Pulmonary Fibrosis News Forums › Forums › Healthcare Questions › Diagnosis Information and General Questions › Oxygen Questions
MemberApril 6, 2020 at 8:42 am
Kristin, I can only speak to your question about the nasal canulas. There are what are deemed “high flow” canulas and tubing. Mine are a green color and your provider should be able to get those for you and your mom. Be sure you ask for those.
As for your really horrible pulmonologist, I hate to say it, but I would be searching for someone else to care for your mom. I know in a lot of cases our choices are limited. I have that same situation where I live. Without traveling a considerable distance, I am stuck with the one who is here. However, it might very well be worth looking into. No doctor should be allowed to treat the caregiver or patient as an “imbecile” when you are just looking for answers. That is, after all, what you are paying them for! I wish you good luck in your quest for help with your other questions as well as a better situation for your mom. Karen
MemberApril 6, 2020 at 10:31 am
Regarding learning about the many ways the oxygen in usa:
1.) I learned a lot at pulmonary rehab. Medicare pays for a very few hours. My provider runs about 10 patients at a time with 5 different 15 minute routines. 1-Treadmill, 2-NuStep, 3-Kazoo(Amazon Adurance Breathing Exercise Device), 4-Hand bike(Ebay – Mini Pedal Exerciser Cycle Bike Leg Arm Desk w/LCD Display Fitness Home Exercise), 5-Stationary Bicycle.
2.) Respirtech Vest (Medicare pays for treating specific disease)
3.) Lung transplant is available to older healthy people with pulmonary fibrosis. I have yet to pass the transplant evaluation. the process has taken a year and is very informative.
4.) proper breathing -1.) Diaphragm is better 2.) pursed lips exhale to increase pressure in lungs to open collapsed/congested alvioli
5.) Interactions with other patients is very informative. There are groups like AA for lung patients.
6. There are many Medicare cost restrictions regarding needed treatments, e.g. I can get a portable and a stationary electric oxygen concentrators. I must pay for any backup tanks. This is important when the electric power is out.
MemberApril 6, 2020 at 12:21 pm
Thank you both!
Lots of information… Bill, #6 – that is a huge concern of mine… if the power goes out, and I just purchased a backup generator that should cover mom’s two concentrators. As it stands, her poc goes to 6 pulse, and that’s just not enough. She has no tanks available.
Looking for a support group in Massachusetts on the Internet… if anyone knows of a good one, kindly let me know?
And thanks for the suggestions from rehab!
Mom is currently using a Y connector with two 7′ green tubes (Salter 1227-7-7), a green 25′ extension, and a clear nasal cannula… QUESTION: is the clear nasal cannula restricting oxygen flow? If it is, mom might not need to run two concentrators. Would you happen to know the make and model number of your cannula? I’m just going to order it… it would take an eternity on the phone fighting to get mom a cannula from her oxygen provider. I’m going to send you a message with my phone number… please feel free to call me anytime. I’d love to compare notes with you!
MemberApril 7, 2020 at 10:32 am
Kristin where do you live in MA? I am on the Cape. My pulmonologist is at BID but, with his recommendation, I have been tested 2X for transplant at MGH and am currently listed. Everyone I have dealt with at MGH has been great but I haven’t dealt with everyone. Let me know if I can help. Reach out for Aliaa Barakat @ (617)412-0356 or [email protected]. you may fid her quite helpful, I hope.
MemberApril 7, 2020 at 5:02 pm
Thanks so much for writing and sharing with us the experiences you’ve had with pulmonary rehabilitation. I have also learnt a lot from my participation in those programs! Sounds like a very similar process in Canada as the USA, except our tanks are primarily covered by insurance and concentrators (portable ones) aren’t always. Interesting. Thanks for sharing your thoughts 🙂
MemberApril 9, 2020 at 12:28 am
Thanks for the reply.
Live in MetroWest, corner of 495 and the Pike. If you’re ever in the area, please lmk!
Beth Israel is a great hospital. Went there for a cardiac MRI – their tech is amazing, and doc’s spoke TO me, not DOWN to me.
