John M
Forum Replies Created
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I forgot to check the reply Box. Can someone fix that for me so I can know if someone replies to my post. Tks John
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I was diagnosed with ILD in spring of 2011 and started on Cell Cept 1000 mg twice a day. I have had Rheumatoid Arthritis since 1987 and was on Methotrexate and Enbrel for a number of years. These two drugs were a game changer for me as I was able to play golf, ski and lead a pretty normal life. When the IPF diagnosis came I was taken off Methotrexate. My RA continued to remain stable and my PFT’s weren’t too bad. DLCO’s in the low 20s. Gradually, my DLCOs started to drop into the high teens and finally to 10.7 in Nov 2019. My Dr. had prescribed 2L OX2 but I didn’t fill that RX at that time. A month later, I was admitted to the hospital with they think was PCP Pneumonia. (Not sure as I guess it is hard to tell without biopsy and they didn’t want to do that). After 11 days of high flow O2, I came home. It was at this time that I started using 2L O2 at night. Three months later I again had trouble breathing and went to the ER. Primarily because of the Covid hysteria they immediately put me in the hospital but this time in Isolation. After 5 days of waiting for the Covid test results, I was released with diagnosis of Rhinovirus. My May 2020 PFT showed a decline in DLCO 9.7
Luckily for me, the approval for the use of OFEV to treat RA-induced IPF came about in March and I was started on OFEV 150mg twice a day. For the first couple of months no symptoms but gradually I stated experiencing continuous diarrhea. To combat that, I started taking Imodium which helped but then caused me to sometimes have constipation. I tried combating that with Senocote which really confused my digestive system and made me miserable and bloated most of the time. This when I read on this forum that some people stop for a few days to get things back to normal. I have done that twice in the last few months (with Dr approval) and it has reset my system quite well. The reset seems to last about 2-3 months till things get out of balance again. My last PFT in July showed a 10% improvement so I don’t want stop or reduce the OFEV, at least now right away. Sorry for the long post but thought it necessary to give my background to anyone looking to analyze my experience with OFEV. John
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John, when you say 86 walking ,what does the pulse setting of 5 bring it up to? Your info is very helpful to me as is seems that you and I are fairly close in O2 requirements. Are you on Ofev or Esbriet for your lungs? Also, where did you read about the battery issue with the G5? That could be factor in which one I chose.
You make a good point about the concentrator not filtering out any viruses. I wonder if there has been a study done to see if it can be modified to do that. Actually, I think for most of us, any viruses could be problematic for our lung function. Last year, I had a bad chest infection and they thought it might be Covid but after 5 days in isolation, they determined it was just a common Rhinovirus. Of couse to us that can be almost as bad as Covid. John M
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Thanks so much Judy. I think I am going to try the G5 if they have extra batteries. Don’t know if you saw the post from John Styles but he says they aren’t selling individual batteries except with the G5 That would be an issue.
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John S, what is your normal at rest sats? Trying to compare my situation to yours. I too, would like to go to Europe but have to find something that will get me there. John M
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Jim, I appreciate your observation but I’m not sure if that’s necessarily true in my case, anyway. If you have been following Judy Fraser, the new G5 seems to be working for her. I am hoping that the minimal bolus that is given as a perfectly timed dose will meet my O2 needs at the present time. With constant flow, one has no idea how much oxygen that they are consuming on a setting of 2 continuous. What percentage of that 2L one actually inhales into their lungs on that one breath I don’t know. I’m trying to find out as best I can but maybe the only solution is for me to buy one and try it. I currently have a smll tank setup which has a pulse setting feature from 1-6? and continuous 1-2L. However, the pulse is not automatic or scheduled to your inhalation rate, but rather you have to actuate it by inhaling rather hard for it to function. I end up snorting my breaths instead of a natural inhale. I am also a shallow breather/mouth breather and I find myself not actuating the regulator some of the time. I’m hoping the new technology with improve the pulse function to the point it will work for some of us at least for a while. i have 11 grandchildren in Ohio and I need to have a way of getting back and forth easily and cheaply. Tks John M
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Thanks so much for your info Judy. Do have feel for where you were at sats wise when you flew and didn’t need to use O2. By that I mean how were you doing, sats wise, at rest and walking at that time? I’m really surprised you didn’t need O2 while you were in the air. As I mentioned in my earlier post, mine really dropped once we got to altitude (85-87) and when walking to the RR it plummeted to the 70s. I am really encouraged by your reporting that the pulse bolus is working out wonderful for you. What was it about the G3 that wasn’t working for you? Not a high enough bolus or was the sensitivity of the equipment not enough to trigger a burst for your respiration rate? Much appreciate the info. John M
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Judy, I take it from your posts that you haven’t flown with the G5 yet. So, which model did use use to fly and what were your experiences with it as to O2 sats, etc. Did you test it without the O2 on and then after moving about the cabin? What settings did you use? If it worked for you why are you switching to the G5? Apologize for all the questions but just trying to find what might work for me. Tks John M
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Bill S, thanks for your question. My at rest at home is around 95 +or – 1. As Bill K mentioned, all commercial a/c cabins will maintain a cabin altitude of 6-8000′ regardless of how high above that altitude the plane is flying. If it should increase above 10000′, the oxygen masks in the overhead will deploy for the passengers use. That is what the attendants are telling everyone as you are taxiing out to take off.
