Log In or Register to Join The Conversation!
Viewing 23 reply threads
  • Author
    Posts
    • #25367
      Liam Mullaney
      Participant

      I was diagnosed in 2017 and living with IPF since then. Yes it get worse over time and one goes from requiring no supplementary oxygen to using oxygen for any tasks requiring any effort at all. However, in the last 6 months I have noted that my oxygen levels drop during the night when I’m sleeping and this is concerning. I sometimes wake up feeling exhausted and sometimes with a headache. I use a Garmin Fenix 6s watch which records my SpO2 so I can see the levels while I’m sleeping. I’m reaching out to see if this is a normal progression of the illness and if anyone has similar experiences

      thank you

      liam

    • #25391
      Stephen Gould
      Participant

      I started using O2 connected to my CPAP tubing, and sleep so much better with my sats up at night.  I’m now 24/7 on at least 6 lpm.

    • #25394
      Charles Whittington
      Participant

      I needed O2 at night before I needed it during the day.  My breathing was too shallow with my diseased lungs.  I had an overnight oximeter which recorded my dropping to 87 during deep sleep.  I did not know I had a problem.  The doctor was concerned about organ  damage.

    • #25395
      Charles Whittington
      Participant

      I needed O2 at night before I needed it during the day.  My breathing was too shallow with my diseased lungs.  I had an overnight oximeter which recorded my dropping to 87 during deep sleep.  I did not know I had a problem.  The doctor was concerned about organ  damage.

    • #25397

      Hi Liam,

      Thank you so much for writing and starting a discussion on this very important topic! I was diagnosed in 2016 and started on oxygen a short time later, which started with using it while I was sleeping. My doctor was also worried about the potential risk to my organs if my 02 levels dropped, and because I was so unfamiliar with the disease at the time, and how low 02 might feel (plus being asleep!) he started me on 02 during the night. It would also help my heart work a little less hard, the doctor said, as my lungs worsened if I had supplemental 02. Not sure if this helps? I don’t currently monitor my levels through the night but do routinely keep 02 on while I sleep.

      Take care,
      Char.

    • #25428
      Susan Howitt
      Participant

      I am so p……d off, just been to my ordinary doctor to ask to be referred again the a Dr locally who was the first one to give me oxygen, need to go up, my doctor gave me an open copy of the discussions between my pulmonary professor and his colleague, when reading this I was shocked, had always felt I wasn’t being treated for what I have, CPFE and I was right, all along I have been treated for IPF which I definitely haven’t got, the treatments are no where near the same, in fact there is no treatment for CPFE and luckily for me I have refused all tablets bar prednisolone as all the research I have done and of course forums have all come back with the same answer. Was given (I admit before diagnosis) Symbicort,  it nearly killed me the very first time I took it, I foolishly took another shot the next day and couldn’t move a muscle, thought I was going to die.  I, unlike those with IPF am perfectly fine without oxygen when sitting or sleeping, stay at 95 to 97, the minute I walk my sats drop like a stone to anything between 69 to 73 now, after 200metres, feel like death warmed up.  I also discovered in this open letter that I have suspected (was beginning to wonder myself because of the drastic drops in oxygen at the slightest effort) that I have pulmonary hypertension, they were discussing  right sided catheterisation, and reading this was the first I knew of it.  They call me difficult because I will not take medication nor drive three times a week for over an hour, same coming back, for pulmonary rehab,  rehab fellow says in letter,  I was short of breath because I was probably lazy and not exercising properly because of my lung problems !! was still managing daily 4kms then,  being doing all the exercises for PR, (researched) for several years now, and all the breathing techniques.  Now been offered CellCept, not a good idea to completely wipe out the immune system with Covid 19 about and the flu season coming up, so refused, I prefer a life where I feel OK with no nasty side effects from  tablets, so I am probably shortening somewhat my life but am determined to enjoy what I have left BUT I need oxygen more and more when I move.  Am I odd?, think some people would say so.  I am 74 so no spring chicken.  Used to walk 10kms a day with my dogs, 4 years ago, now struggled at 2kms.

      Sorry to moan but this letter has infuriated me, need more oxygen and lovely doctor locally has to consult with the professor but does luckily for me have her own mind.

    • #25431

      Hi Susan,

      Oh gosh, I am so sorry to hear of this experience, I don’t blame you for being upset/angry! I can’t imagine being put on either of the two anti-fibrotic medications for IPF when you actually have CPFE. Glad you had the knowledge to decline them. Will you proceed with the right-sided heart catheterization do you think? Hopefully you get a chance to address the comments, as I wouldn’t appreciate being called “difficult” and like you say, you are exercising and doing rehab based on what you can manage/are comfortable with. Hopefully they will change their tune if you get a chance to advocate and explain to them. I hope you can get more 02 as you need!
      Take care Susan!
      Charlene.

