The Rocky Mountains, With COPD using oxygen and a small scooter

This adventure actually began in the spring of 2006. Fran's sister who had been living in Concord, CA had purchased land in Alturas CA and built a new log home on it. It had been a couple of years since Fran had seen her sister Jo Anne, and we discussed a driving trip out since I had hated flying before and would probably find it near impossible with my COPD requirements. I had lived in New Mexico and west Texas for about eighteen years and hoped to also use the trip to take Fran to some new spots that we we not able to make on a western trip several years ago. If you have any interest in that trip the write up and photos are at ( http://millians.home.mindspring.com/latest_stuff.htm ).

I was already not to satisfied with my pulmonologist and when I queried him about the trip his response was, "Absolutely not! If you try going to 5,000 feet or more you might as well go home, get in bed and die. The trip would be too difficult for you and "I" would not be there when you got in trouble." This response did not improve my poor opinion of his abilities as a doctor for me. I want someone who will explain the risk and problems to me then leave the decision to me. If I decide I want to do something then I want a doctor to supply help and support not one that tells me to "Go home, get in bed and die!"

At a later point in the year he did agree that we could go to the National Storytelling Festival (NSTF) in Jonesborough TN which is around 2,000 feet. The NSTF is a long-standing tradition. Fran and her son, David, have been going for almost twenty-five years, and I have too since we have been together. I have two scooters and we decided we would need the large industrial model to be able to take the hills around Jonesborough, so we got a lift to carry that one. It will also take a five-inch curb or jump a similar-sized log if necessary. The small one breaks down into four parts, none of which is over twenty pounds and could easily be stashed in the back of the Toyota Sienna with the luggage. The trip was very successful; no problems with car or scooters. The big one flattened the Jonesborough hills, and the small one was great for zinging to the Cracker Barrel next door for breakfast or dinner.

I seldom used oxygen while there except at night with my CPAP. I was able to get around and see and hear all the storytellers that I was interested in. We would carry the big scooter on the lift over to the handicapped parking area and unload it. I would use it to run around Jonesborough all day and then we would reload it on the lift for the trip back to the motel in the evening.

After that successful trip we figured there should be others to look forward to possibly even greater altitudes.

Note that the COPD is not the only reason for the scooters. I also have peripheral neuropathy in my feet, a result of chemotherapy for bladder cancer. That makes walking more difficult that the COPD does.

I next saw my pulmonologist in January of this year and asked Fran to accompany me since she is often a better judge of people than I am. However, I had been dissatisfied with this guy ever since I first met him in 1999. I was sent to him by my urologist after I was diagnosed with bladder cancer, another gift of all those cigarettes, who was concerned that I might not be able to survive the operation he was recommending, a radical cystectomy, removing my bladder and replacing it with an Illeal conduit to an external bag. After test. inspections and biopsy, I had been diagnosed with "Invasive" bladder cancer. "This one could kill you," the urologist explained. The pulmonologist gave me a very brief overview, made no comment about what I was there for and then started trying to talk me into joining his sleep apnea study. It probably was a good idea since I was later diagnosed with sleep apnea but that was not what I was there for and nothing was said about that issue. He did prescribe a couple of inhalers that I used for awhile and then dropped.

Surviving the operation became a moot point since via my Internet research I found and chose another treatment option that would allow me to retain my bladder and sex life if it worked for me. That story is also available at ( http://blcwebcafe.org/stories/mmann.asp ) if you have any interest.

I did not see the pulmonologist again for several years when I began to have more problems breathing and was sent back to him by my PCP. This time around there were several prescriptions including Advair and Spiriva and a nebuliser with DuoNeb. After about a year I told him I was going to drop the Advair and Spiriva since they were very expensive and I could not "tell" they were helping me whereas I could with the nebuliser and DuoNeb. It did not make any sense to me to pay such a high price for something that did not seem to be helping my situation. He allowed me to stop taking them without any argument or explanation of how they worked differently and longer term than the nebulizer.

