Is it okay to fly with scleroderma and pulmonary fibrosis?
Posted 16 January 2011 - 12:37 PM
I am unable to sleep tonight as I have a cold and chest infection and am in absolute agony. It feels like my whole body just wants to shut down I am so exhausted. No matter what I do I just can't seem to get comfy and the painkillers seem to be doing nothing.
Anyway I have just had an invitation for my children and I to go on holiday with friends but I am not sure if I can fly and was wondering if anyone had any ideas. I am going to ask my health care team only I don't see them for two weeks yet!
On one hand I am finding it really exciting and on the other it is actually very daunting as we haven't been on a holiday for over 3 years now due to my health and the last holiday wasn't abroad. It was a six hour drive the kids loved it. Me too only it took me a month to get over it. to you all.
Posted 16 January 2011 - 03:31 PM
I'm very sorry that you are in so much pain. That can be so exhausting, not only physically, but emotionally. I hope you can get some effective relief soon. In reference to your question, please consult your doctor for the final decision. I do have some questions and comments. Do you require supplementary oxygen and if so, do you require it 100% of the time or just when moving/exercising? If you don't require supplemental oxygen, then I personally don't see any reason why you couldn't fly. I require O2 when I move around too much or too fast and when I sleep, so I could fly with no problems. Just in case, I do have a FAA approved portable concentrator that can get me to and from the gate, but I haven't flown since I bought it. Some O2 rental companies will set you up with a concentrator at your destination, if you can fly without O2. Lots of unknowns. If at all possible, I hope you get to go on your vacation. Continuing to live is so important and having fun with friends and family is worth the post-exhaustion.
ISN Support Specialist
(Retired) ISN Assistant Webmaster
(Retired) ISN News Director
(Retired) ISN Technical Writer for Training Manuals
International Scleroderma Network (ISN)
Posted 16 January 2011 - 05:00 PM
I fly with an approved portable O2 concentrator, not often and only about 4 hours at a go so far. Cabin pressures are set at about 8,000 ft (and if you are normally at sea level, that's pretty low pressure) and that can cause problems with people who normally don't need O2, but have some kind of lung issue - it's called altitude induced hypoxia. So it's something you really need to ask your doctor about. Also if you have any air trapping in the lungs, the lowered cabin pressure can cause problems (the trapped air expands and can rupture the tiny air sacs). Air trapping is becoming an issue with me and on my last flight I had chest pain, which has never happened before. So, before my next flight, I'll talk to my pulmonologist and see what she has to say. We have a chance to get back to Europe this year and if there is any way I can do it, you'd better believe I will!
I'm with Janey. You can't live life worrying about being sick. Usually there are work-arounds for almost every situation. It's one of those "proper planning and preparation prevents poor performance" things. Get expert advice, do your homework, and then go for it!
Bon Voyage and Happy Holidays,
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network
Posted 17 January 2011 - 01:22 AM
Sorry to hear that you're in so much pain and discomfort. Hopefully by the time you see your health care team your cold and chest infection will have eased off a bit and they'll be able to help you.
I can sympathise with you as I seem to spend most of the winter going from chest infection to chest infection with a barely a break between them. Roll on the Summer!!
You've has some really good advice from Jeannie and Janey to which I'm afraid I can't add anything but I do hope that you're able to go on holiday with your children and that you have a really super time.
ISN Assistant Webmaster
ISN Sclero Forums Manager
ISN News Manager
ISN Hotline Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)
Posted 17 January 2011 - 02:44 AM
Thanks for your replies. Yes I am on 2 liters of oxygen when moving and sleeping or when I get infections and my sats drop. I'm going to try to get there one way or the other. If I can't fly then we are going to look at perhaps driving, although it will be one long drive.
Will keep you posted.
Posted 17 January 2011 - 12:10 PM
I am sorry to hear you have so many chest infectons like me but without sounding horrible it is also a relief to find somebody else who suffers many like me I don't feel so isolated now. Hope you are chest infection free at the moment.
Hopefully we will have a good summer now after such a severe winter and the chest infections will be few for us both. Here's wishing will chat again in the future take care and
Posted 17 January 2011 - 04:53 PM
I hope you are able to work out something that allows you to travel but still leaves you in one piece. I'm a little less intrepid than some of our other members when it comes to traveling. I have had to avoid or cancel many trips, even some fabulous offers of a free and lovely vacation place to stay in Florida in the wintertime. You know its bad when a Minnesotan can't even pull that one off.