    • #25432
      Susan Howitt
      Participant

      Hi Charlene

      Calmed down somewhat.  Doctors here a classed as gods and you don’t argue with them, trouble is I do research on what I have got as it is fairly rare, and they don’t like it. The proff always tells the students that I believe the Internet,  No I research and believed the first scan results and the doctor that sat me down and carefully explained the results to me, telling me I had CPFE and traction Bronchiectasis and that it was terminal in short order, as it was fairly far advanced.    Can’t be sure that the word difficult was aimed at my refusals or the fact that I am foreign and maybe he thought I didn’t understand all, my French is good enough and after two years I do know all the medical terms etc. I just never get the chance to speak because of all the students.

      Shall probably go along with the catheterisation just to know for sure if I have now got PAH, for me that is fairly quickly life threatening.

    • #25437
      Jonathan Poland
      Participant

      I think it is fairly common for those with Idiopathic Pulmonary Fibrosis (IPF) to need O2 at night even in early stages.

      I was diagnosed with Usual Interstitial Pneumonia (UIP) about a year ago.  I have not been officially diagnosed with IPF yet because the scarring on the lungs does not display a “classic” IPF pattern yet and an invasive biopsy carries too much risk.  (IPF is one of several forms of UIP.)

      I have 3 symptoms: cough, breathlessness from exercise, and sometimes waking up gasping for air.  The last one earned me an overnight O2 study.  My saturation when I’m asleep is in the low 80’s.  Now I sleep and exercise with  2l O2 and feel considerably better.  I had thought my morning headaches were from allergies – now I understand that they too were from low O2.

      I use a Fitbit Versa to monitor my sleep.  All modern Fitbits monitor O2 during sleep and display a “relative variability”.  Mine occasionally goes into the warning zone:  that turns out to be a problem.

      I have also developed an irregular heartbeat that is annoying but, according to my cardiologist, is not dangerous.  While I was not aware of it, and don’t hear it mentioned often, an irregular heartbeat is common for those with UIP or IPF.  My cardiologist believes that this is the cause of my problem; the UIP has damaged my heart’s electrical system.

      I notice that the heartbeat rhythm problem is worse on days after I get a poor report on my Fitbit, and it usually takes several days for the heart to feel better.

      My advise, based only on my own personal experience is:  If you have any reason to suspect low oxygen at night, get a sleep study.  And if your doctor recommends oxygen at night, use it – you almost certainly are preventing other organ damage.

    • #25454
      Liam Mullaney
      Participant

      Thank you everyone for taking the time to reply with your valuable experiences. Since the post my team gave me a nighttime SpO2 monitor to record my levels while sleeping. Unfortunately, I didn’t get to use it as I ended up in A&E or ER stateside and I’m now in hospital for the week. Not IPF related , might be gallbladder??
      also Susan my daughter who is a nurse regularly says to me “Dad, shy patients die” so keep learning and asking

      warmest regards

      Liam

    • #25461
      Mark Koziol
      Participant

      Hello Liam, your daughter is correct. I agree all of us should ask questions until we are able to comprehend the information given to us by the medical professional. We should always be comfortable in our understanding of our diagnosis and treatment options. I hope you feel better soon and able to leave the hospital. Take care, Mark.

    • #25463

      @jonpoland

      Hi Jonathan,

      Thanks so much for your thorough reply, all really good information and I’m glad you got the 02 nighttime situation sorted so you feel better overall, but especially when waking in the morning. Being low on 02 would certainly cause a headache, I’m surprised I haven’t heard more about this from others actually. Getting a sleep study is a great recommendation, thanks for sharing, I had this done as well to assess my 02 needs overnight.

      Take care,
      Charlene.

    • #25469

      Hi Susan,

      Thanks so much for writing back! Sounds like such a frustrating process with doctors not being (respectfully) challenged or questioned. Patients do need to advocate for their own care, but I know that can be really tough. Hopefully you can convey that your research is based on credible sources of information, not just a general Google search as it sounds like you carefully look into information about your illness. Hopefully you get a chance to speak, the students do need to learn but it is also important they don’t come before your care or interactions with your doctors. Keep advocating for yourself and let me know how the cath goes for the PAH. Thinking of you.
      Char.