Over the next several months I got in worse shape with many SOB incidents and some embarrassing situations but never really connected it to having stopped the Advair and Spiriva. Another bothering thing is that I had bronchiectasis when I was young and as a result had two-thirds of my right lung removed when I was twelve years old. This did not prove to be to great a problem for me, I was a competitive swimmer and diver in high school and also an avid skin and SCUBA diver. I also competed in gymnastics in college. I would think this early surgery is fairly unique and that a doctor should be able to connect that fact with a particular patient, but this doc does not seem to be able to do that. I have repeatedly had to remind him of the operation, including a panicky late night call to my home after a scan had reviled "a problem with my lower right lung." It happened again at the January meeting when I lifted my shirt for his stethoscope and got "what is the scar about?" These things said to me that he was more interested in his latest research project than he was to my or any other of his patients' conditions. I had a complete battery of respiratory test, when I first saw this doctor but he has not ordered follow-up test in over eight years despite changes in medications and conditions. (i.e. He doesn't know or care where the hell we are and will not be able to tell whether things are better or worse or not.) While in his waiting room in January I picked up a COPD Magazine and noticed an ad for a "Personal Pulse Oximeter." I took the magazine in when called to see the doctor and I asked him if he thought it would be helpful if I bought one. His comment was, "If you have nothing better to do with you money."

After the January session I decided to do for my COPD what I had done for my bladder cancer and started researching the Internet and quickly found the EFFORTS group for COPD and Emphysema. Through this group I was able to make contact with Dr. Tom Petty, a world renowned expert on COPD, and Mark Mangus, a Respiratory Technician with about every certification available and who monitors the EFFORTS list Monday through Friday. He is available to list members individually. I sent my available data to both of them and they both thought I should be able to manage the higher altitudes provided I was on oxygen and monitored my SPO2 with a personal pulse oximeter that MY pulmonologist thought was a waste of money.

Mark also recommended that I go back on the Advair and Spiriva and was able to explain in a very short and brief e-mail message how they worked differently than the short term DuoNeb and why I might not "feel" that they were working. I restarted the medications and in a few weeks was back to my old self. I also learned that there were some critical timing and sequencing needed to assure maximum effect of the medications. This aspect had never been mentioned by my pulmonologist or his nurse - another mark against him.

When I saw my PCP again the next month I told him I wanted to fire my pulmonologist. He was somewhat taken aback and told me he was a good doctor and also that there was no other pulmonology group or doctor in town. I told him that I wanted another opinion then and we made arrangements for me to go to the University of Florida's Shands medical facility in Gainesville, Florida. However, it would be a few months before I could get an appointment.

In the interim, David, who teaches at a private school in Atlanta, called with several needs for assistance; first, he had obtained a Fulbright Scholarship to study in China six weeks; second, daughter Ellen was signed up the attend a Japanese language camp in Minnesota and there was an overlap. What he needed from us was, could we, first, take Ellen for a month while David was going to or in China, and, two deliver her to her camp in Minnesota and, three, retrieve her after it was over, since he would be returning from China that same weekend? We, of course, said that we could do all of that. In our discussion and based on additional information from Dr. Petty and Mark Mangus, we decided that in the two weeks Ellen was in camp that we could run out to Alturas to visit Fran's sister Jo Anne and also try to do Yellowstone NP and the Cody, Wyoming museums that Fran had never seen and maybe sneak away for a day to Lassen Volcanic National Park which was about one hundred miles from Alturas, about a two hour drive.

I mapped and scheduled the travel plans; deliver Ellen to camp in Minnesota and go the northern route through North Dakota, Montana and Oregon to Alturas and visit Jo Anne for a few days. On the return over the almost identical route go to Jackson Hole, Wy, Grand Teatons, Yellowstone, Cody and back to pick up Ellen. Fran picked up Ellen as soon as school was out and brought her down and things were fine for awhile but then she began to get a little home sick and despondent. We decided to invite her best friend down to visit to be company for Ellen after our trip for the Shands consultation. At Shands I had my first complete respiratory test in eight years. If you are interested in my numbers for possible comparison they are available at, Mike's Shands' PFT results. I also was examined by Dr. Veena Antony, who had been a student of Dr. Tom Petty, and her student a week before we were to leave on the trip. Dr. Antony also thought I should be able to make the trip with no problem provided that I was on O2 at altitudes and monitored my SPO2 levels with my pulse oximeter. Dr. Antony's comment was that, "Life is too short to start, 'not doing' the things that you want to do.".