MGH is a huge disappointment. My mom’s pcp prescribed nitrofurantoin, which almost killed her, and caused her fibrosis to really kick in. It has a side effect which clearly states ‘not to be given to people with fibrosis.’ Yeah…
Her pulmonologist in Cox, can’t be bothered with us… and try to obtain the necessary paperwork for supplemental oxygen out of pulmonary… never happen without pushing the lazy workers there.
We have been blatantly lied to in emergency room about my mom’s condition – told mom’s fibrosis has gotten ‘significantly worse,’ then all of a sudden it’s ‘stable!’ (The emergency room there is an absolute circus). I had one nice e/r nurse tell me to ‘get my mom out of there, or she will become more sick!’ Can you imagine?
Not a fan of MGH. I was… but not anymore.
I hope you have better luck there.
MemberApril 9, 2020 at 9:22 am
Kristin, strange things do happen. I have had great results at MGH never had trouble getting help or questions answered etc. I’m sorry your experience has been so poor. My pulmonologist is Dr. Zebrek at BID; just great. Sound like you’re in Westboro; I’m originally from Worcester. Stay well and keep your eye on Mom.?
MemberApril 9, 2020 at 3:32 pm
Quoting Bill Cusack:
4.) proper breathing -1.) Diaphragm is better 2.) pursed lips exhale to increase pressure in lungs to open collapsed/congested alvioli.
I found these techniques very helpful particularly PLip breathing. You can find the technique on the net.
If I am doing correctly I can see my o2 level go up in minutes.
MemberApril 14, 2020 at 10:14 am
What interesting info on oxygen being shared here. I’d like to add a couple of things, to help Katherine and Kristin and maybe others. My husband has had diagnosed IPF for 3 yr now (they now think it was there for several years earlier) and recently was using O2 on 5L only when he walked on treadmill. None walking to bath or sitting in chair. That was in early Feb. But on Feb 17 he had a massive GI bleed that led to exacerbation and I nearly lost him. Once that happened he immediately went to 8L but now 24/7. I brought him home on 2/23 and he seemed near death. We called in hospice on 2/27. They hooked him up to two concentrators with a Y tube connection, each is set at 4L as instructed by O2 provider. The first weekend, one of them failed (2 a.m.) and I quickly figured out I needed to establish a fast emergency connection to the large portable tank they gave us. It is is about 4 ft tall and holds about 8 hrs worth of oxygen at the rate of 8L. I now have a single connector and short tube hanging on the portable, so when a failure happened again, it only took me about 1 minute to switch from the double connector between the concentrators to the singe on the portable. Also easy to switch back when problem was resolved (overheating in the corner where the tanks were but now has more air flow). We also got a generator which uses regular gas or propane in case of power failure, which happens fairly often in our suburban area.
In the six weeks since he has gotten stronger and now can walk to and from the bath from our bed which is a walk of about 12 or so feet. He still has to have the O2 24/7 at the rate of 8L. The exertion of walking even with the O2 drops his oxygen to mid to high 60’s and it takes a couple of minutes for it to return to about 90 or 92. We also added a recliner to the room just 4 feet from the bed and he spends 2 to 4 hours in it each day watching the world spin through our patio doors. He has maintained this routine now for this time and I’m thrilled that he is even able to do this month. As to the question of how ‘long’ the exacerbation lasts, it is my understanding that the additional damage done to his lungs due to the GI bleed, will not heal. His lung function test in January was 51% but that was when he was only using O2 to exercise. Now it is much lower, but no way to know how much.
My question for anyone who may use levels of O2 this high, is what next? When Hospice was called in death seemed imminent and I praise God that he is stronger and more alert now, but what is next? Will he just be plateaued at this level or will he continue to require more O2 as time goes by? I admit to fatigue because he is 82 and I am 76 and getting up 3 to 8 times each night to help him to the bathroom (uncover, help with slippers, help onto walker, guide oxygen tubing along the way; then reverse) is exhausting. He never went potty during night before the exacerbation and now does often so something changed internally. I rest when I can next to him during day, (twin hospital beds make a great king sized bed) but there is frequent yo-yo-ing up and down to move this, find that, fill water, find the remote, fix meals, bathe and change clothes, do little housework here and there, etc. Hospice tech comes in 2 x week to bathe and shave and nurse comes in once a week now since he is doing better. I never thought ahead on what this final stage would be like but now that I’m in it, I seem to have a lot of questions. Is there anyone in the group who can give me guidance?
