NOTE: I have private HMO insurance
(Medicare supplements). My insurance originally had a severe cap on the oxygen
expense which I exceed with no problem. Now, I have a 20% co-pay for oxygen
expense. So, I viewed all associated expenses as
something I was going to have to pay. The equipment described in this
report is all patient owned. I made all equipment selections with a keen eye to
saving my money -- not with the latitude of having the insurance company paying
for all of it. My oxygen supplier has really worked generously with me in terms
of advice, purchase options, etc. They are Centura American HomePatient in
Denver. Terry Dahlgren, Branch Manager at CAH has been terrific. Another person
deserving recognition for her efforts and interest and without whom, I would
have had a much longer training period, is Ronda Bradley, Clinical Manager and
Research Coordinator at Mallinckrodt (now Tyco), the designers and manufacturers of the
HELiOS System that occupies much of this space. She was not only supportive when I got my unit, she was an
invaluable and competent resource when I was deluged with inquiries about HELiOS
from members of my COPD Support Group. That support group is www.COPD-Support.com
and is just as good today as when I was first introduced to it. Try it! Now, I
am with Apria Healthcare now. My insurance company decided to switch without
asking me first.
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In January of 1999, following a
bout with pneumonia, I was diagnosed with Chronic Obstructive Pulmonary Disease
with Asthma and Emphysema Components (COPD/A/E). I was immediately prescribed
supplemental oxygen 24/7, 3 liters per minute at rest and 5 lpm with exertion.
In addition, I was prescribed inhalant therapies. I take two puffs daily of
Advair and two puffs of Combivent four times a day. I am also taking
diuretics, medication for high blood pressure and thyroid medication.
After the diagnosis, my wife suggested that
I try to locate a support group on the internet where I might get some additional information on
the disease and how to cope with it. In particular, I wanted to ask a
single question: How does one travel with COPD and what equipment is necessary?
I located a web site that represented itself to be a COPD support group. I
registered and posed the foregoing question.
I was overwhelmed with responses
from the group. I found about 25 answers to my question and in addition, I found
hundreds of answers to questions that I had yet to think about. Some of them
literally changed the way I viewed my disease or led me to new technology that
made COPD a lot easier to live with.
One of the things that I learned
very quickly was why I was getting worse by the day. I was lacking exercise. I
was amazed to find out from the group that exercise could help. My God, taking a
shower was something I had to do in stages. That alone had to be all the
exercise one could stand.
My brother-in-law and his wife
were in the process of moving to the western slope. One of the things they had
that they didn't care to move was a Roadmaster treadmill that was literally
brand new. They had bought it for him following his recent heart attack but he
now wanted to walk only out-of-doors. They brought the treadmill into our home
and set it up in my family room. The first days were hard. I mean THEY WERE HARD! I struggled to walk 2/10ths of a mile the first day (5/5/00).
On 6/14/00, I
walked 7/10ths of a mile for the second day in a row and with no breaks to
cough, blow my nose, etc.. The treadmill doesn't go
as slow as I would have liked to start, but now, it's not a problem. In truth, I
no longer can go a mile.
I am learning a lot about myself
and my disease. For instance, my stats go off scale when I first exert myself,
level off as I continue to exercise, and then actually improve as I go on to
meet my objectives. It isn't without cost. When I walk 6 or 7/10ths of a mile,
it seems like there is nothing left. Note that impressive pulse rate of 70! What
an athlete! I
don't know where calories apply to any good use, but the machine provides the
information so I record it. It appears to be a linear function to the distance.
I don't know if it is affected by the speed. We will find out when we increase
the speed of the treadmill beyond 1.5 mph. Endurance is the issue -- not speed.
Following the exercise sessions, I
track date, speed (so far only 1.5 mph), time spent going the distance, calories
burned (from the treadmill), pulse rate during and at the end, oxygen saturation at the
end, the time of day I exercised, how long it had been since I took my meds, and
most recently, I added the barometric pressure at exercise time. I also note
good days, bad days, general health if it isn't great, weather, humidity and any
other notes that may give me a hint about my condition on any given day.
My compatriots on the support
group say they have good days and bad days -- just like me -- but they can't say
what makes them good or bad. I am determined to find whatever correlation there
may be. I have located a source of the local allergy indices on the internet. I
am going to track the group indices for trees, grasses, weeds and mold starting
tomorrow.
In any case, I still marveled at
the differences in the way I felt, day to day. No one in the group could help.
They all had the same question. Hopefully, this information, properly organized
in a database in my computer may yield some information. Another thing that
bothers us all is: why can we walk 7/10ths of a mile on our treadmill at home in
27 minutes and can't walk the first few stores in the mall in 2.7 hours? In
the final analysis, I found I crashed whenever the barometric pressure was
changing. A low barometer didn't hurt me nor did a high one. But the time it
took to change to whatever it is hurt.
