Living with Supplemental Oxygen

Lindsey, my HHCA oxygen delivery guy.

September 12, 2002

Revisions since April 18, 2002:

Added a reference to eBay, reportedly an alternate source for the Nonin 9500 oximeter, and spruced up a few other sections.

April 18, 2002

Revisions since July 6, 2001:

I finally found an online source for a personal fingertip oximeter, thanks to Bill Nagle, W3DUQ.  It's a company by the name of SCAN TECH, and you can access the webpage they have that shows the same (but probably an updated) model that I have and show below--a Healthdyne 950--albeit labelled with the Nonin 9500 ONYX name, by clicking here. They charge $395, but you can get it in black or yellow, which is a new and interesting change. They also sell a carrying pouch for it at a nominal cost. Aside from the obvious benefit of having your own oximeter so that you can properly monitor your oxygen saturation level and adjust your oxygen flow rate as necessary, this is an important development because Susan Ryan, my former source, who tried as best she could to fulfill the demand of patients that would contact her, had to finally give up acting as a go-between for a number of reasons. For her help up until now, I sincerely thank her. However, now there is a source that is a little more expensive but probably easier to reach.  NOTE: Please do not email me with questions about how they handle a prescription, etc., because I really don't know.  Contact Scan Tech and ask--I'm sure they'll be glad to answer your questions. Good luck.

P.S. I am not in any way affiliated with nor do I benefit financially from any association with Scan Tech or Nonin nor do I endorse either of them as a company. I offer them simply as a reference for patients in need of a personal oximeter, which I consider a mandatory survival tool for those with serious respiratory disease.

NEW NEWS--A patient emailed me recently to tell me that he recently bought a Nonin 9500 up on eBay for a decent price, so don't forget the world's largest garage sale--eBay.

July 6, 2001

Revisions since September 7, 1999:

Many, but I forgot to keep track. I know I've been back in this page since September, 1999, but I guess I just forgot to update the revision date. In any case, what I added at that indeterminate time, I am probably modifying now, so let's just roll it up into this change. Confused? Me, too. Forget I said anything about it.

September 7, 1999

Revisions since July 2, 1999:

I found a Polaroid picture Judy must have taken outside in the driveway of Lindsey--I hope I'm spelling that right--one of our main O2 delivery guys from HHCA. He was, in a lot of ways, my only real tie to the outside world during the worst part of my illness. To give you an idea, he made and lent me a tape of a fight that had been on Pay Per View so I could see it, and we both agreed the winner really lost the fight (I forget who it was). Lindsey's personality and strength of character kept me in the game and in the end, was really as much a part (or more) as anyone in saving my life. Many thanks to a true human being. And thanks again to all the drivers, customer service reps, and warehouse guys over at HHCA (see below).

Also, be advised that the Ayr saline-based nasal gel and spray products mentioned below are available through this link--drugstore.com, or from the logo at the top of the menu bar over on the left, or from the Search Box at the bottom of my homepage.

July 2, 1999

Revisions since June 3, 1999:

I found a source for the Pendant-Style Nasal Cannula (see below).

June 3, 1999

Welcome to my Living with Supplemental Oxygen page. If you use oxygen or will need to use it soon, this information will help you to anticipate some of the little things that will make it a lot easier. I've been meaning to do this for a while, but I guess the thought of reliving my experience with this subject kept me from addressing it until now. I know how important it is, however, and I remember how much difficulty I had, finally having to virtually design and/or invent much of it myself to stay alive long enough to be transplanted. This is the reality of having IPF, and nobody tells you anything about it. Until now--here we go.

