• Posted by robert-nagell on February 10, 2023 at 1:13 am

    Hello,

    I am living with and caring for my mother, who has had IPF for several years, complicated by a very productive cough.  She has been reluctant to increase her oxygen as her needs have been increasing from the 2L/min she was originally prescribed, but I have been increasing it as her breathlessness has increased, while knowing that her SPO2 or oxygen levels are not the sole contributing factors to her breathlessness, but it definitely helps her at a higher oxygen flow rate.  Using the Wellvue O2Ring to monitor  her SPO2 in real time, she maintains at complete rest at 90% or higher on a setting of 3.0 L/min, but when she moves her arms sitting, or walks a short distance to the restroom, her SPO2 drops within a minute or two. If she is sitting it seems to drop to about 85%, but if she walks or exerts herself any amount, her SPO2 drops to 80 % or even less.  Her doctor advised us to maintain her SPO2 at 90 or above at all times.    Even if I increase the flow to 4.5 or 5.0 L/min (from 3.0 L/min at rest) as soon as she rises to go to the toilet, her SPO2 drops for a few minutes to the low 80’s after a walk of a dozen feet to the toilet… and we are using a nasal cannula, which at that flow setting seems to cause a nasal discharge and drying and some discomfort.  I am afraid what a higher setting would do and she rejects my suggestion of an increase in the flow rate…I hate to force the issue but realize the decision soon may call for it.

    Can anyone please advise me of your experiences?  Do you change the setting of your flow as soon as you get up to go to the toilet, then drop it when you return to sitting quietly?  If you have higher flow above 5-6 L/min, do you use a cannula or mask, and how do you eat if you have to take it off?  Her doctor recommends she see a pulmonologist but she cannot really leave the house… otherwise he wants to refer us to hospice for assistance.  I am at such a loss.  Personally, I feel that the higher oxygen levels are a red line for my mom, but I don’t know what to do.  I try to coax her to use it continuously as her doctor recommends, but there are a couple times where she just wants to walk without it, and ends up so breathless that she has to sit and hangs her head trying to recover…Can anyone please advise me of your experiences?  I am afraid to call hospice because it seem like it would be telling her it’s the beginning of the end, and I don’t know what they could do to help in our situation.  I would like her to remain at home which is her desire.  (Unfortunately, early on, she was told that there was nothing that could be done, so since that time, she has refused further diagnostics, which were very very hard on her, and further treatments other than oxygen, being that she has had significant medication side effects in the past…).  Thank you so much!

     

    meredith replied 11 months, 3 weeks ago 17 Members · 20 Replies
  • 20 Replies
  • gratefuldeb

    Member
    February 14, 2023 at 2:23 pm

    I am sorry you are going through this.  I would give Hospice a call just to see what their thoughts are on the subject.   I understand your fear in calling them but from your post it sounds to me like your Mom is already aware of the inevitable ….“she has been told that there was nothing that could be done, so since that time, she has refused further diagnostics…”  I would suggest calling her doctor and having her doctor personally tell her that increasing the oxygen will <span style=”text-decoration: underline;”>make her more comfortable</span>.  That is the goal here.  To make her more comfortable as she goes through this.  Hospice does soooo much more than you might realize.  I experienced their wonderful work as my Mother and Grandmother died.  They are there to help the caregivers not just the dying.  They offer a compassionate ear and advice.  Of course, they are limited in what they can and cannot say but they are extremely informative, supportive and helpful.  Reach out to them and my prayers are with you.

    • ali-imran

      Member
      February 15, 2023 at 2:36 pm

      Hi,

      Almost same behavior with my mother having ipf, Spo2 94% to 95% at oxygen 2.5 l/m while she is sitting. I have long oxygen supply tube of 30 feet from concentrator, whenever she walks I increase the oxygen to 4,5 litre which keeps her spo2 level avg 85%. Doc advised that she should walk little and perform easy exercises daily and he advised to increase oxygen supply upto 5 l/m at that time only.

      I use portable concentrator simplygo mini for her when I take her outside.

      As per Doc and experts nasal cannula work upto 5 litre/m oxygen, above 5 use mask.