My pulse/oximeter was the next acquisition. I convinced my doctor (and I can't say enough good about this man) that I would make responsible use of the device and
he wrote me a prescription. He also set my limits for exercise on the treadmill:
1) pulse rate was not to exceed 130, and 2) oxygen saturation was not to fall
below 88% during exercise. I needed to be able to check my oxygen saturation and
my pulse rate at any given moment. I got a small unit that just barely covers
the end of your finger, is battery operated, and can fit in a shirt pocket very
nicely. It has been surprising how much I have learned by using this device.
Sometimes, when you feel your best, your stats are in the cellar and sometimes
when you feel your worst, they are great. This disease seems to be one in which
you pay for your transgressions the following day.
One area where the group really helped me was when they were talking about this new
device called HELiOS. More information can be gained by visiting their web site.
This HELiOS, named after a Greek God, is an acronym for High
Efficiency
Liquid
Oxygen
System.
This unit is a reservoir system
(shown here in my living room along with my concentrator. All the ladies are
going to send me email condemning my use of the living room, but that is exactly
where it works out to reach everything it has to.
The
small portable standing at the base of the reservoir unit is the heart of the
unit and to me, the most wonderful thing that ever happened to anyone with a
requirement for supplemental oxygen. It weighs only three and a half pounds
completely full of 9/10ths of a pound of liquid oxygen. It has a convenient
carrying case which comes with a belt to wear it around your waist or a strap to
wear it over your shoulder. I prefer the strap because I like to set it down
while driving, dining out, or otherwise want it out of the way. The device
will last an average breather 10 hours at 2 lpm.
The unit delivers
oxygen in pulse mode up to 4 lpm. Hence, the presence of my concentrator which will go to 5
lpm. While on the HELiOS System, I have to limit my exercise to moderate (my
definition of moderate -- not yours unless you also have COPD). I use the
concentrator while using my treadmill. The concentrator is also a backup in case
anything happens to the HELiOS System. I've had the HELiOS over four weeks now and not a
hiccup.
The HELiOS System allows you to run off the reservoir by the use of a quick coupling
hose from the reservoir to the portable unit. I was instructed to employ this
method for a minimum of 10 hours per day to maintain lower pressures in the
reservoir. We all know liquid oxygen boils at 297 degrees below zero. The
reservoir is not a high pressure vessel and therefore would lose over a pound of
LOX a day if it wasn't used to feed the portable unit directly. When I first got
it, I strung the hose from the reservoir unit in the living room up to the
upstairs hallway, into the bedroom and then behind the headboard to my side of
the bed. The only place where the cord is exposed is where it crosses the
upstairs hall. I placed a throw-rug over it to protect it. I leave it there
until it's time for my house-cleaner to come. Then I coil it up to make sure she
doesn't catch the hose in the vacuum cleaner. The door to my bathroom is right
there as well, so it is a simple matter to pull some additional hose into the
bathroom for showers. I usually retire in time for the 10:00 o'clock news and
get through with my shower the following morning around 09:00 o'clock. This
provides 11 hours of reservoir use which has maintained the temperature just
below the 40 psi mark. The stand I use to place my HELiOS is a piece of
"early marriage" furniture that used to be a telephone stand when
there was only one kind of telephone that weighed about the same or more.
Because the HELiOS portable does condense some water out of the atmosphere while
running in this mode, I placed a washcloth underneath it to absorb the small
amount of moisture that would drip from it otherwise.
The tube from the reservoir unit
is not your everyday tube. It has quick-couplers on both ends and shut offs to
assure that if anything is disconnected at either end, your oxygen will not be
released. If you get HELiOS, get a spare tube.
Getting used to the HELiOS was not without it's challenges. For instance, my doctor
insisted I use oxygen while in the shower. It was easy to throw the hose from
the concentrator over the top of the stall and proceed from there. With the
HELiOS, you have a 3-1/2 pound controller on the end of the line from the
reservoir or you could use it independent of the reservoir. I shower first thing
in the morning and don't like the idea of going downstairs to fill up the
portable before I shower. I formed a hook to hold the HELiOS portable by it's
handle right at the top of the shower door. Then I throw the hose over the top
and I'm in business. If you can see it in the photo, I use the hook on the
clothes hanger on which to hook my capacity strap. This gives me a safety net as
extra protection for the portable unit. Believe me, as much as you learn to like
these small devices, you are highly inclined to take care of it. It works great! There are economic
considerations that turned out to be exactly the opposite to what I expected.
Everyone told me how expensive LOX was. I have a 46 liter reservoir. I
understand most people think of liquid oxygen in pounds, so roughly, the
reservoir holds 115 pounds if one can completely fill it. If that's true, then
my reservoir which had just lost the 3rd light of 8 on the tank gauge had
somewhere between 18-28.2 pounds left. Mallinckrodt assures me the gauge is
pretty linear. I got charged for 74 pounds at $0.88/lb or $65.12 for three weeks
worth of oxygen. That is an additional charge because my concentrator made
oxygen for nothing if one ignores the roughly $30.00/month that it costs on the
electric bill. But, wait! The E-Tanks used to (still do) cost me $13.00 apiece.