Get a Good Oxygen Supply Company

No kidding, huh? An obvious one, right? Unfortunately, it's not so easy to do, and not until you are well into the reality of full-time oxygen usage, will you be able to tell if the company you chose is up to the task or not. There is a lot involved. How are the drivers? How reliable are they? What do they know about the equipment, and can they fix and/or replace a broken or leaking regulator? How responsive is Customer Service? How many tanks do they have and how do they handle holidays? Do their Respiratory Technicians ever come out and assess your situation? Do they back up their commitments? Can they put them in writing? How many people in their organization can actually fill the tanks, or is the one guy they have not all that prone to coming in to work all the time? Think I'm kidding? Think again. My advice? Do as well as you can initally in picking a supplier, and then work with them--you'll end up teaching them how to handle your situation, because I can absolutely guarantee that they've never had a customer like you! In fact, you'll rewrite medical technology for them, as they'll argue all day that "100% is 100%", and that something like 12-15 LPM is the maximum you can handle. Do not accept this malarky--you will know from your Oximeter--keep reading--how much oxygen you need. And if you are as needy as I was, you'll be their single largest account within six months--but let's not get into that right now. I used HHCA, also known as Home Health Corporation of America (my local branch was in King of Prussia, PA), but they have centers all around the East Coast. The number I have for their corporate office is 800-872-5230. For all the problems I had with them from time to time, their drivers and staff saved my bacon--pure and simple. To Lindsey, Leo, and the rest--Thanks!

UPDATE--These guys seem to have gone away, as may oxygen companies have in the last few years. Apparently, the oxygen provider landscape is a little rough these days.

Here's a big tip, but don't tell them I told you about it. If you are on any kind of decent medical insurance, you can most likely negotiate for what is commonly called "waiving the patient share". As Medicare pays something like 40% of the real bill and they have to take it, and your insurance at worst pays probably 80%, if you threaten to go elsewhere if they don't waive your share (we're talking 20% here), they'll most likely roll over and do it. Seriously--everything is negotiable. This is an enormous help, financially, for number of reasons I won't get into here (can you say satisfy your cap?). Thanks to Jane at my Pulmonologist's office for this tip. Oh, I almost forgot--GET IT IN WRITING!

Get Real Oxygen, not a Concentrator!

This may not be so obvious, and it sure looks a lot easier than running tanks in and out of your house all the time, but I tried one and you can just forget it. A Concentrator essentially extracts the existing oxygen from the air in the room and concentrates it so that it comes out something like 90% pure, or so they claim. The main problem for IPF patients, in my opinion, is that you need 100% pure oxygen--we're not talking emphysema, here. I understand that some countries with  socialized medicine use Concentrators most of the time that they supply oxygen to their patients, but if that describes your situation, do all you can to convince them you need REAL OXYGEN!

As an example of how intensive the actual need for oxygen can get, and why a Concentrator won't cut it is that for months prior to my transplant, I had an E-tank in every bathroom, a couple of M-60 tanks at bedside, a couple more in the TV room, an E-tank or an M-60 at the top of the stairs, another at the bottom of the stairs, and one at the computer. And this is all IN ADDITION to the primary Liquid Oxygen system, consisting of FOUR 40-gallon tanks hooked up in parallel in the kitchen, to which I was attached with the ubiquitous 50-foot hose. This is Rocket Science--don't think it isn't! We're talking the essence of life here! Enough said.

What You Need--The Tools

OK, here is a list of essential items you will want to have--either beforehand or shortly after going on oxygen (full-time or even part-time).

1. Fingertip Oximeter--Healthdyne 950, Nonin 950, etc. You know about this, if you've read the story of My Transplant . This is a major item, and I just happen to have a picture of it, so you know what I'm talking about. It takes a couple of AAA batteries, which last for a month or so--you'll know you're really getting sick when you have to replace them every two weeks or so, as I was towards the end. It costs somewhere around $350. Some time ago, I received an email from a typical knuckle-headed techno-imbecile that wrote software under contract for a competing oximeter company that said that in his opinion these things aren't that accurate, and that the good one to get is a standard desktop unit. OK, jerk-off, here's the story--you have to be able to have this with you at all times. It tells you how saturated your blood is with oxygen, stupid, and that is a requirement for any movement, anywhere. This is important, moron, because your heart is your friend, and you cannot risk depriving it of oxygen and making it work any harder than it has to. So if it becomes a matter of resting until your saturation level returns to the 90's (hopefully), or just barging along and causing your heart to enlarge in the process, then in my humble opinion, you wait. If a point or two of inaccuracy is more important to you than saving your life, then yes, get an extremely expensive ($1000 and up), desktop AC-powered unit, or a similarly-priced battery-operated unit that is larger than a Thermos, for God's sake. Idiot. Sorry--I had to get that out, in case he reads this. The fact is, I often checked the calibration of my Healthdyne 950--and I had two over a year's time--against the Big Guys at rehab. They were never off more than two percentage points, and always in the safe direction--under-reporting my oxygen saturation, which is the error to have if you're trying to survive. Others have told me theirs are right on.