The weeks before we were to leave, the Tallahassee pumonlology group was running ads in the paper announcing that they had a new doctor. I was seeing my PCP at that time and he explained that it was normal timing for medical residencies to be ending and new doctors to be added. I called and asked to be switched to the new doctor. There was some reluctance to allow me to change but they finally agreed when I told them I was getting a new pulmonologist and that I could either do it there and they could have the income or if necessary I would change to Dr. Antony at Shands. I think that finally got their attention and they made me an appointment for August 16, next week.

The week of final preparations brought many additional problems. I had made arrangements with my Oxygen supplier, American Home Patient, for the use of what they called a portable oxygen concentrator for the trip, a Respironics Everflo. They call it portable since it is somewhat smaller and lighter than the one by my bedside. However, it is not truly portable and does not operate on batteries. I also made arrangements through them to be able to exchange empty "C" tanks for full ones at their offices while we were on the road. However, when I checked their web site I found that they did not have offices in any of the western states that we would be visiting.

I had been interested in and was researching the Sequal Eclipse as a truly portable Oxygen concentrator and found that I could rent one at a reasonable rate from the Wesener's at American Medical Sales & Repair, $295 for the first week and $195 for each additional week. They would overnight it to me, at my expense, so I could have it for the trip.

I also ran into problems with my PulseOx 7500 and found that I could not either up, or down, load from it. SPO Medical also agreed to have one overnighted to me for the trip.

Early Sunday before our scheduled Friday departure the phone rang. One of Fran's oldest and dearest friends had died in Atlanta and the funeral was scheduled for the Saturday when we should be half way to a camp in Minnesota. Frantic phone calls and rework of plans. Ellen's mom would take off from work and fly her to camp after she and Fran attended the funeral. Since we no longer needed to go the Minnesota on the front end I remapped and rescheduled our route to follow the southern path to California. This had the advantage of being able to stop and visit with my oldest daughter in Lubbock, Texas, not possible with the northern route. We would drive to Atlanta on Friday as previously planned but stop there and not go on to Chattanooga as we had planned. Fran and Ellen would attend the funeral and other family activities on Saturday and we would start west on Sunday morning.

At the last minute I decided against taking the large scooter. It just didn't seem to make sense to haul it all the way across the country and back just to use it once or twice in Yellowstone. Also the amount of luggage that had to be initially loaded into the car was a factor. Do you have any idea how much luggage is required for two twelve year old females? In particular when one of them needs enough clothing and bedding to last through two weeks of a camp? Part of the reason is that when the scooter is on the lift we can not go into the van via the rear door without unloading it, not an easy process, and everything would have to be loaded and unloaded via the side doors and past the middle seats, making it much more difficult. This later proved to be a very wise decision. Since we did not expect to be using the little scooter that often we would just load it in the car with the luggage.

So we are finally off to learn if a sea level COPD patient can survive at altitudes above 5,000 feet!

Click for a Route Map.

FRIDAY, July 20, Home to Atlanta, 315 miles- Nothing of significance. We go to Atlanta often and it is only about 1,000 feet.

SATURDAY, July 21 - Atlanta, Fran and Ellen attend funeral.

SUNDAY, July 22, Atlanta to Shreveport, 600 miles- Nothing important. Shreveport is about 250 feet. After checking into the motel and looking for a place to eat I spotted a "Poncho's Mexican Buffet" where I often ate when I lived in New Mexico. I was amazed to see one because someone had told me then had gone bankrupt and out of business. I spun around and went back, the pickings were pretty lean since they were on the verge of closing for the night, but it was nice to eat at Poncho's again and to be able to have sopapillas with honey.

