Specific Vacation Plans Discuss your travel plans with your doctor. Are there certain activities that should be avoided? o Swimming o Contact sports

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1 Traveling with PH: Medicatin and xygen management Prtland, Ore PHA n the Rad Sessin Descriptin: Patients with PH need careful planning t have a wnderful travel experience. This sessin will discuss hw t prepare fr travel t have a safe trip. Oxygen therapy and safe medicatin management are essential fr many PH patients wh are cnsidering travel and lng trips away frm hme. Panelists will review practical cnsideratins during travel as well as determining xygen requirements fr travel and hw they can be met with varius devices. Panelists will als discuss hw t knw hw much xygen t wear when traveling n an airplane r when functining at higher altitudes. The sessin will als give an verview f the High Altitude Simulatin Test (HAST) which can be helpful in determining xygen requirements during their travel planning. Learning Objectives: At the end f this sessin the participant will be able t: Prepare fr safe travel with PH medicatins and xygen Understand why xygen is an imprtant part f PH management Discuss hw xygen need is determined and what ptins are available Describe xygen safety, tips and tricks t living with xygen therapy Understand issues pertaining t traveling with xygen Understand what a High Altitude Simulatin Study is (HAST), what the purpse is and hw the test is perfrmed. Overview Discuss yur travel plans with yur dctr well in advance. Tell him r her where yu want t g, what yu plan t d, hw yu plan t get there and hw lng yu plan t stay. Ask him r her if there are any ptential prblems with yur plans. Request a letter frm yur dctr explaining yur medical cnditin and need fr specialty medicatins, including need fr infusin pumps, nebulizer devices and xygen use during travel, as well as yur specialty pharmacy cntact numbers, fr emergency assistance. Yu need t be able t trublesht all f yur equipment r travel with a capable, trained cmpanin. Be up-t-date with yur immunizatins. Obtain travel/evacuatin insurance if traveling internatinally. Yu shuld search nline fr PH specialists at yur destinatin and alng yur rute if yu are driving. Keep their cntact infrmatin in case yu have an emergency. Yu can find PH specialists by: Asking yur health care team Accredited PH Prgrams: All Physicians Cnnected t PHA (have nt necessarily been reviewed by the PH Care Centers Prgram): Yu need t be respnsible fr making yur wn travel arrangements. Patience, perseverance and planning/preparatin are key. Specific Vacatin Plans Discuss yur travel plans with yur dctr. Are there certain activities that shuld be avided? Swimming Cntact sprts

2 Traveling with PH: Medicatin and xygen management Prtland, Ore PHA n the Rad High impact activities Plan activities t avid dehydratin, lng lines (standing) and temperature extremes. If traveling t an amusement park, be familiar with park s rules. Plan yur meals t avid eating snacks r restaurant fds high in sdium. Plan fr a strller r wheelchair with ample carg space t manage yur equipment. Imprtant Cnsideratins Planning Ahead Cntact yur specialty pharmacy. Yu can never be t early! Ntify yur pharmacy f yur destinatin, and ask fr assistance. Carry yur specialty pharmacy tll-free number with yu at all times. Carry emergency instructins; e.g. hw t use pump. If yu are traveling ut f the cuntry, yu may be able t get an extended supply f medicatins (mre than a mnth supply) t avid shipping issues. Keep MD name, crdinatr, and phne number n hand. Lk up PH centers r tertiary care hspitals clse t yur vacatin spt r alng yur travel rute. Yu can als ask yur PH care team r prvider the name f a PH specialist in r arund yur travel destinatin. Wear medical alert jewelry. Infrm and prvide yur traveling partners f yur emergency cntact infrmatin.n Pack yur PH meds in yur carry-n, nt yur checked bag! Cnsider having a partner separately carry extra critical medicines. Carry yur meds in their riginal pharmacy bttles with yur dctr s letters. Success with PH Medicatins What Can Yu D? Always keep an accurate, written list f all medicatins that yu take and prvide fr all healthcare prfessinals invlved in yur care. Make sure yu include all dses, rutes and hw ften yu take yur medicatin. If yu are n a pump medicatin please knw the dse and nt just the pump rate. Include prescriptin, ver-the-cunter and herbal r dietary health supplements. Cnsider using medicatin bxes t help with rganizatin f dsage regimens. Write dwn travel questins and bring t yur clinic visits. Keep a lg f any prblems r pssible side effects that yu may have experienced. Anticipate refill needs; alert yur healthcare prvider in advance if yu need t have prescriptins renewed while traveling t avid missing dses. Make sure yu can get yur medicatin while traveling: Call yur specialty pharmacy if yu need yur prescriptins shipped t a different address. It is als recmmended that yu cunt yur medicatins and days yu will be away frm yur pharmacy if they d nt ship. Yu may need t request a vacatin disbursement f medicatin. If medicatin will be delivered t yur hme, be sure t arrange fr a family member r neighbr t take the package inside fr yu. Advanced therapies (prstacyclins): Keep cpy f the dsing sheet frm specialty pharmacy. Vial cncentratin (Remdulin )

