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    • #14157
      paula
      Participant

      So a while ago, I saw on Amazon a wrist band that promoted that it would monitor your o2 saturation rate, heart rate, etc. Has some sort of vibration alarm that would wake you up in case your numbers drop too low.

      Sound great. Only $50. So I ordered given my levels have not been that great and it seemed like a good idea to keep an eye on my levels without having to use the thing you put on your finger. ‘

      Problem. The numbers are not consistent. Many times it said my rate was at 99%. I have not seen those numbers in a long time. Once in awhile it would say in the 80s but then go back up to 98 – 99%.

      Today while I was waiting for it to tell me my numbers, I put the thing on my finger to see if there was a difference and how much. Big difference. The band said I was 99% where as the finger thing came in at 84%.

      I am sending it back as it does not do as it promised. Than plus for some odd reason they tell you, after you get it, you have to synch it to either an Android or a Smartphone so the data can be sent there for your records. I am old school and only have a flip phone and as I told them, why should that make a difference in the accuracy of the unit. they also added that you could not be more than 10’ from your phone.

      The name of the product is Accuracy Fitness Watch, Pard PPG & PWTT + HRV Health Trackers, Blood Oxygen SpO2 Sleep monitor. I asked before I ordered if it would work during the day checking the SpO2 and they said yes. For me, it did not report accurate numbers.

      Maybe someone else can get better results, but I thought I would share my experience with this product.

    • #14168

      Hey Paula,

      I hope this note finds you doing well, feeling any better? I think if I remember correctly, last time you’d written you were having some pretty unpleasant side effects from the switch to OFEV. Any change for you?

      Wow, I’d never heard of this tool before! It doesn’t surprise me with all of our technology these days and it sounds similar to the Fitbit but perhaps a bit more vital-specific and/or accurate? As you mentioned further down in your post, the numbers seem inconsistent and I think that would be my biggest worry with a device like this vs. an oximeter. It would be so dangerous for us to rely on a reader that is so different that our true saturations. I’m glad you’re sending it back – did they give you any troubles based on your reasons for wanting to return it?

      I’d be curious to see if anyone else uses this product and their experience with it, although I unfortunately would guess that it is similar to yours. Thanks for sharing your experience with us!

      Charlene.

    • #14190
      paula
      Participant

      Hi Charlene

      In answer to one of your questions, no there was no problem with returning it. Actually talked to the respiratory nurse today yesterday while doing my pulmonary function test and she said she was not surprised that they was a problem because of all of the veins in the arm and such would make it difficult to get a better assessment of the level. Where as the thing you put on your finger it has easier access to the capillaries to get a better reading. But she agreed the concept is good but…….

      So far the OFEV has not been too much of a problem. Except for some stupid reason taking the first one of the day tends to slip my mind. I think I came up with a way to not forget it.

      Sadly I have put a new food on my list of what I no longer have interest in eating. Pizza. Simply does not appeal to me.

      Not sure if I mentioned to you but I have been dealing with a low grade fever every mid day into the evening. Among other blood tests done yesterday the doctor ordered another blood test I assume to see why I am getting the fever and bruising so easily.

      Good thing I had the test because my function test was not good yesterday. She was calling my doctors office tomorrow to tell them my diffusion numbers are very low and I need to be put on oxygen at night time. Kind of knew things were not going well and while I knew oxygen was a very real possibility it still hit me somewhat hard. I told her I could deal with being on it at night time, but when the time comes that I have to do it all the time, that is going to be rough. People do not get that even though it will help you, its like, at least in my opinion, like losing another piece of your former normal. If that makes any sense.

      I am suppose to see my doctor on the 13th of Sept but she expects I will be getting a call from them before then. We shall see.

      Hope all is well in your neck of the woods.

      Paula

      • #14210

        Hi Paula,

        Thanks so much for following up with my questions – I was curious how you made out with returning the product. Sometimes companies can be so difficult when it comes to giving back their items, so I’m really glad to hear that you had no troubles returning it! Good information from your nurse as well, and this makes sense. I think someday they will get it right, and be able to have technology assess our vitals more effectively although I can understand that it is hard right now. I’ll stick to an oximeter as well, right now. They also say some Fitbits or smartphone Apps can do these readings but I’m not entirely convinced of this yet either.

