulse rates mean).
This only applies to machines – oxygen cylinders, gas or liquid may have controllers that say “C” or “D”. C means continuous and D means demand. If you set it, for example, to D 2.5 the regulator will deliver a puff equivalent to 2.5L/min when it senses your inhalation.
If your O2 level is dropping to 79% you are not getting enough oxygen whatever the reason and you can fatally damage your health over a period of time.
Stay safe everyone.
Bill
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Hi Bill
Your post made me go and look at my **Fiche de liaison oxygénotherapie** which the technicians have to fill in each time they visit (last visit due missed because of Covid) and in it is the debit L/mn at rest and effort 1l and 5 two different machines, the first one has been put up to 3 on their last visit, the POC is on max at 5. Now I must admit that although for the static machine notes it does say debit 3L/m, they only say debit recorded for the POC, 5, no L/m after the 5 and yes I really struggle and often go down to 79 and even below this at times when walking and have to stop to get back up to 91, takes about a minute.. After reading your post I will have to speak to some one. Thank you
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I did edit my post after looking up my machine on the net, the edit didn’t register, but yes it does say it goes to 5lms which for me is not enough
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Dear @charlene
I shared everything you said with my sister back in Nepal and she has bought similar to Ensure. Thank you so much for the info.
Yesterday night my mom woke up to go toilet and there was power cut for a while so she couldn’t use oxygen but it was so hard for her that she fell in the ground and my dad and my sister heard her falling then they give her oxygen immediately. They went to the hospital this morning and asked to do x-rays and CT scan. X-rays showed a bit increase of the scars. Her doctor said to get admit in the hospital for monitoring but my mom didn’t want to stay so they came back home with. She’s been prescribed steroids 40 mg for a week. Should she have stayed in the hospital? I was telling her to stay in hospital but she says they give same oxygen and steroids in the hospital as well which I’m having in home. So we’re very confused about this situation whether to let her stay at home or in the hospital.
Warm wishes
Reshma
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Me personally would never stay in hospital if I could help it, your mother feels more comfortable at home that is obvious.
If there is a short power cut, get your mother to lie on her left side, always have to head of the bed raised, on bricks or by a wedge pillow, and as long as she doesn’t panic or move about too much she should be OK for a good few minutes until the power comes back on.
Taper down the steroid after the week can have some nasty side effects if just stopped suddenly. Took me nearly a month to come down off 60mgs back to my usual 10mgs.
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Hi @reglois (Susan)
Thank you so very much for such a prompt response. I’ll share these suggestions with my family ASAP. Thank you ?
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You are welcome Reshma
Must be hard for you to be so far away, I like you reply on help and suggestions on this forum as I am in a foreign country and live alone. My combination of lung diseases is not well known here so I rely on the States and Canada for research and information and also I find things out for myself and lying on my left side eases my breathing enormously and a wedge pillow or something under the top end of the mattress or even bricks under the top feet of the bed is a great help, I put a pillow under my hips/backside to stop myself from sliding down the bed during sleep.
Bien cordialement Sue
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Hi @reglois
I can understand you so well since I’m doing the same. Healthcare in Nepal is not good as US, Canada or Sweden and also this disease is not common there. Doctors never provide any information at all besides just prescribing medicine. We were so frustrated and felt helpless. Since I joined this Forum it has been very very helpful. I’m very grateful to everyone in this Forum ?❤️
Thank you Susan for your suggestions about sleeping positions and all ?
Take care
Reshma
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Hi @reshma & Susan ( @reglois )
Thanks so much for sharing this experience, though so sorry to hear of your Mom’s struggle when there was a brief power cut from her oxygen. That is so scary when it happens! Does she use both tanks and a concentrator Reshma? I always keep one tank filled at home, which doesn’t require a power source, for instances when I lose power. I know it isn’t as easy as that, but an option to have nonetheless. Glad the hospital saw her, and I hope she is doing a little better now?
Unfortunately, I can’t advise on whether or not she should have stayed at the hospital as I do not have a medical license. The only thing we can share is our experience, and maybe what we (as patients) would have done, similar to Susan’s comment. However, one person’s experience is not always reflective of others’, so Susan may not have stayed but I might have as an example. It depends on many factors like the support she has at home to ensure she is safe etc. I would hope that if there was imminent risk to her, that the hospital would not have let her leave. I’m sure she is more comfortable at home, like we all would be, however, each person’s experience is different. How is she doing on the steroids and 02 now?
Charlene.
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@reglois
Good advice Susan, thank you for sharing.
@reshma : please ensure you follow the doctor’s advice on her steroids, and tapering down on them. It is important that information on this forum is not substituted/replaced for any medical advice, even though patient’s have a lot of insight to share. I hope your Mom is doing a bit better now.
Sincerely,
Charlene. -
@warlock ,
Hi Bill!