3 Traveling with PH: Medicatin and xygen management Prtland, Ore PHA n the Rad Pump used: IV r SQ Dsing weight, dse, final cncentratin, base slutin (e.g., nrmal saline vs. ther), rate Maintain back-up supplies (e.g., cassettes) Letter frm health care prvider regarding supplies when traveling (airlines) Try t call the airline well in advance t determine what their regulatins are fr traveling with medicatin and what dcumentatin they require. Give the dctr s ffice fair time t get this infrmatin t yu and the airline. Request the bulkhead seat whenever pssible when taking an airline flight. The bulkhead seat is usually the seat that separates first class frm ecnmy class. There may r may nt be additinal cst. This seat usually has mre rm and clse t bathrms (If yu are traveling with a prtable xygen cncentratr, it will need t be stred under the seat in frnt f yu s yu will nt be permitted t sit in this rw.). Oxygen: Why D I Need It? Lwer xygen levels can cause further narrwing f the bld vessels in the lungs, leading t increased pulmnary artery pressure and increased wrk fr the heart. While there can be many signs and symptms f lw xygen levels (shrtness f breath, fatigue, chest pressure, leg cramps, lightheadedness, dizziness, passing ut and/r fingers and lips turning blue), it is imprtant t knw that a persn may have n bvius signs r symptms while their xygen level is lw. Wearing xygen can help by decreasing the pressure in the arteries and imprving symptms. If xygen is needed, it is just as imprtant as any f the medicatins that are used t treat PH. Hw D Yu Decide Hw Much I Need and When I Need t Wear It? Levels f needed xygen and guidelines fr yur xygen regimen will vary frm ne individual t anther. While sme peple need t wear it thrughut the night, thers may just need it during an exercise. It is a spectrum, but mst wh need it need t wear it 24/7. Oxygen flw rates can range frm 1-6 liters per minute. Sme peple even require xygen as high as 15 liters per minute. Often the xygen flw rate needs t be increased with exercise. A pulmnary rehabilitatin prgram is a perfect venue in which t safely determine exactly hw much supplemental xygen yu need. A pulse ximeter helps determine when and hw much xygen is needed. The gal is t keep the xygen saturatin level greater than 90%. Medicare and Oxygen: Insurance cmpanies typically fllw the Medicare guidelines, which state that: Oxygen saturatin level must be 88% r less t qualify fr xygen. The test is perfrmed with the persn sitting still withut supplemental xygen. If the xygen saturatin is 88% r lwer while at rest, xygen is then added t bring the patient s saturatin level t 90%. In this case, the patient wuld require supplemental xygen at all times (rest, exertin, and sleep). If the xygen saturatin level still remains greater than 88% withut supplemental xygen while at rest, tw further tests shuld be dne ximetry during exertin and an vernight pulse ximetry. The xygen saturatin level must drp belw 88% fr mre than 5% f the test time t qualify fr supplemental xygen during sleep.

4 Traveling with PH: Medicatin and xygen management Prtland, Ore PHA n the Rad Once the xygen saturatins are btained, a prescriptin is sent t an xygen cmpany alng with clinical ntes frm the visit and insurance infrmatin. The xygen cmpany then sends frms back t the prvider t sign. After that is received, the xygen can be delivered. All infrmatin needs t be with the xygen cmpany within 30 days f the date f testing r the prcess starts ver. Only a few xygen cmpanies have the Medicare cntract, which may change n a yearly basis. Types f Oxygen Therapies: Mst wh use supplemental xygen will have a cncentratr at their hme, and usually a large xygen cylinder t be used if there is a pwer utage. Prtable xygen cmes in cylinders, liquid xygen cntainers and as prtable xygen cncentratrs. Cylinders cme in several sizes and sme may be filled at hme by the patient. Oxygen is prvided by either cnstant flw r a pulsed-dse with the use f a regulatr that helps t cnserve xygen. Nt everyne can maintain their xygen levels high enugh with the pulsed-dse devices, especially thse n mre than 4 liters per minute. Prtable xygen cncentratrs cme in a variety f sizes and flw capabilities. They run n batteries which must be recharged frequently. Traveling with Oxygen: Part f the gal fr the treatment f PH is t help a patient becme mre active and able t enjy activities such as traveling. Wearing xygen requires extra steps in preparing t travel. This prcess shuld start at least 6 weeks prir t the date f travel. The Travel Cmpany Once yu knw yur travel plans, it is recmmended that yu check t see what the requirements are fr yur specific air r cruise line, train r bus as their rules and regulatins vary. This infrmatin is usually available under the accessibilities: area n their websites. Mst cmpanies appreciate at least a 48 hur ntice f travel with POC - a phne call is best. The Oxygen Cmpany: Request a FAA apprved prtable xygen cncentratr (POC) fr the trip. There is usually a fee (may be cvered by insurance). There is usually high demand fr POCs, s get the request in early! Have a back-up POC and battery (150% f the duratin f yur flight, plus grund cnnectin time). Leave hme with fully charged batteries and keep plugged in whenever pssible. Pwer surce may r may nt be available in the plane, train r bus. Arrange fr xygen tanks delivery if needed t be sent t yur destinatin, are available n the cruise r at intervals during land travel. The cmpany can help yu arrange fr xygen pick-up r delivery frm anther surce at yur destinatin, if needed. Ask fr an xygen supplier at yur destinatin in the event yu have a malfunctin r ther xygen emergency. Yu culd ask fr a referral t a cmpany at yur final destinatin r cities alng yur rute and give them permissin t share infrmatin if necessary. Many cruise lines will prvide xygen while thers will allw yu t bring yur wn xygen. If yu're bringing yur wn, yu ll want t calculate hw much backup xygen