MONDAY, July 23, Shreveport to Lubbock, 518 miles - Late in the hot west Texas prairie afternoon as we were approaching Lubbock we made a pit stop both unload and load fresh water. I had an extreme SOB and almost did not make it to the bathroom. Started using my O2 "C" tank for the rest of the way into Lubbock and for dinner with my daughter that evening. It was obviously time to go on O2 full time and also start monitoring my SPO2 levels.

We tried using the Eclipse for just walking around but found the disconnecting and reconnecting it in the car somewhat of a hassle. We deided on just using the Eclipse in the car and "C" tanks would be easier to pick up and go with on outings from the car. (When I learned I was not going to be able to exchange tanks during the trip I brought along ten extra tanks.)

TUESDAY, July 24, Lubbock to Holbrook AZ, 556 miles - Lubbock was at 3,000 feet and Holbrook at about 6,000 feet and some places en route were higher. I used O2 all day, my rented Sequal Eclipse in the car at 3LPM and a "C" tank at 6LPM when moving around outside. My SPO2 levels for the day were excellent, never going below 88% ( SPO2 Report 7/24/2007 ). My O2 setting for my CPAP at night is 3LPM, Mark had recommended adding 1LPM for each 2,500 foot increase in altitude. At 6,000 feet to be on the safe side I figured I needed 6LPM. The "portable" (i.e. smaller and lighter) Respironics Everflo would only do a maximum of 5LPM on constant flow which I needed for the CPAP, my Eclipse would only do a maximum of 3LPM on constant flow. My daughter had managed to get for me a few "Y" connectors for the O2 lines with which I was able to connect the Everflo (@ 3LPM) and the Eclipse (@ 3LPM) to a single line feeding into my CPAP for a total of 6LPM. My facial color was excellent the next morning indicating a good night.

WEDNESDAY, July 25, Holbrook, AZ to Tonopah, NV, 553 miles - Still on O2 and Tonopah is also about 6,000 feet. Another night of spliced-together concentrators. The day's SPO2 report ( SPO2 Report 7/25/2007 ). Getting off the Interstate in Reno to eat I spotted a Weinersnitzel, another place where I often ate when living in New Mexico. One of my minor trip goals was to have one of their "Polish sandwiches" for lunch. Another goal was to have Blake's "Lottaburger" cheesbuger with green chile but unfortguately a Blake's was neve spotted.

THURSDAY, July 26, Tonopah, Nv. to Alturas, Ca, 402 miles - Fran mentioned during the day that Jo Anne's house was not air conditioned. Since I had already determined that the heat created greater problems for my breathing than the altitude, I opted to stay in an air conditioned motel while Fran stayed with her sister. The day's SPO2 report ( SPO2 Report 7/26/2007 ).

FRIDAY, July 27, Alturas, Ca. - Visiting with Jo Anne. Today's SPO2 report was lost when I stupidly did not check the date and wiped it out with the report for 7/28.

SATURDAY, July 28, Alturas to Lassen Volcanic National Park, 285 miles - I stepped out of the car, tethered to a 7 foot cannula attached to the Eclipse between the front and back seats, with a pulse delivery of 6LPM to take a picture of a field of wild flowers at almost 8,500 feet. I was extremely SOB with just a step or two and would require a higher oxygen delivery at these altitudes. The SPO2 report is incomplete due to me loading it for 1-second recording intervals instead of 2-seconds, and it filled up its storage area and stopped before we reached the park ( SPO2 Report 7/28/2007 ). Jo Anne was preparing dinner for us at her home that evening but I had already decided that I would not be able to stand the heat, even long enough to have dinner. I dropped Fran and returned to the air conditioned motel to snack.

Photos are available at ( http://picasaweb.google.com/MikeNFran/ )  Click an index photo of an album you are interested in seeing.  This pulls the album up and above the first picture is a "Slide show" button.  Click that to see almost screen sized photos with captions.

