Dr. Tom Petty tells us that now that he is a user of oxygen, he has a different perspective than when he was studying and promoting Long Term Oxygen Therapy (LTOT). He asked us to send the following message out to all of you who might have contact with oxygen patients, or are on oxygen yourselves. Spread the word!

  • Dear Friends,
  • Now that I am a consumer, I have gained additional perspective about LTOT (Long Term Oxygen Therapy). I decided to write a new book, "Adventures of an Oxy-Phile". I will cite the scientific basis for LTOT in appendices, but start with my own adventures, beginning with our first studies of ambulatory LTOT in 1965. I will then add my own vignettes "from the other end of the stethoscope."
  • I hope you and your friends will contribute a one to two page anecdote of something funny, frustrating or especially interesting about LTOT, particularly when the use of oxygen allows work, travel or adventure. Please have these sent to NLHEP@aol.com by September 15th.
  • This should be fun to put together and will probably stimulate a lot of readership. Hopefully CMS (Center for Medicare & Medicaid Services) might also be interested.
  • I hope your summer is going well. Best regards, Tom Petty
  • Memo from Mary: Have you thought of a story you would like to tell? There are so many anecdotes that I could relate about the use of oxygen that it was hard to decide which ones to send in for this book by Dr. Petty. Cruising is taken for granted these days. That pleases me, as I think back to the many problems we had to overcome in order to sail on that first cruise with oxygen users. Here are just a few of the amusing things that happened on that historic first trip.
  • Cruising With Oxygen
  • Did you know that back in 1984 medical oxygen was considered hazardous cargo, and not allowed on cruise ships? We didn't, when we naively planned our first cruise for oxygen patients. Three weeks before sailing, when we rechecked with the cruise line, we found to our horror that the tourist agency had told them nothing about our plans to take oxygen on board. The cruise was off. Our tourist agents, eager not to loose the commissions from our group of 50, encouraged us to "sneak on board", or "run past the ticket taker at the last minute". Visions of our patients running up gangways pulling their oxygen, pursued by ticket agents, were not what we had in mind for this dream trip!
  • After inundating them with safety information, and a powerful letter from Dr. Petty darkly hinting at the evils of discrimination, we finally convinced the reluctant Azure Seas to allow us on board with oxygen IF we could get Coast Guard approval! Everyone was sure we could never budge that bureaucracy. But, miracles really do happen, especially when you work very hard to achieve them. In a frantic three-week period, all obstacles were overcome. On June 11, 1984, we sailed from San Pedro, CA to Ensenada, Mexico. For the first time in history, passengers with oxygen were not only allowed on board a cruise ship, but also allowed to sail! Oxygen dependent passengers have been cruising ever since.
  • Wonderful things began to happen in that ocean air. Patients who had hated upper extremity exercises in pulmonary rehab classes would play the one armed bandits by the hour, with nary a complaint. Those who "couldn't" handle stairs at home, managed very nicely, with their portable oxygen, to climb the half flight up to the casino.
  • Back in those days, portable liquid oxygen wasn't very common. All of our patients, however, were supplied with liquid portable systems for this trip. One of the other passengers, puzzled by the units pulled by our oxygen users, was heard to comment, "Look at all those little vacuum cleaners. This is the cleanest ship I've ever seen!"
  • One night at dinner, a white-faced steward anxiously hurried me and the other nurse, Maureen Finnerty, out of the dining room. He told us an oxygen unit was about to blow up, and the ship with it. Courageously, two stewards had dragged the unit to an outside deck while another had cordoned off that area of the ship. Maureen and I couldn't suppress giggles as we beheld the steaming oxygen unit, attached to a frozen portable, surrounded by a pile of "snow". Some hot water poured over the frozen connection remedied the problem caused by a patient, unaccustomed to using a liquid system. We complemented the men on their bravery, while reassuring them that hair driers would work next time if they didn't want to get the carpet wet.
  • The frozen portable was one of a series of events caused by our problem patient. Though accompanied by his "girlfriend", supposedly a nurse, he was always in some kind of mischief. He was a wiry little gnome of a man, probably smaller than 5'3", with long white hair and a long, stringy white beard. His favorite trick was to hide behind a potted palm, sipping Bloody Marys, while checking out the ladies walking by. He liked ladies. Whether it was the Bloody Marys, or his love of ladies, we don't know. But something prompted him to enter the ladies' restroom when he "had to go", as he put it later. Seconds after he snuck in, a shrieking, hysterical woman come tearing out. She tripped over the riser in front of the restroom door, almost falling in her haste to escape. She was babbling loudly about being invaded by a little space man with green tubes in his nose. (Did you know that oxygen tubes used to be green?) Our "space man" was confined to quarters until his "nurse" promised to make sure that all his beverages were non alcoholic and that he limited his rest room visits to those that said "Men" on the door.
  • Another amusing dinner episode occurred on our last night. Lights were lowered and waiter after waiter paraded in to the dining room, each carrying a flaming Baked Alaska to one table after another. Our group was last. Our Alaska's got about 100 feet away, and then stopped long enough for everyone to admire, if they had good distance vision. The flames were carefully extinguished before the non-flaming Baked Alaska came any closer to our tables. We gave our waiters an extra large tip to compensate them for their "hazardous duty" in waiting on our tables.
  • How times and attitudes have change! What hasn't changed is the fun people have when cruising. Some of our group found that oxygen was no deterrent to swimming, and learned to enjoy the pool. Others again discovered dancing. One of our group parked his portable oxygen on the deck and swung into Swing steps, joined by his gyrating wife. Their audience burst into appreciative applause.
  • Our entire group attended the Captain's Dinner Dance. They were resplendent in evening clothes and proudly posed, with their oxygen on, for the inevitable picture by the boat photographer. Who said being on oxygen was the end of a fun life? They didn't! They danced, carrying their own oxygen or having their partner carry it. It didn't matter; they were having fun! So, the next time those of you on oxygen go on a cruise, don't take it for granted. Remember the adventures of our pioneering group, way back in the dark ages of 1984, and enjoy!

  • Did this bring back memories of some of your experiences with oxygen? If so, write them down today and email your story to NHLEP@aol.com by September 15th.

  • Do you have a question about respiratory disease that has been bothering you? If so, feel free to write and ask us, either through our web site or by mail. We answer all of your letters.