Thanks so much for writing, and reminding everyone of that information. You are correct: the setting on the POC is not reflective of the oxygen LPM being delivered (for concentrators), and the maker of the machine should always be consulted, in addition to your physician, when determining how much 02 you need. I hope most individuals know/understand this, but just reference the settings as part of conversation (I know I am guilty of doing this sometimes). This is always good information to remember when discussing POCs vs. tanks, thanks for the reminder 🙂
Hope you’re doing well.
Charlene. -
Hi Charlene
We do have a separate oxygen cylinder for such power cuts cases but last night my mom thought she would be okay just to go to the toilet so she didn’t put oxygen cylinder. Thank God she was okay as soon as she was given O2 .
Yes, we follow the rules of taping down the steroids and will keep on doing so. She’s a bit fine today after taking steroids. Hopefully this will ease her for some time.
Thank you for your concern ?
Warm regardsReshma
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Thanks for letting me know Reshma – glad to hear today is a bit better, and I hope she continues to improve. I’ll be thinking of you both!
Char. -
Hi dear Charlene, Susan, Sita:
My mom’s CT scan and blood report came today and it’s not good. Doctor said my mom’s fibrosis is increasing rapidly, the report said so. He told my sister she has 1-2 yrs now and asked not to tell my mother about this. The doctor said we need to make her exercise and walk more.
She’s taking Emsolene 40 mg steroids for a week now but he said to completely stop after 7 days, no taping down. Is it safe to stop like this? Doctor said since it’s only for 7 days it’s ok not to tap down. So we’re bit surprised about that.
It’s a very hard day for us today, me and my sister to get this news. I can barely even hold myself. My mother is just 57 and this fast these things happened. Please help us with any advices, information or suggestions about how she can fight this disease ?
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@reshma
If it is any help, I was given 1 to 3 years, STILL here after three years even though my diseases are advancing fairly rapidly too, I have always tried to keep as active as I can, before the diseases hit I would walk 10kms with my 8 dogs, now only have 2, this March I could walk 4 kms, on the flat and now only 2kms and no inclines at all but I push myself hard even if it is a struggle to breathe, I take my dogs into the forest (drive there) and take notice of all around me helps to keep going, I have my oximeter with me, I have to stop every 200m to let my blood oxygen get back up, dogs look at me and now know the click of the oximeter when I turn it off and on we go, have a little step counter too.. Don’t give up hope please, your mother has to believe that she can do this too. Determination and sheer pig headedness is me, the disease got my husband, will not get me so fast.
Surprised the doctor didn’t make sure your mother was exercising before this. I also have a machine that has tension straps on it, this is useful for exercising the lungs as well on days when I can’t go out. At the moment here is it pretty hot 30° even in the evening and I struggle, damp and windy not good either.
Don’t let yourselves believe this is the end, it is not, you getting down will not help your mother, brave face and we will fight this together attitude. Good luck.
I am not a doctor but personally from experiences I would taper off, I am surprised at how many doctors don’t tell patients to taper.
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Hi @reshma ,
I am so sorry to hear about this news! I can only imagine the difficulty you and your sister are going through right now. This disease is so cruel and so unpredictable.
Did she have a high-resolution CT scan (HRCT)? This shows fibrotic development best. I’m not sure what blood reports would reveal this, but of course the medical team knows more than I do. Like Susan said, Doctor’s predicting prognosis isn’t always right. Many of us were told we had 3-5 years and have exceeded that by far. However, I am most concerned that the doctor said not to tell your Mom this news. That should be your choice, and your Mom’s… not the doctor’s. If she wants to know, she has a right to know what the doctor’s are relaying about her care. As hard as it is, exercising is very good for her, all of us, with a pulmonary condition. Have you checked out Noah Greenspan’s online bootcamp through the Pulmonary Wellness Centre? You can read about it HERE.
This may be a good option for her to try at home.
I can’t give advice, neither can anyone without a medical license, on the tapering of the steroids. Is there another physician you can obtain their thoughts on regarding this, if you aren’t confident in the current doctor’s plan?
Thinking of you! Please keep in touch.
Charlene.
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Hi Sarv,
Thank you so much for writing and sharing your thoughts on 02 with us. I’m so sorry you’re having to learn all of this to support your wife, but she is so lucky to have you! Enduring an exacerbation is very scary, so I can imagine both of hers in February and July were tough on both of you. Kudos to you for being such an advocate and strong caregiver for her!
I hope she is managing okay at home. I don’t blame you for not wanting to keep her admitted to the hospital amid the pandemic.
Take care,
Charlene. -
Hi Charlene
Yes I agree with you that the doctor should not have said not to tell their mother BUT, my husband gave up when told so I suppose it really does depend on the personality of the patient but of course it is up to the family to decide that, not the doctor.
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Hi Susan,
Yes, I agree: it does depend on the person and situation I suppose. What didn’t sit well with me is that the doctor advised their Mother not be told, rather than give that as an option to Reshma and siblings. Presenting all the options in terms of relaying information is important, I wish the doctor would have done this. Thanks for writing 🙂
Char.
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