We had put the small scooter on the external lift since I thought I might want to use it in the park but we did not. About the time we were leaving the park the cruise control failed. I figured it was because I had not shut it down properly while on the mountain roads of the park. After dropping Fran at Jo Anne's I did a poor job of parking at the motel and was blocking a sidewalk with the scooter lift. When I went to move the car forward I could not shift out of "Park" to move the car. Called AAA and they sent someone who was able to move the car using the "shift override button" and also showed me where it was and how to use it. I also found that I could not lower the lift electrically and had to manually lower it to remove the scooter. All of this happening at about the same time should have struck a cord but it did not. Fran was in somewhat of a panic since the car was relatively new and we still had to get to Minnesota to pick up Ellen after her camp was over.

SUNDAY, July 29, Alturas, Ca. to Boise, Id, 392 miles - We met Jo Anne for breakfast at one of her favorites, The Wagon Wheel Restaurant, then gassed up, loaded ice into the cooler and hit the road to stop in Boise for the night. The day's SPO2 report ( SPO2 Report 7/29/2007 - 1 ) and ( SPO2 Report 7/29/2007 - 2 ) the PulseOx shut down on me again but when we stopped at an Oregon Welcome Station I got out the laptop and set it up for a second session. A very bad day: all the states around Oregon have 70 and 75 MPH speed limits on those wide open see for a good fifty miles secondary roads but not Oregon they are still at 55 MPH. I tend to have a lead foot and with the cruise control not working near the end of the day I ran across an Oregon highway patrolman to the tune of about $250. When I got into the motel that night I could not download the day's SPO2 report from the meter. I called SPO Medical and they said they would overnight me a replacement to out next stop which was West Yellowstone, Montana. Unfortunately it would not get there until after we had gone through the park. So it seems I will not have SPO2 reports for the two times that I really wanted them when I was moving around at high altitudes, in Lassen and Yellowstone National Parks.

MONDAY, July 30, Boise, Id to West Yellowstone, Mt, 378 miles - Just driving. We made a call from the road back to our mechanics in Tallahassee. When we explained the problem of not being able to shift out of "Park" without using the shift override button, he suggested that we look for a blown fuse because we probably did not have any stop lights either. He explained that your foot had to be on the brake to be able to shift out of "Park." That circuit and the stop lights went through the same fuse. We did find a blown fuse and replaced it a couple of times but it very quickly blew again. We also called from the road to arrange to have the car looked at by a Toyota Dealer in Billings, Montana on Thursday,

TUESDAY, July 31, Yellowstone National Park, lower or southern part, 158 miles - We tried to get an early start to the Norris Geyser basin. I had found it and the Echinus Geyser much more impressive on my first Yellowstone visit. I was using the scooter but when I looked at the hills surrounding the Porcelain Trail section I decided they were probably too much for the scooter and let Fran walk that section alone while I waited and took some photos at the overlook.

After she returned we did the Back Basin Trail together. This went well except for one hill where I got off the scooter and walked along side it up the hill. No problems and no SOB. I had the Sequal Eclipse in the scooter's rear basket, on battery giving me O2 at 6LPM on pulse or demand setting. We ran into another hill problem when we were about 95% finished with the trail. The heat was up and beginning to affect my breathing. We ran into another large hill and I did not get off the scooter soon enough. Under the strain of carrying me up the hill it popped the main circuit breaker and shut down power from the batteries. I quickly reset the circuit breaker and restored power but the scooter would not restart even though I turned it off and on several times, trying to get some activity. It was getting hotter and breathing more difficult, and I was concerned that I would not be able to walk the short distance out up the hills and stairs that were ahead. I was beginning to wish I had brought the large scooter it would have taken these hills and the ones around the Porcelian Basin without even straining.

About that time, three good Samaritans came along and pushed me all the way back to the car in the parking lot. This was done with some difficulty since the scooter has a speed governor and if they pushed too hard and fast the wheels would lock up until a slower pace was set. We left the Norris area and had lunch at the Canyon Village cafeteria.

We followed the southern route with several stops for taking photos of Buffalo and for traffic stops with Buffalo in the road. We stopped at the Old Faithful Geyser basin but did not stay for the erruption. While Fran was chccking on Old Faithful I tried the scooter again and it had come back to life, We made another stop at the Midway Geyser basin before returning to the motel in West Yellowstone.