        Glad the OFEV isn’t proving to still be so problematic for you. That is at least some good news! What is not good news is your hatred of pizza now – haha – that is sad news to me 🙂 For some reason, I’ve become obsessed with pizza lately, but only take out not store bought. Isn’t that weird? I was at my cottage last weekend and convinced my parents to drive into the closest town to get a pizza to satisfy my craving. It did, and I haven’t wanted it since but now talking about it, I could go for it again. How strange that our taste buds / food cravings or aversions are becoming so strong, isn’t it? Did you doctor comment on this at all with starting the OFEV? I don’t remember mine doing that…

        Ahh so sorry to hear about your function numbers declining. I know this is always hard news to digest, especially on top of dealing with a fever too! Any news on the fever yet? It doesn’t sound like you’re on oxygen at all yet, right? It is a significant change, I completely agree! I had many tears about having to wear oxygen beyond just at nighttime. I actually posted a video from another young adult about how it takes confidence to wear oxygen in public. It is a very big adjustment, so please be gentle with yourself in terms of accepting the oxygen. We know it helps us, but doesn’t mean it makes it easier. I’m happy to share more of my experience with this if you need, just reach out anytime. You know how to reach me 🙂

        Hope you’re doing alright otherwise. Things here are okay, just plugging along… I’ll be happy to welcome cooler, autumn weather as I’m about done with the heat and humidity making it harder to breathe.

        Thanks as always writing. Connect anytime!
        Hugs,
        Charlene.

    • #14198
      Margaret Zamanian
      Participant

      A friend told me about the O2VIBE wrist monitor.  They are pricey but Costco has them for about $147.  I  had good readings and tested it against a night oximeter test I had. It matched readings  quite well.  I was never tested for night saturation’s. I showed a few nigh readings to my pulmonologist and he ordered the night test. I qualified for oxygen during sleep.  It is my hope that using O2 at night will prevent needing it during the daytime. I am always borderline on the 6-minutes walk. My Dr. ordered another round of Pulm. Rehab.  I have radiation pneumonitis, almost gone but left fibrotic scars, and restrictive lung disease.

      • #14211

        Hi Margaret,

        Thanks so much for sharing this information, and welcome again to the PF forums 🙂

        That is really good news about this wrist monitor matching your oximeter. If it is effective, and reliable then I think $147 isn’t too bad and could be considered an investment in your health I suppose, right? I hope your night test goes well also and that if you do use supplemental oxygen at night, it helps sustain you through the day. This is how I started with 02 as well (just nighttime) but have since had to use it almost 24/7 now. Did you find your first round of pulmonary rehab was helpful? Mine was for sure, and I’m looking forward to doing another round also.

        Thanks for sharing a bit about yourself, and about the O2VIBE wrist monitor. I’m sure others will find this information useful too!
        Charlene.

    • #14214

      I ordered one from veterens.com I believe it was. I paid $70 for mine. It does all the vitals, times sleep, steps, etc. All of my vitals match almost perfectly except the O2 monitor, which was what I really wanted to work. I kept  mine as it does my steps and everything else works perfectly. I will check into the one from Costco though. Might be worth the investment. Thanks for the information everyone!

      • #14226

        Thanks for your reply Michelle and letting us know about your experience with the device you purchased! I also use a Fitbit on my arm to track my calories burned, steps, sleep etc and I find this pretty effective, although I’d love it that much more if it could properly track my o2 saturations. If you do try out the one from Costco and like it, please report back and let me know. I am certainly intrigued now too!

        Cheers,
        Charlene.

    • #14215
      paula
      Participant

      Morning Charlene

      I am just now entering the 3rd month on the OFEV it was in the same time frame that I started having issues with the Esbriet, so fingers crossed that does not repeat itself.

      Fever is still there by mid afternoon. No results yet from the blood work which was done on Wed. The respiratory nurse did contact my doctor who had to leave the country on an emergency, so one of the other doctors took the call. From what I was told he is waiting to see the blood work before any thing will be done. I was told if I did not hear from them by this afternoon to call them.

      We went grocery shopping this morning and I was picking up some cookies that I like. Well as I said to my husband, I think I still like them. (shaking my head). Its very frustrating to all the sudden not like foods that I once liked. The one that has all of my friends scratching their heads is the issue of cheese burgers. Can’t eat those any more. I love cheese. Eat it during the day. No problem with eating grilled cheese but I can not tolerate it on a hamburger. The mere thought makes my stomach goes nuts. Grandkids will be here tonight, they and my husband will have pizza I will have a salad.

      While I am not crazy about needing oxygen at night time, I am hoping it will boost my energy. It does not take much to make me so tired. When the time comes that I need it all the time, its going to take time to adjust and I am quite sure I will have a pity party.

      Well got to run. I see others have found various places to get those wrist monitors. Some with good results some while good did not give them the information regarding the O2. Maybe some day they will come up with something that can accurately read the levels using such bands. Until then its the finger thing for me.

      Paula

      • #14227

        Hi Paula,

        Thanks for your reply in getting back in touch. I’ll also keep my fingers crossed for you that the 3rd month of OFEV goes better for you than Esbriet did, and that no allergic reaction occurs!

        I guess it makes sense that they want to wait to see what the bloodwork says before proceeding with any treatment options for this recurring fever. Did they give you any indication of what they were looking for in the bloodwork at all? I’m glad they’re checking it out for you though as that is quite unusual to have it so long and during a certain time frame, ie. by mid-afternoon. Did you hear anything back or did you end up calling them the other day?

        I do find sudden food aversions very interesting as well, I agree! I either am on one end of the other of wanting something, but have experienced something similar to you in terms of not wanting something I used to love. Strange that you still enjoy cheese, but not paired with a hamburger. Did you end up liking the cookies you used to enjoy?

        Have you started the oxygen at night yet? Let me know when you do and if you find any improvement to your energy levels. I hope it gives you a boost at nighttime as well Paula! I am with you re: the oximeter, although I have to say the Costco one has me a bit intrigued. However, I am going to wait first to see if anyone else shares their experience with it as it is a bit of an investment.

        Anything fun planned for the weekend? It is a long one here for us so I am looking forward to spending (likely the last one this summer) it at my cottage with family and friends.

        Take care and as always, thanks for getting in touch!
        Charlene.

    • #14231
      Margaret Zamanian
      Participant

      Regarding pulmonary rehab, I found it very helpful.  I didn’t increase my exhalation volume but that was to be expected. I did feel better after each class.  I am now in a rehab at a location closer to me and I am doing up to 9 minutes on the treadmill at a slow slow pace for now.  I was encouraged to get a few dumbbells and bands to workout at home. The best time would be after the vest and nebulizer therapy.  It gets hard to find time later in the day.

      Regarding the O2 VIBE wrist monitor by Bodimetrics.  When I know I will be busy with chores I wear it, except when near water. I forgot to mention that I sync  it on the O2VIBE app each morning. It automatically syncs once you remove the finger reader, once your settings are set up.  Each time period is a chart with heart and O2 readings in graph form. Reading averages are at the top, including number of drops and the lowest one, averages too. I can email the chart to myself to keep or email to a Dr. if questions arise. I find easier to keep track of readings  over a certain period of time, line between Dr. visits.

      Takr care.

      • #14257

        Hi Margaret,

        Thanks for your reply, and I hope this note finds you having a wonderful weekend!

        Glad you found pulmonary rehab helpful, I did as well and am eager to start another round of it shortly. I simply felt like it made my whole body a bit stronger, and definitely my lung capacity felt like it was improved even if that was short-lived. Kudos to you for also exercising at home, that is excellent and I know it is easier said than done.

        I’ll take a look at the o2 VIBE app and reviews online. Like I mentioned, I don’t think that price is unreasonable for a device that works, and one that can effectively read your sats especially when you’re out. I like that you can email the charts / reports to yourself and the doctor too – that is an interesting feature! Thanks for writing, and I hope you’re doing well. Enjoy your long weekend!

        Cheers,
        Charlene.