By the way, how do you get this? I got my first by asking my respiratory therapist at my oxygen company about it--I didn't know what there was out there, but I was talking to him about it, and he said, "Wait a minute..." He went out to his car and pulled one out of his glovebox--apparently they are often given away as comps by the big oxygen distributors to retailers and you might get lucky that way. Later on, when he asked for his back, I asked my Pulmonologist to write me a prescription, which he did, and I was able to get one through "channels", paid by my insurance company. Healthdyne has a website, or did, but they sell through dealers, so the best place to start is with your oxygen supplier or Pulmonologist and see what they say. I'll try to get more information about this--actually I want to be able to offer it over the Web, but that's down the road.

LATE BREAKING NEWS!! Now I have a NEW source for the Nonin Onyx (see above), which is the same as the unit shown above. Now you can obtain one online from SCAN TECH. To see the page on their website dedicated to it on their website, click here. PRICE CHANGE: $395 (up from $385). Also don't forget to check eBay for the Nonin 9500.

2. Fanny Pack--Never, never thought I'd use one of these, but I did, and I used it right up until I got transplanted, and haven't put it on since. I kept just about everything you'll read about on this page in it. It was my survival pack, pure and simple. Think of a war, and think of a backpack, with First Aid supplies, K-Rations, Gas Mask, and so on--it's just like that. Get it, wear it, and use it. Don't think about it.

3.  Oxygen Swivel Adapter--Here's a tough-to-get item that you HAVE to have. I, like many full-time oxygen users, was on a 50-foot hose connected between my nasal cannula (and then later my mask, but let's not get into that), and my oxygen supply. Like a telephone cord, the hose gets tangled up pretty easily if you move around much at all. But also like a telephone cord, you can get a swivel adapter that goes under your chin, between the cannula and the hose. The one I got is the Linjorel Oxygen Swivel Adapter, Model L92-02 (Male/Female), made by:

Afton Medical
2275 C Freed Way,
Pittsburg, CA 94565
voice: 707-237-9660 , 877-300-6288
email address: customerservice@aftonmedical.com
websites: www.aftonmedical.com , www.O2swivel.com

As far as I know, it's the only one out there. It's supposed to be available from your oxygen supplier, but if yours is like mine, they've never even heard of it. Your best bet is to contact Afton Medical directly and get some yourself. It wouldn't hurt to give them the name of your oxygen supplier and see if they can get a sale at the same time. You can't believe how handy this little thing is--it's your key to unfettered freedom about the house, if you can call being attached to a stationary bank of liquid oxygen tanks through a 50-foot hose freedom.