       

    • ali-imran

      Member
      February 15, 2023 at 2:42 pm

      Hi,

      Almost same behavior with my mother having ipf, Spo2 94% to 95% at oxygen 2.5 l/m while she is sitting. I have long oxygen supply tube of 30 feet from concentrator, whenever she walks I increase the oxygen to 4,5 litre which keeps her spo2 level avg 85%. Doc advised that she should walk little and perform easy exercises daily and he advised to increase oxygen supply upto 5 l/m at that time only.

      I use portable concentrator simplygo mini for her when I take her outside.

      As per Doc and experts nasal cannula work upto 5 litre/m oxygen, above 5 use mask.

    • robert-nagell

      Member
      February 21, 2023 at 2:14 pm

      Hello Deb,
      Thank you for the suggestions.  I will contact her doctor and ask for the referral to hospice to see what they say.  My impression with my mom is that she doesn’t want any outside intervention, but I fear for her comfort.  I think it would be a very good idea to speak with the people at hospice. I’ve heard good things overall about hospice.  But I’ve heard a couple stories of brusque and hurried care that kind of scares me.  Thank you so much!

  • michael-fugler

    Member
    February 14, 2023 at 3:03 pm

    I have found that the oxygen suppliers have a great deal of experience can can offer suggestions that might be helpful, they deal with multiple people all day everyday, it is worth a try.

    • robert-nagell

      Member
      February 21, 2023 at 2:35 pm

      That is a very good idea Michael.  I will reach out to them!  Best Regards to you!

  • michael-panagiotopoulos

    Member
    February 14, 2023 at 6:01 pm

    Hello Natalie,
    I see your mother’s case is very similar to mine.
    I am 71 yrs old and have been dealing with IPF since 2018 with Esbriet (taking only 2 tabs/day instead of the prescibed 3, because of side effects) and other helper meds, but I’m experiencing a fast downturn since last summer.
    Since last Septebmer I am on O2, on a 24/7 basis with two types of concentrators; both with canulas: a large Philips Respironics EverFlo for the sitting room and a portable Inogen One G5 pulse concentrator for mobility, wich I take it with me for any (indoors) walk and especially to the toilet wich is my most tiresome time of the day. Most of the times  I have to sit  and rest in there for prolonged periods of time to get my SpO2 levels to climb from low 70s to the 90s and then try to  walk the few meters to my couch and rest.
    My pulmonologist advised me to try and maintain the SpO2 not lower than 85% and preferably into the 90s. So I keep changing the Inogen G5 O2 indicator all the time; always according to the situation. My standing up “exercise” calls for a min of 5lt/min and some times the max of 6lt/min.
    In bed I set it at 2lt/min and achieve a SpO level around 95%. Lately  my moving (and resting) breathing pattern has deteriorated and become faster and shallower (due to lack of pulmonary volume perhaps?) , which is tiresome and makes my ribcage bones ache.
    I know this is a loosing battle and I try to fight it one day at a time…
    I hope my personal experience might help you talk to your mother into making her life a little bit easier.
    In any case I would strongly suggest she talks with a IPF pulmonologist for further treatments.
    God Bless.

  • magician

    Member
    February 16, 2023 at 2:47 pm

    my numbers change like the wind. I run on 6 ltrs on my concentrator during waking hours and 3 at night.  my saturation averages 80-85% with some lows hovering in the upper 40’s. No joke.  I tend to push things a bit but I am well aware of my limits.

    All I can say is just keep monitoring her numbers and adjust as required to maintain comfort.  Do keep in touch with the doctor.  Keep a journal as well.

  • hans-m-fink

    Member
    February 16, 2023 at 4:39 pm

    Hello Robert,
    I change the Oxygen flow rates “Before” getting up for bathroom visit. Then lower it when back at sitting rest.
    Before doing any kind of movement or exertion, I always check the Oxygen saturation before actually proceeding. This all takes time but find that it has to be done to be safe.
    Resting, my settings are usually 6-8 liters but wont hesitative to go as high as 10 if necessary.

