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Living with COPD

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 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 now take two puffs daily of Advair (500/50) and Albuterol nebulizer treatments four times a day and Spiriva. 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.

Author's Note: COPD is a genuine chronic, progressive disease. When I originally wrote the above text, I had only 28% of my lung capacity left (FEV-1 measurement). Now, I have 16%. I can no longer do the treadmill and my oxygen requirements are 6/10 liters per minute at rest/with exertion respectively. I can no longer make long trips in the car and short, local trips have to be limited to what I can tolerate at 4 lpm from the Marathon, the larger version of the original Helios system. 6-10 liters/minute are not practical to deal with on a portable basis. While some devices can go that high, it really is more of an exercise to get all you can do with only 4 with the Marathon. The Marathon goes to 6 continuous, but doesn't last long at that rate.

I did more than take from I was asked to join their Smoke-No-More group as an assistant team moderator on one of their advanced teams. I gladly did so. When the moderator retired, I assumed his position. Later, I was privileged to back up the president of the organization with my computer skills. I'm still involved in that effort and it is expanding. I have also been appointed to their board of directors and was duly elected as same at the following board meeting. I continue to serve as Administrative Manager of the Smoke-No-More program and interact with the team leaders and moderators on a daily basis. If you are interested in joining our group for support during your quit, click on the link at the front of this paragraph.

Living with COPD: Inner_about
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