4. Saline Nasal Spray and Gel--Also shown in the picture above, this stuff is a miracle and like so many things, there is good and bad--the good is great, and the bad is worse than terrible. Forget Vaseline--I mean, throw it out. Ayr products by B. F. Ascher & Co., Inc., Lenexa, KS 66219, are the only ones to use--I told you I was a highly opinionated bastard. They make a Spray and a Gel. This gets a little gross, but here goes: if you, as I did, use a ton of oxygen, your nasal passages dry up, and you get major crusts, outcroppings, scabs, stalactites and stalagmites, etc., not to mention congestion, all of which block the flow of oxygen, which is not good. If, however, you coat your nasal passages with this gel, the situation can be ameliorated to some extent (but not eliminated), and if you get really blocked, repeated applications of the spray will dislodge the crustaceans, allowing you to expell them with repeated nose blows. You will not believe, however, how ugly and gross these thngs are when they finally exit stage left. It is not unlike giving birth through your nose, and I'm not kidding. I found that using a Q-Tip coated with gell and sticking it ALL THE WAY BACK into my nasal passage--like a side-show freak puts a nail into his head--was required to properly coat the interior and/or help dislodge the overhangs, etc. It takes a lot of work, but you have to keep up with it, so get all of this stuff you can. Our local drugstore carried it, so if yours doesn't ask them to get it, and if it does, buy up ALL they have and tell them to reorder more--trust me. I never went anywhere without most of the things I'm describing on this page, especially this stuff.

5. Ear Protectors--You know, the foam things you put over the loops that go over your ears so you don't have so much pain from the constant drag on your ears from the nasal cannula. These things are variable--the best seem to be the grey foam jobs, but keep several around, as they deteriorate with time. Eventually, your ears get somewhat used to the pull, but not really.

6.Pendant-Style nasal cannula--This is one you may not be familiar with. I got it from my Pulmonologist, who had to beep a respiratory technician at Lankanau Hospital to bring one up when I was in his office for a check-up. It's called the Oximizer Pendant Disposable Oxygen-Conserving Device (Code #P-201). It has a little bladder-like thing under your chin that acts as a reservoir so it actually allows you to absorb more of the oxygen your system is constantly pushing out on each breath you take. It improves your saturation level about 3-5 percentage points, which is a lot when things get tough. Here's what the package says:

Manufactured for:

CHAD Therapeutics
9445 De Soto Avenue
Chatsworth, CA 91311

When I say that this allowed me to avoid using a mask for probably another 3 months, I'm not lying. The truth is, I could never really sleep with a mask on, and this thing got me through a lot of tough periods, until I absolutely had to use a mask full-time. Also, when you have to leave the house, this thing allows you to get ore oxygen out of your portable tanks and/or liquid bottles, so they last longer--big advantage, there. They last maybe a couple of months, so get two, always having a backup--like everything.

I have lately located a source for this product--for $20 you can obtain one from:

Medical Home Care
202 Conestoga Road,
Wayne, PA 19087
voice: 610-687-6585
fax: 610-687-5123

This is a family-run company that is fairly close to me here in Southeast Pennsylvania, and for this information I must thank Donna DeBernardini at my pulmonologist's office, Pulmonology Associates.

7. 100% non-rebreathing oxygen mask--You have to hate these things, but they're kind of interesting from a technical standpoint--they allow you to modify them so that they can be used as a rebreather, a partial rebrealther, a non-rebreather, and so forth. They have these little valves on them that you can use or remove, thus reconfiguring them as needed. Initially, when you go to a mask, say for exercise sessions, it helps to use it as a rebreather, I found. It's just easier to use,and somehow it helps give higher saturation levels. I judged every change I made with the results I read on my oximeter, so that's your gauge for all things you try (in other words, get it first). If, however, you have to do something stressful and have precious little time for recovery, use it as a non-rebreathing mask, so you get maximum flow. And as your needs increase, you'll gradually have to use it full-time as a non-rebreathing mask, but let's not get into that right now.

Here are some things to remember about the mask thing, though--the stretch bands that go around your head pull out eventually--always at the worst time--so ALWAYS have an extra mask ON HAND. I'm talking about ON YOUR PERSON, in your fanny pack or whatever. AND, always have another extra one somewhere in the house for backup. You'll need it. The stretch bands actually pull out from the retainers, and you can get almost another month of usage if you tie a knot on the end after passing it through the receptacle on the mask, and this is what I would do. Then another knot as the band would stretch more, until one day it snaps and you just can't make it work any longer. Then it's backup time. The whole mask thing is an entire subject unto itself, and hopefully I'll get a chance to talk more about it, but let's move on.