MemberApril 14, 2020 at 11:11 am
Hello Judi, sorry to hear about your husbands current condition. Many patients when they have an exacerbation do regain some of their lung function. I did but I didn’t regain all that I had lost. When your husband is evaluated by his pulmonologist the extent of the damage due to the exacerbation should be known. A suggestion for the nighttime bathroom visits; I used a hospital urinal for urine so I could keep my sleep from being disrupted. I have had a transplant and I still have a hard time staying asleep and it seems like the nighttime is the perfect time to urinate. So, I still use a hospital urinal. I ordered them on amazon. At least this will keep you in bed at night. Im sorry I can’t give you any advice on hospice or end of life care. I can say thank you for being a loving and caring wife. Your husband is a lucky man to have you by his side. Please take some rest for yourself and keep us updated. Best wishes, Mark.
MemberApril 14, 2020 at 12:19 pm
Thanks for sharing. Im 73 on o2 7×24. Maybe i missed something but just to be thorough – Many use tubing swivel connectors for low pressure to daisy chained cannulas to go 100+ feet from the concentrators. Inogen provides these with the cannulas.
MemberApril 14, 2020 at 12:24 pm
You are I are living the exact same lives, and it would be wonderful to compare notes. My mom recently went through a ‘flare’ and is still having issues.
Would it be possible to chat with you on the phone? I’ll send you a friend request, if you accept, I’ll send along my phone number…
MemberApril 14, 2020 at 12:43 pm
Hello Bill, for a home concentrator it is not acceptable for your tubing to exceed 50ft. The oxygen pressure will severely decrease if the tubing is over 50 ft. For an inogen pulse concentrator the length, the suggested length is about 10 ft or shorter. Mark
MemberApril 15, 2020 at 3:49 pm
I was prescribed an InogenOne G5 about ten days ago with an initial setting of 2 0n the device. The G5 is portable and I thought that it would likely provide enough oxygen to keep my SPO2% above 90% while walking at an average clip, for about thirty minutes. It turns out that my expectation seems to be wrong as my SPO2% drops into the low 80’s. Usually my recovery % after walking for this amount of time is 93-94% and takes about 7-8 minutes. I’m tempted to move up to the next setting(s) of 3 or 4. My sitting % rate is 94-95% at about 94-95 bpm on the heart rate. The InogenOne G5 handbook (down loaded from the internet) is not very helpful.
MemberApril 15, 2020 at 6:01 pm
Ross, crank it up; there’s no such thing as too much O2 so find the setting that meets your requirements. I use the Inogen 3 (4 years) and I have it set to the max, 4. The biggest problem will be battery time; the higher the rate the more power will be needed. Good luck and stay well!
MemberApril 15, 2020 at 6:14 pm
Spot on advice,
MemberApril 15, 2020 at 6:15 pm
Normally pulmonologists prescribe a quantity of oxygen per minute. Very commonly they initially prescribe 2 liters/minute. I looked up the G5 and it says “settings: 1 to 6”. These numbers are NOT liters/minute. The user manual of most machines tells you the value. I don’t know if inogen mentions it. If it does I couldn’t find it. As far as I can see the G5 only provides pulse oxygen ie a pulse or bolus when it detects your inhalation. Is this ok with your doctor? Mine told me I must have continuous flow for sleeping.
The gold standard is that your O level must not drop below 89% (some doctors say 90%). If it does you must increase the O flow until it goes back up. With pulse flow you must be sure that you are inhaling – easy to forget. Inogen machines are very small compared with the POCs that certainly provide 2 or 3 liters/min continuous flow. Salesmen have told me that a setting of 6 on an Inogen is the equivalent of 6 liters/min. Common sense tells me that this is untrue.
You can find comparisons on the net for all POCs. Believe nothing unless it’s in writing. POCs are highly profitable, there is a huge mark-up. Caveat emptor.
When you look at comparisons BEWARE if it is a commercial. Many companies have fake reviews showing only what they sell. If you Google POCs you will get a full page of ads. Followed by many that are disguised ads.
As far as I know there are no POCs anywhere in the world that provide more that 3 liters/min and a few more that can provide 2L/min.