As for any recommendations, I recommend that you go with the advise of your DR/PA as they will better know your situation and needs. From what you have said I would “guess” that you would have no problem but that’s just me guessing and that’s why I too am on this forum trying to find some answers. Tks John M
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Thanks Judy, that really helps me get a good idea of where I might be with a G5. Like you when I’m sitting around my sats are 95 but when walking more than a few feet my sats drop to the mid to low 80s. It sounds like it will work for you flying on an airplane and with minimal exertion. I would guess that it will work for me as well. The only conundrum for me is should I get the G5 or get the Simply Go which will give me the best of both worlds with 5 Pulse and 2 Continuous. Just for air travel, the extra 5 lbs doesn’t really matter as you can use a cart to get it on the plane, etc. Thanks for your insight and please let me know if you get to use it in the air. Tks John M
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Tks Bill for the warning. I get what you are saying and I too believe there is too much BS and hyperbole surrounding these portable systems. However, we want to be mobile and somehow we need to find out what machine will meet our needs currently. As I mentioned to Judy, her experiences, along with her data will maybe give someone with a similar profile, a good idea of what might work for them, also. Lord knows, the doctors aren’t going to take the time to test us on each machine and setting to see which will work for us in a given situation. Maybe, if we all share our experiences with each other, we can make our lives more enjoyable as we make this difficult journey. Tks again Bill for your concern. John M
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Judy, thanks for your response. This is exactly what I am trying to figure out before I buy a portable unit. Right now I have a portable tank which has a pulse setting up to 6. While riding a bike gently on level pavement, I drop to 87%. What I am hoping is that the new pulse units will do a better job of delivering the bonus and it will keep me above 90%.
For reference, if don’t mind me asking, what is your normal at rest sats without O2. Mine is 95 most of the time but drops immediately with exertion. Walking around without O2, I quickly drop to the low 80s after
50 ft or so of steady walking. Also, I have Lincare as my supplier and after my flying incident I mentioned above, they told me that with a couple of days notice they could have a home unit installed at the place I would be staying. FYI. John M -
That’s what I did but got “ no results” but when I used the search function at the the top, it worked as you describe. Tks John M
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Ben, I had a similar experience last year before getting my O2. Went on a 2 hr flt and as soon as we got to altitude (36000’) which is 8-10,000’ cabin alt I put my finger spox meter on and it read 85-87%. Worst thing was I was setting all the way in the first row of seats and because of COVID they closed the front restroom (head for you Navy folks) and when I had to go, I had to walk the entire length of the plane to use the bathroom. When I got there I was feeling dizzy and checked my stats and it was 72-77%. When I came out I immediately sat down in a vacant row seat that was available and right away an attendant said I had to go back to my assigned seat. I told her fine but first I need to catch my breath. After a few minutes I got back to the mid 80s and slowly returned to to my seat where I stayed in the 85-87% range for the rest of the flight. I still had to get back home in 10 days and I made sure I didn’t need to use the RR on this flt. Also my sats stayed around 88-90% the whole trip. Moral of the story is if you have O2 issues, don’t fly without supplemental O2. I didn’t want to be the one to cause the plane to make an emergency landing because I passed out.
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Charlene, When I use the search option at the top I get results as you indicated. But using the search box on the right side I get nothing. Hope this helps. John M
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Tks Charlene, I did try using the search function and got no replies. typed POC and next I put in Portable oxygen concentrators and got nothing. Not sure what I am doing wrong? I will try again with your suggestions.
I was hoping to hear from some who had purchased one and their experience ; i.e. maintenance, customer service, price, etc.
I am looking at the Simply Go as it has both pulse and constant flow for air travel. But as you point out it is very heavy to carry. Is there a pulse setting that you have found that gives you as much of a bolus on pulse as it does on constant 2?
Tks John M
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Tks Miriam, my concern is that the pulse dose will not be enough for me. I have the small tanks now and it has a regulator that has a pulse and constant settings. On 2 constant I can move about fairly well and stay above 90 spox if I take it easy. But on pulse 4 or 5 I drop to 87-89 with same exertion. I have read that the newer pulse units work better on delivering the bolus of O2 and I am wondering if that would help my situation. I am a mouth breather and also a shallow breather so maybe that will help. Anything you can relate to regarding my situation? Tks again John M