8. Extra Hoses--Talking about the oxygen hose, the umbilical cord that ties you to the tanks. Get a few of different lengths, because before you know it, you'll be combining them, changing them, and so on. You'll need a good supply--we used to have an entire box in the closet filled with hoses from my oxygen supply company.

9. Splitters (a.k.a. Y-Adapters)--These are the little two-into-one Y-adapters you'll use to combine hoses, thus combining tanks, thus increasing the flow of oxygen. This is where my technical background took over--I was combining tanks like a mad scientist while the oxygen supply company kept telling me they had never seen it done before. At the end, I had FOUR 40-gallon liquid oxygen tanks paralleled up (four into two into one), thusly:
 

• Tank 1 connected up through a Y-adapter with Tank 2;
• Tank 3 connected up through a second Y-adapter with Tank 4;
• The outputs of Tanks 1+2 and Tanks 3+4 connected through a third Y-adapter, feeding my nasal cannula or mask through my 50-foot hose.

Simple. The flexibility this affords is amazing--an maximum available level of 24 Liters Per Minute of flow if (and when) I needed it, OR the ability to run two tanks while the other two defrosted, OR the ability to change out a tank (provided you blocked off the unconnected hose) without disrupting flow from the other tanks. liquid oxygen is a special beast--if you run it at its full flowrate of 6LPM, it will eventually freeze up, so you need an alternate to run off of while the frozen one defrosts. It can get pretty tricky. Believe me, you have so much to do managing this situation that you never feel sorry for yourself for having IPF--there isn't any time!

10. Hair Dryer(s)--No baloney. You'll need them to defrost the liquid oxygen tanks, and you'll blow one up in the process, so have a couple around. They need to be pretty sturdy, as they have to withstand a steady output on High to melt the ice--think of an old refrigerator with a  totally iced-up icebox in August. Got the picture?

11. Flow test gauge--This is how you'll tell the oxygen company that there is a problem with one of the tanks, or more likely one of the regulators--the bane of your oxygen existence. The Flow Gauge is a little test-tube with a styrofoam ball in it and a little length of chemical tubing on the one end that you plug right into the output of the tanks and see if it's putting out what the control says it's supposed to be putting out. Sometimes it is, sometimes it isn't. It will also tell you if the tank is getting frozen up or is unfrozen, so have one of these on-hand for sure.

12. Oxygen tank wrenches--As in plural. These are little things, and are used to tighten, install, de-install  and generally work with oxygen gas--not really liquid--tanks and their associated regulators. Always try to get 15-liter regulators (if you can), and get a few extras, as they fail and you'll need to swap them often. The wrench will allow you to do the job yourself, and you'll have to.

13. Oxygen regulator washers and other related hardware--Washers are a largely unknown quantity, and the item most often associated with flow problems (leakage). There is one kind and only one kind of washer to get and it's a little aluminum thing with a rubber center piece, and your oxygen company will tell you they don't make them anymore, but keep pushing, because the plastic things are COMPLETELY WORTHLESS. Let me repeat--the little grey plastic washers you typically get with new tanks are worthless pieces of crap. If you get your hands on a good washer, guard it with your life--it depends on it. If you have to turn in a regulator that is broken internally but has a good washer, take off the washer and put it in your fanny pack! I am completely serious about this.

14. Water bubbler--This thing typically goes on a liquid oxygen tank and allegedly supplies a little humidity in the oxygen flow to mitigate the dryness you may be experiencing. You may think you need one of these, but it's at the bottom of my list because it's really more trouble than it's worth and my advice is to avoid it lilke the plague. It's a maintenance nightmare, contributes to flow problems, is a harbinger of bacteria and isn't even necessary if you have good saline-based products such as the AYR products described above.

These are a few of my favorite oxygen-related things. You can probably see how essential the little things are to the entire equation. It's all in the details. Good luck, and I hope this treatment has been useful. Let me know if there are any other things I should add.

To return to WA3FLE homepage, click here.