From the manual of a true 3L/min machine a table showing bolus volumes for pulse shows that at a setting of 6 the machine will provide 96mL per pulse at 20 breaths per min. (ie about 2L/min)
I know this is confusing but the bottom line is get your O level up to where your doctor says it should be. If your present machine won’t do that you need a better one or a different system. This happened to me when I was first on O and tried exercising. (I needed 4L/Min to maintain 90% O saturation.)
If I can answer any other questions I will. Good luck.
Here is a good comparison of continuous flow POCs. Everything is a trade off: weight, battery life, ease of use, battery cost and price, FAA endorsement etc. https://www.vitalitymedical.com/guides/respiratory-therapy/ranking-portable-oxygen-concentrators-with-continuous-pulse-flow
MemberApril 16, 2020 at 8:11 am
I know that pulse and continuous O2 are nowhere near the same thing, but I disagree that there is “no such thing as too much O2.” I do believe that I have read that it can be dangerous to have too high a level being delivered. Just to be safe, I would strongly suggest you check with your pulmonologist. Depending on your personal diagnosis, there could be other things to consider in determining just how much O2 a person requires. Karen
MemberApril 16, 2020 at 10:51 am
Thanks to Robert, Bill & Karen for the very helpful comments and advice. I have a call in to my pulmonologist and I am prepared to ‘crank it up’ to the point where I get the oxygen I need. Ross
MemberApril 16, 2020 at 5:54 pm
I do not believe a pulse POC can overdose you with O. I don’t believe any doctor is going to tell you to continue any activity that is causing hypoxemia.
MemberApril 17, 2020 at 12:28 am
I tend to agree with Karen. I’ve been having all sorts of weird symptoms, both at the high and low ends of saturation. My respiratory nurse believes some of the symptoms relate to too much oxygen with resulting hypercapnia/hypercarbia. When I looked it up, the articles say people with PF/IPF can get this. I believe it’s more common with COPD and CF, but is possible for us as well. The symptoms I particularly believe to be caused by Co2 retention in my case are increased number of headaches, red nose/cheeks, chest pains and a feeling of pressure and “doom” (only word I can think of to describe it) at the base of my throat/breastbone – at times I’ve thought I’m having a heart attack; other times I’ve thought it was a really bad reflux attack.
Because of this, I’ve recently had a series of chest/heart imaging done. Still waiting for results of a CT contrast angiogram, but the HRCT of chest found ‘severe’ fibrosis (as opposed to the prior 2017 scan that was still ‘mildly progressive’) and the echocardiogram found no significant heart issues but did identify pulmonary hypertension. Meanwhile, I’ve also been experimenting with reducing my oxygen levels depending on saturation and removing the cannula if I find myself above 95%.
MemberApril 17, 2020 at 8:52 am
Jill T, thanks for chiming in with your experience. I didn’t think I was imagining having heard about there being adverse effects of too much oxygen. I recall we discussed it some at a Better Breathers group meeting. I don’t recall if it affects mostly people with COPD, but you are probably right about that. Guess I am just old-school enough that I don’t like to play with things I don’t know much about without guidance from the “experts.” As I said earlier, I know pulse and continuous flow are very different, but you still need to know all the facts. I wish you good luck with managing your situation. Take care. Karen
MemberApril 17, 2020 at 11:49 am
Let me bring up an oxygen topic that hasn’t been mentioned but is critically important.
If you in the US and on Medicare the initial decision you and your doctor make on what method you use is unchangeable after a short initial period. You are stuck for 5 years with the provider and the what form of oxygen and what machine you get. I don’t know if this is the same if you are less than 65, in another country, or on Medicaid
I’m sorry I forget how long that period is.
If you are active eg playing tennis or table-tennis you may need liquid oxygen to do this. If you need continuous flow for any vigorous activities ask if you can get LOX. You can put the cylinder in a backpack and depending on your needs it will last longer than any other portable method. You can do the same with gaseous oxygen but it won’t last nearly as long and you’ll have to carry spare cylinders with you. I went through all of this when I was 1st on O. I’ve tried everything and LOX is far and away the best system if you can get it.
I believe there is a video on the PF Foundation website laying out all the methods.
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