    • robert-nagell

      Member
      February 21, 2023 at 2:10 pm

      Hello Hans,  all of the responses have been very helpful.  I also adjust the settings before my mom rises to go to the bathroom.  Even though it is only a few feet away from where she sits during the day, it tires her out greatly and her SPo2 values decline to the upper 70’s or low 80’s and sometimes inexplicably even lower.  I tried to get her to use a mask, but she complained that it blows cold air into her face.  We are using 6 L/min plus, when she walks but I am afraid it is too low.  We also started using a humidifier bottle. Sometimes she places the nasal cannula in her mouth, and feels it helps when her nose is uncomfortable.  Are you using a mask at the higher flow rates?  At what point do you change from a regular nasal cannula.  Have you had any experience with the high flow nasal cannula setup?  Thank you for your time to reply to my query.  It helps a lot!  God bless you!

  • paul-narang

    Member
    March 2, 2023 at 10:25 am

    Dear Robert, I am 88 years old man I have had IPF for the last 6 years I ‘ve experienced similar situation in my 5th year of illness I was 3.0 ltrs per min. As follows is what helped me to deal with the situation.
    1.increasing the rate of oxygen is not the answer to the problem.
    2. I’ve discovered a breathing technique which is called pursed lips breathing and the details of this are from Association of Chartered Physiotherapists in Respiratory Care . Leaflet No. GL-02 How to cope with being short of breath-breathing exercises.(www.acprc.org.uk)
    3. Also in this leaflet you will find breathing control exercise.
    4. I have added myself a chest expansion exercise using pursed lips breathing and breathing control.
    5. For the last one year I have improved my SP02 it is still at 91 and I can walk more than 1 KM with oxygen at 3 litres per min. I am under palliative care and my wife has assisted in writing this reply hope this information is useful to you.
    sincerely Paul. UK

  • john-fraze

    Member
    March 2, 2023 at 3:22 pm

    You might want to try a humidifier to relieve some of the nose dryness. Also spray her nose with saline solution as it will clean her nose, prevent infection and relieve dryness in her nostrils. Best of luck.

  • chukegee

    Member
    March 2, 2023 at 3:53 pm

    Robert, just about everything that you have described about your mother is pretty much in line with this shit disease, IPF. Have you tried the med, OFEV? It does not cure, but it is suppose to prolong the inevitable. I was diagnosed in late 2013 and am still huffing and puffing my way through life. I really believe that the OFEV has given me some extra time. The ups and down of your mom’s oxygen readings are pretty much what i am going through and i expect others also. Oxygen is not habit forming so she can use as much and as often as she needs to. I have to walk up 21 steps to get to my car and it takes me five minutes or so to get there. By then my oxygen has dropped to the high 60s, low 70s. It takes me sometimes 10 minutes to recoup to the high 80s low 90s. OFEV is expensive but BI does have a program that you can apply for and if you qualify it is free. I take
    one 150 mg pill twice a day. I don’t know how long that your mother has had IPF but it may help with her state of mind also knowing that she may live longer by taking it. Hope some of this helps, Charles

  • lawrence

    Member
    March 2, 2023 at 3:59 pm

    Sorry to hear  of your Mothers condition.  I’m 82 years old and have had this progressive condition for five years,  With the concentrator set at 4 L/m, My SPO2 level is around 96 when I’m relaxed, in a sitting position.  When I rise to go to the bathroom it can drop to the low 80’s.  Taking a number of deep breaths through the nose before rising helps.

    When I go downstairs, to my hobby room, I set the concentrator at 6 L/m, while still using a nasal cannula.  After I slowly walk back up the stairs, I reset the concentrator back to 4 L/m.  If I leave it on 6 L/m I develop severe nose bleeding, even though I use saline spray mist.

    I wish your Mother could be seen by a Pulmonologist as they specialize in treating lung diseases.  I’ve ask my Pulmonologist to be frank with me and hold nothing back.  He gave me approximately 5 years to live with this disease and I know I’m about at the end of this life.  I’m very comfortable with the thought of dying as I’ve lived a long and happy life.  I now look forward to meeting my Lord and Savior.

    Lawrence

  • duncan-fowler

    Member
    March 2, 2023 at 4:27 pm

    I agree that keeping your Mom’s SPO as close to 90 as possible is essential.  I, like her, really don’t like having an oxygen tank following me around, and yes, I want to set it down and forget about it for a while!
    But when I was initially diagnosed with IPF, I told my Doctor that I had no desire to be connected to Oxygen all the time.  He responded that was all well and good, but I needed to know that not using supplemental Oxygen would only hasten my death.

    Well, I  have no desire to die now, so I suck my Oxygen and try to keep my SPO at or above 90!

    I screwed up, didn’t listen to my Doc as I should have, and didn’t exercise as much as she wanted.  Well, that has caused me to have an increased need for Oxygen and have to move from a small Oxygen concentrator to a larger one and use taller and heavier tanks too.  I have to blame myself for this!!

    Tell your Mom she can do better than I have and that avoiding the treatment will only hasten her death.
    Hospice, by the way, is not for those who are close to immediate death.  They do well with making people comfortable, and I know that some check out of Hospice after several months because they are doing so much better!  Hospice is a great resource.

    Good luck to you both!!

  • dave

    Member
    March 2, 2023 at 4:42 pm

    Deb,

    my advice on a biopsy it is not going to do anything. but put lots of money in the coffers for the hospital. I had one and I’m still in pain from it 1Yrs later. wish you the best…

     

    Dave

     

  • rthorntonbresnan-net

    Member
    March 2, 2023 at 5:09 pm

    Good afternoon everyone. This is an interesting subject that Robert has brought up. In  2000, when I was  given the great news after 5 months in the hospital. I left there on about 4l and using cylinders. They were so hard to get around with, I bought an Inogen 5 that is suppose to go to 6. Well, my lung doc says it is actually 4. I have been using it almost exclusively every since then, but have had to gradually switch back to the cylinders this past couple of months. My liters have risen, needing 5 on the cylinders and 8 on the home machine. On that level, you have to use a hi output hoses and cannibus. I keep it at the same level no matter what I am doing. Yes, your nose gets dried out and you can also have nose bleeds. Not much you can do about it.  Would be nice if someone made a continuous POC. I am also on quite a few pills for IPF and my heart. I am  considering doing a clinical trial on a drug I have been following from the beginning of it’s concept.

    Well, that’s my 2 cents this afternoon. Everyone have a good weekend.

  • Lee

    Member
    March 2, 2023 at 5:41 pm

    I’ve just written a book on how I recovered my health from being in a place that sounds similar to your mother—unable to walk to the bathroom, on 5 liters oxygen 24 hours a day, very weak. The book won’t be published until late April, but I have a number of questions and possible suggestions for your mother. I’m not a physician, I’m a former athlete who almost died from IPF at the age of 62 and I am now walking and exercising at the age of 65 without oxygen and carrying on normal life activities. I also volunteer at a large Hospice here in Florida so I see lots of end stage IPF sufferers. Your description is thorough but I have a few questions and possible suggestions that worked for me if you’d like to email me at [email protected] we can schedule a brief phone conversations to talk about what worked for me.

  • bill-mattila

    Member
    March 2, 2023 at 5:48 pm

    I am replying to my oxygen needs going up. You need to keep your needs even not letting your oxygen levels decline. I have read there is three levels in your body that need a certain level to maintain your body. Organs skin and whole body need proper oxidation. I hated to wear the cannala. But how can you live with low levels of oxygen ,cause you can’t. I have had to argue with myself after making myself sick from not getting my levels up which is stupid. I now have 3 machines in various forms to keep my blood levels up 24-7 of 90 + levels. I have had IPF for many yrs and has gotten worst over the last few years. So I take my machines with me. As at 80 yrs old I need to take care of me.
    So I ask anyone can you hold your breath forever? WJ Mattila

  • meredith

    Member
    March 11, 2023 at 7:08 pm

    Hello all.
    Most of us are patients. We can only relate our own experiences.

    Those in this discussion do not mention contacting their pulmonologist. Why would I trust my health to other patients, oxygen equipment sales people, or internet websites.

    This is a serious disease. No one knows my personal history and disease information than my doctor. Your o2 stats may godown when you first stand. Let things settle then start up. If your o2 drops below 88. REST until your sats are normal. As long as your sats go right back up you are ok. Proceed at a slower rate.

    We have an incurable disease. If we are up waking around, we are not dying from it right away.

    Don’t overthink things or try to reach perfection. A smaller life is still a life. Don’t waste it diddling around with Oximeter and changing concentrator settings.

    Meredith

    Meredith

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