    • #14240
      paula
      Participant

      Hi Charlene

      My doctor is out of the country for a few weeks. The doctor who finally called me on Friday to say the least pissed me off.
      He said my liver test was good and they found nothing in the blood work that raised any concerns. When I brought up what the pulmonary function test showed he said my numbers were not low enough and they really do not use that as an indicator to put someone on oxygen. I was floored.

      I wanted to say to him “So what is your indicator? When someone passes out and their lips are blue?”

      There is no way the nurse (whom I was surprised even told me what she did. Usually they say nothing to you leaving it up to the doctor) would have called the doctors office directly that day instead of just sending the report if it was not a concern to her.

      I told my husband that while I have full intent to say something to my doctor when I see him on the 18th, its possible that none of the doctors there will ok something like putting someone on meds or oxygen for another doctors patient. I know a year and a half ago when I had problems, one of the other doctors had asked if my doctor had talked about putting me on something like Esbriet. He then said he would treat me for what was going on at that time and would leave the other stuff for my doctor to decide when he would do it. I get that. But quite frankly the doctors attitude yesterday was dismissive and offensive to me.

      Just another day in paradise.

      • #14258

        Hi Paula,

        Thanks for getting back to me, and I hope your weekend has improved. So sorry to hear about your experience with the doctor on Friday. It drives me nuts when my conversation with doctors ends poorly, and then I am left feeling pissed off or frustrated. Sadly, it happens more than I’d like and I’m sorry it happened to you that day he called.

        I would also like to know what they use as an indicator for supplemental oxygen then, because function tests and saturations is what I always thought they used. Plus, that just makes sense. Yes, that would have infuriated me as well. Plus, wasn’t it your doctor who suggested it in the first place? I get that he might want to wait for your doctor to return and decide, but he could have voiced that to you as opposed to dismissing your concerns when you brought up your PFT results. Really sorry that happened to you, how frustrating!

        Hang in there Paula, I sure hope your weekend has improved <3

        Charlene.

    • #14241
      paula
      Participant

      Margaret I am going to start documenting my sat levels and bring them to the doctor. Since I do not have the type of phone that I can do apps on, what you have would never work for me. Did I read correctly that you place something on your finger to get the O2 sat rating that will be forwarded to your app?

    • #14242
      Margaret Zamanian
      Participant

      Hi Paula,

      The wrist monitor has an attachment that fits on the finger when you want to monitor your O2.  The readings are recorded and transferred to an app after you remove the finger thing and open the app in the phone or iPad.  It is a great way to have a dated graphic reading for your heart and O2.  I once  made a log to show my then PA that I was concerned about my O2 drops. It went pretty much unnoticed. My 6-minute walk tests were borderline.  By showing a few of the daily charts, my now pulmonologist listened…

    • #14243
      Margaret Zamanian
      Participant

      Paula, the O2Vibe is also a step counter when the finger extension is removed.

    • #14244
      paula
      Participant

      Thanks Margaret. My concern now is when I did the pulmonary function test the nurse ran one of the tests twice because my number was so low. She said I needed to be on O2 at night time. She was so concerned that she called my doctor that day.

      But my doctor has been called away for a family emergency and one of the doctors whom I have never seen said the number was not low enough and they do not use that as a gauge to put someone on O2. I almost asked him if his criteria was met when the person’s lips turned blue and they passed out.

      I know in the past the other doctors at the office will deal with issues that are going on but if it calls for a long standing treatment they leave it up to the patients doctor. While that may have been the case with that jackass yesterday, he could have worded it differently instead of basically blowing me off.

    • #14259

      Hey Paula,

      I think it is a really good idea to start tracking your saturations, even with your oximeter. You could do it at different times throughout the day, and different activity levels as well ie. during exertion (like stairs), sitting still, cooking, etc. and just track it either as a word doc on your computer or in chart form in a notebook. I did this for awhile before the doctors really figured out what was going on and I received my diagnosis. It did help a bit!

      Goodluck 🙂
      Charlene.

    • #14263
      paula
      Participant

      uHi Charlene
      Nice weekend. Block party in the new neighborhood. We moved into a really great area.

      Yes I was pissed at the doctor who called and he probably is deferring the topic of oxygen until my doctor gets back but as you said he could have addressed the issue better. I know when I had to deal with one of the other doctors he told me he would treat what was going on and leave the long term issues to my doctor.