       

    • #25475
      Karen Martin
      Participant

      In regards to respectfully questioning our doctors, I found a way to do that when my husband was dealing with multiple health issues. You know how it goes: You wait for the appointment to come around and then you wait in the waiting room and then the exam room. They finally come in and are ready to whiz back out in about two minutes flat. I simply would position myself between the doctor and the door until our questions were answered. Always with a smile on my face and a BIG “thank you” when we were finished. 🙂

    • #25482
      Steve Dragoo
      Participant

      Hi All,

      Because of my age and 4 years into IPF, I am probably more willing than many to research, try something new – analyze it, adjust, and keep going.  But all of us will respond a little differently to supplements/prescriptions.

      Almost 2 years ago I was put on O2 at night and it seemed to help a little (2L). I returned to the Philippines  May 2019 and have had no O2 since, however, there have been a few times I could have used it for a short period. I attribute that to several things I have tried and mostly still use.

      WEI Laboratories helped but expensive. I could have used a maintenance dose a few months ago but no shipping here for now. Did class 4 laser for a few months but none is over here – it helped with stamina and slightly easier breathing, I would use it again if I ever get stateside. So I started E.G.C.G. and decided to stick with it even though I had some mild chest discomfort for a couple of weeks. Also started N.A.C. as per a doctor I have followed since COVID 19 and he is exposed to the virus almost daily and treats many lung cases.  Been taking serrapeptase (CAUTION) and nattokinase for a couple of years and they have helped a lot. Also been taking D3 with K2m7 (separate pill), a good B complex, fish oil, zinc, and co-enzyme Q10.

      I do take 2 meds; metformin for diabetes (11 years), and Androgel for a minor stroke and flattened pituitary 5 years ago. My cough has reduced significantly over the past several months from E.G.C.G, N.A.C and long term use of serrapeptase (CAUTION). But my heart rate jumps hard and fast when I do mild exertion because of PAH. I suspect someday that will cause a much more sudden and serious problem but I can only keep going until I can’t.

      So I hope this letter might inspire others to do some research and see what might be additional OTC options. If you have any questions please ask. These forums here are a great resource and I would have missed out on much if I had not found them.

      Stay well -Steve

    • #25496

      Hi Steve,

      Thanks so much for taking the time to write and share your experiences with us. I have no doubt that others will benefit from what you shared, and all the research you’ve been doing to maintain your condition as long as possible! I appreciate you and hope you’re doing as well as possible 🙂

      Char.

    • #25497

      Love this Karen — thank you for sharing! A subtle, but great way to get your questions answered (which patient’s deserve) and ensure the specialist/doctor doesn’t rush back out again. 🙂
      Char.

    • #25507
      Bill Kelly
      Participant

      @lmull

      Liam

      My O level improved to where I could sit and read without O.  I was sure I didn’t need O to sleep.  My doc suggested a test before giving it up.  Yes, you guessed it.  My saturation dropped to 79% during the night.  I had no detectable symptoms outside of the oximeter.

      I’m still on O for sleeping.  It’s a bit of an inconvenience but the test convinced me that my breathing is not as deep while asleep.  I don’t want to risk an unnecessary heart attack.

    • #25513
      Susan Howitt
      Participant

      My daughter tried this on our last visit to the professor and his  side kick, Michelle is the most tactful person I know..  The woman was really quite rude in trying to get us out of the door and not answer her question. I think they really have washed their hands of me because I will not take the tablets, I just don’t want to feel ill because other than severe shortness of breath I feel fine. I do have good reasons why I will not take tablets nor be held down to have pulmonary lavages just to find out how bad things are when a scan will do the same job.

    • #25514
      Susan Howitt
      Participant

      Hi Liam

      I am another one that is sure that I don’t need O2 when sleeping  I don’t need it at all when not moving, in fact I can sit and watch TV or have dinner and conversation now for hours with out O2 but as soon as I move I drop to the low 80s even on O2

      I have checked my O2 levels if I wake and they are always in the 95 to 97 range the same as when sitting. that is why I stopped the O2 at night.

    • #25545

      Sorry to hear of this treatment Susan, just because you don’t comply/conform to their suggestion of taking meds. That must be so frustrating! Hang in there, and thanks for writing.
      Charlene.

    • #26079
      Eric
      Participant

      My doc recommends use Zacurate Pro Series pulse oximeter for this.

    • #26133
      Eric
      Participant

      So I researched some articles and blogs and found interesting review about pulse oximeter https://webproductradar.com/best-pulse-oximeter

      Seems interesting.

    • #26154

      Thank you for sharing @ericmiles ! I’ll take a peak at the link you provided, and no doubt it will be helpful to others as well.
      Char.

Viewing 23 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2021 All rights reserved.

©2021 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account