travel tips for lung problem patient

[JBJBJB]

I am wondering if I need oxygen supplement on the airplane when I travel to Sydney, Australia? I have pulmonary fibrosis/hypertension and have some difficulty breathing from time to time. Currently I do not use oxygen. But I heard it would be better if I could use it on the plane. It's going to be a very long flight from Chicago to Sydney, stop at San Francisco….. Does airline provide oxygen in case I'd need it?

Any suggestions?

[steph-sclero]

Hi JBJBJB,

I always fly with oxygen and it does make a difference. I was told flying at high altitudes (for us) is like climbing high altitudes without oxygen for normal people. My doctor says anybody with heart/lung problems should seriously consider oxygen. Our insurance company covered 80% of the cost. It was $150 per flight. I fly with 2 liters per minute.

Hugs,

Steph

[Cheryl F]

Steph,

Could you share with us how you get the Oxygen ordered.  Is it provided by the airline and you pay them to have it set up?  I would like to understand more about this.  I have spoken to several Scleroderma patients lately that want to consider going to Dr. S in Iowa or Dr. T in Boston but they are concerned about flying for this reason.  I would like to be able to point them in the right direction on how this might be done.

Cheryl

[JBJBJB]

Steph,

Did you order it through the airline or through the doctor's office? Did you have to sit in a special area on the plane? I don't know if I have connecting flights or not…. hopefully I don't have to switch planes.

JB

[kramstine]

Hi JB,

I have SD and severe lung involvement – use oxygen daily 8L all the time, but a few years ago it wasn

[steph-sclero]

Hey Guy's,

You first contact the airline and ask for the medical dept/desk, explain that you require oxygen to fly, they will ask for your doc's info (name/phone number/fax number), your flight number, they will then fax your doc a few pages of forms to fill out, your doc fills them out (usually the doc has a charge for filling out papers), doc then faxes forms back to the airline, the airline med. team (includes a doc of their own) okay's your doc's request, the airline then calls you back for your credit card info. to pay for the oxygen ($150 per flight in Canada) then you're all set. On the day of your flight (arrive early as they board you first) you verify your oxygen order at the flight desk and again at the boarding counter, they will call you and your party when it's time to board, the airline attendant will ask your seat number, they will then put the long metal box containing the oxygen tank under the seat in front of yours (request this or they may put it in the seat beside you and your partner will have  to sit one seat over from you (however if you require all your leg room due to pain/stiffness let them put it in seat beside you). The box is long enough that it will be half of your feet room as well as under the seat in front of you, I put my feet on it. The stewards will check with you from time to time after they set the oxygen at the required rate by your doc (usually 2 liters per minute but maybe as much as 4). You take the nose prongs off when you land and they will come and turn it off unless you know how to. You will be fine to go to the bathroom without it as it's just a brief amount of time. You should book your flight before setting up your O2 so the airline has a flight number to book everything under. As soon as you get your receipt (ask them to email it it's faster) you can go ahead and file your claim with your private insurance company. The insurance company will call you with questions like 'are you on O2 daily to which you will tell them no however due to your disease you require it to fly. Please send a standard script requesting O2 with your airline O2 receipt so the insurance company can see this was doc ordered (ask your doc for one for insurance purposes). Don't let you insurance company tell you any bull like 'well if you needed it to fly wouldn't you be on it all the time. Explain that with your pulmonary hypertension your heart and lungs couldn't take the strain at such high altitudes but that it is not an issue at regular altitudes (they know this and have seen this kind of claim a million times but they're always hoping you won't know what you're talking about and they can intimidate you out of a reimbursement (usually 80%). Hate insurance companies! If you have to switch planes (I did) it's all the same routine again (the airlines are very good to take excellent care of you). If you need a wheelchair have your doc request that on your O2 paperwork, this way the airline will make sure you get one at the airport upon leaving and one will be waiting when you land (as sometimes they're all taken). If it is a big airport you qualify for a shuttle to your boarding counter, the airline will also have an attendant push the wheelchair for you unless you want someone in your party to do it. Also being in a wheelchair means you don't have to wait in the long tiring lines for customs etc., they put you and your whole party through a special line for the handicapped which moves a lot faster. In a wheelchair you are also treated with a great deal of care by all airline/airport staff which makes your travel a lot more pleasant and is all round easier on you. Hope this helps, feel free to ask anything else that I left out.

Hugs,

Steph

[oit440]

Steph,

I've been under the impression that people with PAH were either discouraged to fly or not to fly depending on the severity of the lung involvement. I have SD following radiation treatment in '97, diagnosed with PAH in 2004, and is now WHO 3. No fibrosis, mainly interstitial tissue involvement. I'm on oxygen most times. I used to see Dr T but travellng by car from florida got to be too much…..being able to fly would have made a world of difference. Also back on Minocin 100mgs daily and will probably do 200mgs MWF. Had a lot of skin sensitivity with 200mgs daily prescribed by Dr T. I now work with a rheumo at mayo in Jax. Thanks for posting your info on flying.

[JBJBJB]

Steph,

Thanks for the helpful detailed information. We called United Airline. They said it would be $100 for each plane, which means from O'Hara to SF, and from SF to Sydney would need to switch plane twice, coming back it would be the same. It will be total $400 plus TX. I hope this information is correct. I will post if I find more information on it.  JB

 

 

[JBJBJB]

Oh well, I called my pulmonary specialist about prescribing oxygen for my travel. His nurse said I must go to his office to get a 6 minute walk test. If after 6 minutes walk, my oxygen level would fall below 92, then I will need oxygen. Last two recent walk test I scored 98 and 96 with a lot of shortness of breath. I don't think I can be below that within 2 months….

Oh well….if on the plane, the air quality is not good, I know I cannot breath well….

This disease makes everything so hard.

Sigh,

JB:doh:

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