At this point I almost wished I had put up with the problems and brought the large scooter. I would have easily been able to do both the Porcelean basin and the back basin without it even straining.

Photos are available at ( http://picasaweb.google.com/MikeNFran/ )  Click an index photo of an album you are interested in seeing.  This pulls the album up and above the first picture is a "Slide show" button.  Click that to see almost screen sized photos with captions.

WEDNESDAY, August 1, West Yellowstone, MT. to Billings, MT, 234 miles - More of just driving. The day's SPO2 reports ( SPO2 Report 8/1/2007-1 ), ( SPO2 Report 8/1/2007-2 ), ( SPO2 Report 8/1/2007-3 ) and ( SPO2 Report 8/1/2007-4). Due to movement and/or the probe slipping off my finger the Oximeter shut down several times before restarting and this resulted in multiple reports for the day instead of just one.

THURSDAY, August 2, Billings MT. to Cody WY and back, 214 miles - Rented a car while the van was being looked at and drove to the Buffalo Bill Historic Center in Cody, Wyoming that has five fantastic museums; Plains Indians, Whittney Western Art, Draper Museum of Natural History, Buffalo Bill Wild West Show memorabilia, and the Cody Firearms Museum. The day's SPO2 reports ( SPO2 Report 8/2/2007 ).

Again, Photos are available at ( http://picasaweb.google.com/MikeNFran/ )  Click an index photo of an album you are interested in seeing.  This pulls the album up and above the first picture is a "Slide show" button.  Click that to see almost screen sized photos with captions.

All of the car's problems, no cruise control, not shifting out of park, no stop lights and no power to the scooter lift were all a result of a single electrical short and when it was fixed everything was working as it should again.

FRIDAY, August 3, Billings MT. to Fargo ND/Moorhead MN, 711 miles - Another hard day of driving to have us in position to be able to pick up Ellen at her end-of-camp on Saturday morning. North Dakota is an interesting state. It dosen't seems to have all the Interstate exits surrounded by all the chain motels, restaurants and fast food joints. As a result there are no billboards to tell you what is coming up at the next exit. What a relief to be without them for several hundred miles. ND also does not have gas stations at its exits. When we realized that we were low on gas we had to drive ten miles off the Interstate to find a small convenience store in a rural town in order to gas up. The day's SPO2 reports ( SPO2 Report 8/3/2007 )

SATURDAY, August 4, Fargo/Moorehead to Dent MN to Eau Claire WS, 349 miles - We still had an hour's drive and had to find the camp in rural Minnesota to pick up Ellen, watch the closing ceremonies and on to Eau Claire for the night's stop. The day's SPO2 reports ( SPO2 Report 8/4/2007-1 ) and ( SPO2 Report 8/4/2007-2 ).

SUNDAY, August 5, Eau Claire, Ws to Indianapolis, In, 558 miles - Another hard day of driving. Drop Ellen off for a visit with her mother's folks and we bed down for the night at a motel on the the southern edge of town. The day's SPO2 reports ( SPO2 Report 8/5/2007-1 ) and (SPO2 Report 8/5/2007-2 ), I am pretty much back off of oxygen support at this point except for possible use of a "C" tank while moving around but no Oxygen in the car.

MONDAY, August 6, Indianapolis, In to Atlanta, Ga, 528 miles - Another hard driving day headed for home. By stopping in Atlanta instead of the planned one in Chattanooga we could have breakfast with David, just returned from China. The day's SPO2 reports ( SPO2 Report 8/6/2007 ).

TUESDAY, August 7, Atlanta, Ga to Home! 315 miles, trip total 6,697 miles - Great trip, lot's of hard driving to get to everything we did and saw but a lot fun and worth it. Best of all is knowing that I can go back and do more if I want to. I did not die and I wasn't ever laid out with EMTs and doctors hovering over me. The day's SPO2 report ( SPO2 Report 8/7/2007 ).