My husband has been on oxygen 24/7 for almost a year now. He has emphysema and COPD. Not surprising after 40 years of smoking 1-2 packs of cigarettes a day. Now, this isn't going to be an anti-smoking post, just giving you some background.
When we leave the house, he uses portable tanks. Small ones that can be carried last about an hour at the flow rate he's on. He also has some larger back-up tanks to use it the power goes out or for longer distances that last about 5 hours. There are portable concentrators (the machine that extracts the oxygen from "air" and pushes it through the tubing) that run on batteries so there is a constant flow and, as long as your battery doesn't die, you don't have to worry about running out. All the powers that be say they want oxygen patients to live as full and normal life as possible, and there's the rub because after saying that, they make it as difficult as possible. Let me explain...
Bill is a patient at the Mayo Clinic in Jacksonville, Florida. We live in Arkansas. Twice a year we travel to the clinic for check-ups. These visits include several appointments with different departments which mean several hours on the clinic side of the facility with lots of walking. We just completed one of those visits, and this is his "annual" visit, which includes more appointments than the semi-annual one.
Two weeks prior to leaving I contacted our oxygen supplier to see if we could get one of the portable concentrators. These also come with AC/DC adapters so that he could just be plugged in while riding in the car. I could also plug it in in waiting areas if need be. Two days before leaving I found out that we could not get one of them so I arranged for us to get extra large tanks to use in the car for the 2 day drive. We would also need one for the first day of appointments. Then, a local supplier would replenish the tanks to get us home.
The first travel day used 2 of the large tanks, which I expected. The second day used one of the tanks. I should also explain that we have a small concentrator that is used in the hotel rooms. We had 4 of the large tanks, so we now had 1 tank left for the 7 hour day of appointments. Since I had arranged for new tanks to be delivered to the hotel Monday afternoon or Tuesday, I was comfortable with the supply we had left. We also had 4 of the 7 small tanks left. I did not receive a call from the local supplier and when I called our supplier, we had 3 1/2 hours of portable oxygen left. I was assured that the local supplier had been notified, but she called them again. Tuesday was an easy day as far as appointments went, but when they were done, we were down to 1 small tank. I called again and this time got a call back telling me that the supplier didn't deliver, but I could take the empty tanks and exchange them. Now, these tanks are about 2 1/2 feet tall and there were 4 of them, plus a 6 pack of small tanks. All of these, even empty are heavy. But, we loaded all of them into the car, programmed the navigation system for the address and set off, during the first part of rush hour in a city I'm not really familiar with. But, we managed to get it done and I could relax a little. His next day of testing was an outpatient procedure that would take several hours, but I knew he would be attached to hospital air. I had a full small tank in my backpack for him to use when he was discharged. Things went smoothly and he didn't need to stay as long as expected. While he was getting dressed, I attached the regulator and tubing to the new tank but when I used the key to open the valve, all it did was spin. So, this tank was useless. Luckily I had not taken all of the big tanks up to our hotel room so, when I went to the car to meet him at the door, I got one of them ready. We also got another small tank that let all of the air out as soon as I opened the seal. We left the next day and when we got home 2 days later, we had 1 full big tank and 1/2 of a small tank.
Some of you may be thinking that we made it there and back, and even though it was difficult at times, what's the problem. So, I'm going to let you know more what it's like to travel with all of those tanks, and only on their usage, not on how to pack them into a vehicle. Also keep in mind that my husband is 74 and I'm 62.
Starting out using big tank #1. Stopping for a potty break/lunch, disconnect from that tank, change to small tank. After the break, back in the car, disconnect from the small tanks, reconnect to the large tank. Stop to change to big tank #2 at the gas station, changing also to small tank #2 to use the facilities before the big tank. Arrive at hotel for the night.
Day #2 big tank #3, but since it was a shorter day, didn't need to use #4, but used another small tank. Our supply has now dwindled to 1 large tank and 4 small tanks.
First day of appointments, connect last big tank, but carry 2 small tanks for back-up. Was able to be seen a little early for some of the appointments so back-up tanks weren't needed. Down to 3 1/2 small tanks for 2 more days of appointments. Remember, these small tanks only last about an hour and we needed to go out for meals. First call made to supplier.
Day 2 of appointments was a short one, but still used 2 1/2 tanks. Now down to 1 hour of portable oxygen. Second call made to supplier and then the trip to pick up new tanks.
Day 3 used small tank and then had first bad tank episode.
Day 4 used big tank that was used in the emergency situation with the bad small tank. After stopping for gas, swapped to small tank to use the facilities and then changed out big tanks.
Day 5 used 3rd big tank and last small tank before arriving home with 1 full big tank and maybe a small tank.
All of this could have been much easier with one of the portable rechargeable concentrators. I told Bill that I would not do this again. There are places that rent the portable concentrators for travelling for about $500/week. To me, that would be well worth the money not to have the stress and aggravation of changing the tanks. We see our pulmonologist in August, and I'm going to see if she will write the order for one of those.
Now, some of you may be wondering why we just don't fly and get there sooner. It would still take more than 1 of the small tanks since it would most likely mean a layover somewhere. And I don't think the tanks are FAA compliant. The only other alternative would be to move to Florida, but we would still be in the same boat.
So, my question is: Why do those in the position of making these decisions make it so difficult? As I said, they tell you that they want you to live a full and active life, and then they make it so hard to do. It's no wonder that so many oxygen patients become shut-ins. I would like for one of them to have been in the car with us to see just what it entails with all of the tanks, but there wouldn't have been enough room!
OK, thanks for letting me vent. I'm thinking about a letter writing campaign to senators and representative, Medicare, Tricare and anyone else in the position of making decisions for someone they've never met. But, I doubt that it will do any good. If anyone has any suggestions, please comment and let me know what you think.