5 Traveling with PH: Medicatin and xygen management Prtland, Ore PHA n the Rad t bring fr the duratin f yur trip. If nt, yu shuld arrange fr xygen pick up at varius prts. The physician s ffice: Yu must have a physician cnsent frm (btained frm cmpany website r printed n physician s letterhead) t travel by plane, train r ship. Keep this letter n yur persn during travel. This letter is t include: Capability t perate the POC: Recgnize and respnd apprpriately t its alarms. When the POC use is necessary (taxi, take-ff, in-flight, landing). The maximum flw rate crrespnding t the pressure in the cabin under nrmal perating cnditins (cabins are pressurized t an altitude f 8,000 feet). Often yur xygen prescriptin may be different during air travel than when n the grund. if land travel t a place f higher altitude. Please verify exactly what yu dctr recmmends prir t travel Keep a current xygen prescriptin with yu fr emergencies. Other cnsideratins: If yu are n BiPAP r CPAP, yu shuld bring yur machine and assciated supplies with yu in yur carry-n luggage It s imprtant t stre yur xygen ut f direct sunlight and away frm any heat surces. N ne shuld smke near xygen in use r stred Hw d yu knw hw much xygen t use when traveling n an airplane r at higher altitudes? What is a HAST study? High Altitude Simulatin Test Diagnstic test that calculates a patient s xygen needs fr traveling r while being at a high altitude Determines if supplemental xygen is needed Hw much xygen is needed at rest and with exercise What is the purpse f a HAST study? T identify patients at risk f develping lw bld xygen levels during airplane flights, r wh may becme at risk due t functining at higher elevatins Is additinal xygen needed abve the current xygen level? Why airplane cabins are pressurized Airplanes usually travel at arund 30,000-40,000 feet. Cabins are pressurized t arund 8,000 feet. HAST test simulates being at 8,000-9,000 feet. The higher the altitude, the lwer the xygen percentage. 8,000 feet = apprximately 15% xygen. Hw is a High Altitude Simulatin Study Perfrmed? (It is perfrmed using a 15% xygen mixture that simulates being at apprximately 8,000 feet) The baseline xygen level is recrded. Baseline xygen saturatin and HR is recrded.

6 Traveling with PH: Medicatin and xygen management Prtland, Ore PHA n the Rad A baseline Arterial Bld Gas (ABG) is drawn. A 15% xygen, 85% nitrgen mixture is breathed in fr 20 minutes. Alng the way, a decrease in xygen saturatin is mnitred and adjusted (by adding xygen) t keep it abve a certain level. At the end f the 20 minutes, anther ABG is drawn. Fr 10 minutes the patient exercises and is mnitred again fr decreases in xygen saturatin and the supplemental xygen is adjusted accrdingly. The final xygen level needed at rest and with exercise at high altitude is recrded. Mst airlines have a list f apprved prtable xygen cncentratrs by the FAA. Tips fr Wearing Oxygen: Humidificatin can help with nasal dryness, sre nse, and nse bleeds. A humidificatin bttle can be added t yur hme xygen system. Saline nasal gel can be applied frequently in and arund the nse. It may als help sre areas behind the ears. A rlling backpack can help with carrying heavy xygen tanks and supplies. Take Away Message: Plan in advance t travel, d yur research and get the letters and frms filled ut early. Be prepared fr emergencies when traveling. Being n xygen shuld nt stp anyne frm traveling, but advanced preparatin is a necessity! Additinal Resurces: