For some patients diagnosed with a serious respiratory illness, the days when they could just pack their bags and hop on a plane or cruise ship seem to be over. Many patients—or their caregivers—worry so much about something going wrong with their oxygen source that they abandon any hope of ever being far from home.
Thirteen years ago, health care volunteers with the American Respiratory Alliance of Western Pennsylvania (ARA), based in Pittsburgh, challenged that assumption. They began organizing cruises for local Pennsylvania patients with serious respiratory illnesses, enlisting volunteer medical staff and an arsenal of portable oxygen equipment. Ever since, participants have been able to enjoy “Smooth Sailing,” an annual weeklong cruise, where respiratory patients and family members can feel secure that a portable oxygen source—along with trained RTs—is always nearby.
Carol Ann Kuczma, CRT, is the director of program and services at ARA and has been coordinating the Smooth Sailing program for the last 11 cruises.
“The program actually started in the eastern part of the state,” says Kuczma. “We had a nurse volunteer who was a pulmonary nurse, and she felt that there was some activity that people who had respiratory illnesses could do. She and Bruce Toben [an RT] got together and started the first cruise out of Allentown, Pa.” Two years after the first cruise, Kuczma read about the program in a journal and decided to get the western part of the state involved as well.
Have Oxygen, Will Travel and Educate
Through sponsors and volunteers, the ARA provides almost all the oxygen equipment that one would need on the cruise—from big tanks to portable concentrators. In addition, Kuczma enlists experienced RTs, nurses, and at least one physician to attend, ensuring that experienced respiratory personnel are on deck and on call, 24/7.
Kuczma stresses how participants truly travel as a group. She says, “It’s not a tour where you fly in, arrangements have been made for oxygen, and then you go aboard the cruise ship. We bring everything, including the people. We go from the eastern part of the state … and we also have a group that comes out of the western part of the state. Everyone meets at particular points where they can leave their cars.”
The chartered bus that takes participants to the port is equipped with a bulk liquid oxygen system that can refill everyone’s portable units. High-flow patients can be accommodated as well.
Once everyone is transported to the cruise ship’s embarking port—typically New York or Philadelphia—Smooth Sailors receive their own portable oxygen system and, if needed, a wheel chair. With their oxygen supply in hand, vacationers are free to explore and enjoy the ship, its activities, food, and exotic ports of call.
|Hitting the water, O2 and all|
The tour typically has a physician, five or six therapists, and perhaps four registered nurses, but that can vary depending on the size of the tour. Volunteers do not work full time, however. They also enjoy themselves with patients on board or in port, although someone always stays on board to help out with those attendees who choose not to go ashore.
In addition to recreational activities, the ARA offers several courses, usually offered on sea days. The subjects can include an overview of COPD, the importance of flu shots, inhaler use, oxygen usage, as well as updates on the latest oxygen equipment. Kuczma says they are well attended.
“A lot of [the patients] come to validate what’s happening in their own regimens or pulmonary rehab. Sometimes it’s just a refresher for them, but what’s nice is that they have the opportunity to talk to people throughout the week about similar subjects.”
Organizing the Tour
Even with 13 tours behind them, the ARA must make extensive preparations before each cruise.
Kuczma’s office is responsible for all the recruitment, marketing, and promotion of the program. She also makes sure that participants have all of their medical information submitted. At the same time, Kuczma must coordinate medical and administrative needs with the cruise company. Last, but certainly not least, she has to find and recruit all the volunteer staff and procure oxygen and other medical equipment that is temporarily donated for the cruise
The ARA’s travel agent reserves blocks of rooms so that all Smooth Sailors are near each other and the medical volunteers.
Kuczma explains, “[The volunteers] are loosely assigned to the people in our cabin area. So, we keep an eye on them and let them know who we are, and check on them.”
Travelers are also given a list of room numbers for all of the medical personnel. Other than room proximity, however, there are no specific assignments to any patient or groups of patients. Each member of the staff keeps an eye on the entire group, whenever needed.
Eligibility and Respiratory Disease States
Because the cruises are for the general public, anyone can go on them, regardless of whether they have a respiratory condition or not. Kuczma does not even limit participants to people in the Pennsylvania area.
Kuczma says that they have even adopted some travelers who were not part of the ARA tour, but had oxygen needs and worried about leaving the ship without enough oxygen. “We usually made friends with them and lent them a piece of equipment,” she says.