That $65.12 would only buy me 5 E-Tanks for when I went portable. The last time
I got by with only 5 E-Tanks in 3 weeks was never. And, I have not bought
a single E-Tank since I got my HELiOS. I saved $15 easy over what I used to use.
But then, with E-Tanks I didn't go portable as much as I do now because it was such a hassle.
I declined to go on errands preferring to let someone else go because I didn't
want to waste money on oxygen. Now, I insist on driving. Quite frankly, if I was
buying E-Tanks for the portable time I'm experiencing now, it would cost me a
fortune. With HELiOS, I can use it at home or behind the wheel of my toy. I
can't begin to tell you how many times I got hit in the teeth with the old
E-Tank while riding in a vehicle. I put it between my legs to keep it out of
everyone's way. If I forgot to hold on -- whap! Right in the teeth with the old
cart handle!
In practical use, I am free to move about without the encumbrance of the tube. Who
wants their world to be defined by a radius? I go out in the yard, pick up the
mail, run errands, etc. and never worry about it. I am FREE! And one thing that
I enjoy more than anything else is: I can refill it anytime I want to. I don't
end up trying to manage many partially filled E-Tanks. If I don't know how long
I'll be (and because it is so efficient, I don't have to manage right down to
the last minute), I just refill it and I'm good to go for a long time. I'm not
getting 10 hours out of it, but more than 6 ordinarily. I have the flow control
right there at my fingertips. I typically run it up to 4 if I'm going to be
moving around and back down to 2 when I'm idling.
Cannulas are a
consideration. I wish there was a compromise. I was originally provided a 5'
cannula manufactured (or at least distributed) by Mallinckrodt. It has a snazzy
way of getting the ends of both tubes (lumens) into both nostrils. They work
great except they incorporated a bit of a paddle on the back of the nosepiece
(probably to keep the wind from influencing the performance) and at lower rates,
that thing is hard for me to breathe around. The length is a little long for
when you're carrying it over your shoulder. It forms a loop that catches on
every cabinet handle out there. The shorter one of the same model is 4' long but
wouldn't reach if you decided to set it on the floor while standing. My oxygen
supplier provided me with a 7' cannula with separate hoses but only one tube
into each side of your nose. The length was great when in the shower and
afforded me a little more freedom while in bed. The extra length was a real
problem while moving around. 7' is exponentially more trouble than 5' when
exposed to things on which it can catch. The device is so small now, you
hesitate to recommend additions of any kind. But, maybe a reel mechanism to
allow you to vary the length of the cannula between 4 and 7 feet might be
considered.
The valves to fill
the portable unit are on the top of the reservoir and the bottom of the
portable. So, when planning your trip with a traveling LOX reservoir, keep in
mind you will need an additional 12-15 inches above the reservoir to fill your
portable. That was impractical in our Buick Park Avenue. The tank wouldn't fit in
the trunk and we have insufficient clearance in the back seat. I had to trade my toy pickup for a van for our
travels. I'm
not happy about that, but guess what? The HELiOS System is worth it. NOTE!: Be
sure and provide for adequate ventilation for your traveling LOX reservoir. The
Lincoln Town Car can accommodate one in the trunk, but what to do about
ventilation. The PB Companion reservoirs are not nearly as efficient as their
Helios counterparts and are subject to boiling off and therefore ventilating
pure oxygen to the atmosphere in pretty fair quantities. Collecting that stuff
in a closed area can be dangerous. AND NEVER allow anyone to refill the
reservoir while it is still sitting off the ground in the vehicle.
I lacked the confidence to travel when I first went on oxygen. With this new gear and the
purchase of a new Pontiac Montana which has all kinds of places for attaching
bungee cords and a PB21A, 26 liter Puritan-Bennett liquid oxygen tank from a
local supplier which stays permanently bungee-corded in the van, we are much
more mobile. We have made major driving trips to family reunions and
genealogical research trips as far away as Tennessee and as long as 15 days.
This picture shows to what extent we go to relieve my wife of worry on major
trips. The PB21A tank is at the far left. My DeVilbiss MC84 concentrator is in
the center. The rack on the far right is 6 E-tanks. A 7th E-Tank is already
installed in the cart with a PB CR-50 conserving flow regulator and is behind
the front seat and available if we can't stop to refill the HELiOS. The liquid
oxygen tank and an E-tank for emergencies are the only things we pack for lesser
trips such as overnighters to Cheyenne or Pueblo. Traveling is altogether very
comfortable for me. I use the E-tanks just outside the showers in the motels. I
am afraid to hang the HELiOS on something I didn't install. The concentrator is
for nights when I am staying in one place for a while. It allows me to sleep the
entire night without refilling my HELiOS. At lower altitudes (<1500 feet),
the concentrator is unnecessary because I can last all night at only 1 liter per
minute flow rate.
NOTE: Liquid
oxygen reservoirs boil off pure oxygen. Any combustibles will burn violently in
an oxygen rich atmosphere. Make certain your storage area is well ventilated.
Beware of closed areas such as automobile trunks (the Lincoln is the only one
big enough for my PB21A).
If you have questions regarding
this information, please use the registration page and leave me your question.