      I started keeping a log of my levels. stating what I was doing prior to taking the reading. The start time level and the end time level. I have seen my number go as low as 76 after going up a flight of stairs.

      I rebound quickly but as my daughter said, how long will I be able to continue that. Good question.

      I was also talking to a lady who is waiting on a kidney transplant and I was talking about my elevated temp that has been going on for 2 weeks and always seem to start in the later part of the day. She said it was from fluid build up where my system is not working correctly. Not sure how true that might be but an interesting idea.

      It was funny as I was talking to this woman who was over at my daughters (I was bringing my granddaughter home), I was looking at my hands and said it was a good thing that I was not seeing my doctor that day. As soon as I said it, the woman and my daughters mother in law go :OMG look at your fingers tips, they’re blue”. I laughed and said not to worry it was the dye from the kids doing tie dying t shirts the night before and I had to wash them that morning.

      Speaking of skin. my daughter was looking at my arms and commented on how they look like what you would see on the elderly. Thin, very wrinkly. Almost looks dehydrated but I am not dehydrated. She is blaming it on the blood not having enough oxygen. Just another thing to talk about to the doctor in two weeks.

      Sounds like you had a nice vacation. So happy that you were able to do that. You are too young to be dealing with what your dealing with so it is very nice to read about your being able to enjoy some stuff.

      Paula

      • #14297

        Hi Paula,

        Thanks for getting back to me, and I hope you’re having a nice start to the week!

        That is really great news that you moved into such a great neighbourhood. A block party sounds so fun! Actually, one of my friends studied Community Development and is a Neighbourhood Connector in her current role so she focuses on just how much being part of a community/neighbourhood can reduce social isolation and feelings of loneliness for people. It is so important, and her highlighting this for me has given me a new appreciation for wanting to be part of an active neighbourhood. Anyway, I digress but I am so glad you enjoyed the block party!

        When will your doctor come back to address the oxygen issue? 76 is really low to have your oxygen levels dip too and even if they recover, my worry is how under-oxygenated your other organs might be. I am glad you’re tracking it though, this will definitely help when you do meet with your primary care doctor.

        Interesting as well re: the fluid imbalance potentially causing the fever. I never would have thought about that, but I guess it makes sense. Did she provide any suggestions on how you can deal with it? That made me chuckle, that the “blue” fingertips were due to die with the kids! Glad it wasn’t because of chronic under-oxygenation!

        Let me know what the doctor says re: the skin. I haven’t experienced that, but definitely a good thing to talk to the doctor about.

        Thanks for your kind words too regarding my vacation. I am pretty excited to post some pictures and share my experience of my trip to the east coast of Canada (Cape Breton) next week. It is beautiful there, and I am counting down the hours until I leave! 🙂

        Take care and chat soon,
        Charlene.

    • #14306
      Terry Moriarty
      Participant

      Hi Paula,

      My understanding, in the US atleast, is that the insurance companies require a 6 minute walk to qualify for oxygen. Your oxygen level has to drop below 88. Then they do it again at 2 liters per minute to see if you drop below 88. If you don’t, they keep upping the lpm until you stay above 88. That’s your prescription.

      I don’t think your PFT results factor in, but I could be wrong.

      The 2 times I landed in the hospital, my blood oxygen was observed by the doctors at 73. Sent straight to the hospital. First in 2007, second time was in 2011, which is when I went on oxygen 24/7. The prednisone is what brought my oxygen level up both times.

      Do you have any idea when your doctor is getting back? If your oxygen level is that low, maybe you should go to the emergency room. Just a thought.

      • #14319

        Hi Terry,

        That is interesting – thanks for sharing! I actually didn’t know how they calculated the prescription for your supplemental oxygen, but have done the 6 minute walk test multiple times so this makes sense. They’ve also made me do it (I hate it!) during monitoring tests as well, to see if my 02 needs have changed so this is really interesting information for me.

        I hope Paula’s doctor gets back soon too, just to do an assessment and make sure her other organs aren’t being compromised by such a low 02 sat. Hopefully she continues to recover quickly and feel alright 🙂

        Thanks for writing, hope you’re doing as well as possible also!

        Charlene.

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