Tour participants often have COPD. However, individuals with pulmonary fibrosis and bronchiectasis have also attended. Of course, people with less serious conditions and who need oxygen only at night are welcome, as well.
Large O2 Menu
Smooth Sailors can enjoy not only the variety at the buffet, but also the variety of oxygen equipment that the ARA brings with every cruise.
All of the medical needs information is procured from participants several months in advance. The alliance finds manufacturers that will donate a range of oxygen and other medical equipment to accommodate the estimated number of patients, their conditions, as well as their preferences.
Kuczma says, “We’ll bring bulk liquid units and a variety of different portable systems, from HELiOS [Puritan Bennett, Pleasanton, Calif] and Spirits [CAIRE, Marietta, Ga] to the liquid strollers. We do bring some cylinders and M6s [oxygen cylinders], and we’ve also brought home-fill units that refill the little M6s on their own. Some people prefer that system because that’s what they use at home, and they’re content to do it on the cruise too.”
All the equipment is distributed in a central cabin that is used as the tour’s medical room. The room is staffed 24/7 by all the medical volunteers in shifts. Throughout the cruise, patients can come into the cabin and refill their portable, change cannulas, or get help with their equipment.
Smooth Sailors can also be given an oxygen concentrator for their rooms; high-flow concentrators are available as well. For exploring the port cities, the ARA provides some of the latest oxygen-conserving devices, although some patients may still prefer to carry liquid oxygen. In that case, patients usually take two units with them, just to be on the safe side.
In Case of Emergency
For any medical complications, the tour does bring its own physician, and there is also a small hospital on every ship. In addition to a variety of cannulas, the tour brings different medications, blood pressure equipment, masks, and Ambu bags.
A trip to the ship’s physician may cost a person $150 for a visit, so the ARA encourages travelers to seek advice and minor treatments from the tour’s physician volunteer first.
Learn more about traveling with oxygen—Read John Goodman’s article about high adventure in the February 2007 issue of RT, High Altitude Adventure.
The tour’s physician sees mostly minor medical problems, some of which are often unrelated to respiratory conditions. However, Kuczma and the medical team have also had to deal with some cardiac emergencies, such as congestive heart failure and patients needing adjustments to their pacemakers.
It is the ARA’s policy that any kind of significant cardiac problem be referred immediately to the ship’s hospital.
“We get them stabilized, but we generally contact the ship’s hospital, and they’re seen by [the ship’s] doctor. Then there’s usually an evaluation made whether this person is going to stay or leave and go to the hospital in whatever port we are at the time.”
Many cases seen by the tour’s physician are related to people enjoying themselves a bit too much. Kuczma says, “People get GI [gastrointestinal] problems and things like that. They normally wouldn’t have these problems at home, but because they’re surrounded by food 24/7, it’s like too much fun.”
How much? Costs Can Vary
The cost of the Smooth Sailing tour varies from year to year and depends on the destination and the choice of accommodations. Kuczma estimates that each person pays as little as $1,000 for an inside cabin to as much as $1,500 for a balcony cabin. The price includes food and beverages, however, as well as port taxes.
The number of paying passengers also determines the number of complimentary cabins that are given to the tour’s medical staff. Kuczma says, “Things like port charges and taxes are generally covered by the staff. There was a point where we actually paid for the cruises because we didn’t get as many comps. But as time has gone by and we’ve used different cruise lines, we’ve built a history with them, so we’ve gotten a little bit better deal.”
Kuczma believes that the Smooth Sailing program can easily be duplicated for patients in other parts of the country. She says the biggest challenge is procuring the donated oxygen equipment. The companies do get the equipment back, but it still takes time to find willing donors.
“When you’re starting to look for 30 to 40 wheelchairs and 35 to 40 concentrators, 18 bulk liquid units, that’s a pretty big outlay of capital equipment,” says Kuczma. Equipment donors, however, may be more willing to donate because they know their equipment will be in the hands of a professional.
“They have to know that there are people [on the cruise] who know how to use this stuff and that they’re going to take care of it,” says Kuczma.
Looking back over the last 11 years, Kuczma is proud of the Smooth Sailing program and has received many heart-felt thanks from participants and their families.
Tor Valenza is a staff writer for RT. For more information, contact [email protected]