Instead, we've focused on vacations close to home. This gives us a break while also leaving me with enough energy to enjoy the time away. For some reason, travel tends to knock my socks off, so even when I have traveled, I have had to keep a close eye on every aspect of my health and warn any traveling companions to expect me to likely have to indulge in significant breaks and naps. I also try to add at least one day of rest at my destination prior to having to do anything, and another day or two at the end, to just rest (nothing else) before returning home.
Any sort of stress seems to take a huge toll on me, either sooner or later, and even highly enjoyable traveling is a stress. Last year, when my husband had his lung transplant, I checked myself into a hotel down the block and just slept for a few days, with only brief forays to visit him. I'm so glad I took the time to recover right away as then I was still in mostly one piece by the time he got out of the hospital (and when the real caregiving work began).
So, as you are contemplating the trip, also contemplate what you can do to make it easier for you to bear and don't hesitate to modify the plans so that you get the rest and care that you need, along the way. Think each step of it through, such as ordering a wheelchair to get through the airport, oxygen supplies along the way, time carved out of the schedule for you to rest, meal plans to keep your energy from flagging too much, and a very sensible plan of activities. Let the healthy folks chase around all they want!
While they are out and about, you could stay in as much as necessary, maybe working on photo albums for the pictures they take to share with you. Let us know what all you come up with, okay?
Here's many wishes for a happy vacation time for you and your family!
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099
The most important thing in the world to know about scleroderma is sclero.org.
Posted 17 January 2011 - 09:23 PM
Just reading all these posts and Shelley's one has raised a comment from me. We do not travel a great deal these days. We did a lot when we were younger and had no children so there are not many places we haven't been that we would like to see. However in 2002 we met some people from Vancouver Island while we were in Australia - OZ hardly counts as overseas when you live in NZ!! In 2004 these friends came to NZ and we showed them around and in 2005 we went to visit them and to do an Alaskan cruise. By the time we came to leave home my husband had developed Plasmacytoma and had completed a course of Radiotherapy which together with the Tumour virtually destroyed the left side of his pelvis. We were not put off though (fortunately our friends are both medical doctors) and set off with him on crutches and using wheelchair assistance wherever possible.
Travelling by air with a wheelchair dependent passenger is the BEST experience I have ever had while travelling. I was still able to push him around a bit, but everywhere we went I was offered assistance. Going through busy airports is a breeze when a gorgeous young man takes control and whisks you down back corridors, into cargo lifts and then to the front of the queue for processing. Before you know it the luggage is on a trolley and you are in a taxi and on the way to your accommodation. If I was on oxygen and contemplating a holiday I would not hesitate to choose wheelchair assistance.
I know I am a bit odd (peculiar, call it what you will) but I have no qualms about accepting assistance. I have a friend who WILL NOT come with us on girls' day out excursions because she cannot walk very far, and no amount of offering to organise a wheelchair and a disabled parking permit will persuade her. I can't understand it!!
The fatigue is the worst part, don't I know, 2 busy days last week needed 3 days doing almost nothing but rest to recover from, but if you program rest days in then a good holiday is definitely achievable.
So, I say, consider your options, and as long as your medical team don't forbid it, take all the help you can get and go for your holiday.
Posted 19 January 2011 - 06:20 PM
I do have a wheel chair and you sound just like me, in the way things affect you cause it also takes me days to recover even after just one good day but hey these things are sent to try us and as my nan always said to me where there's a will, there's a way. So fingers crossed.
Will keep you posted.
Posted 19 January 2011 - 10:36 PM
Seems you have been given plenty of advice regarding air travel. I do hope you can make the trip.
Scleroderma Australia have spent twelve months putting together a brochure which is on our website www.sclerodermaaustralia.com.au This site is linked to this ISN website. The reason we did this brochure is that this question comes up so often. Many of our members who have travelled put their heads together with lots of tips and it was then sent to a respiratory specialist and rheumatologist for approval.
Please feel free to download this brochure.
Posted 30 January 2011 - 01:06 PM
I have traveled with scleroderma many times over the past six years, recently returning from a wonderful two-week visit to Mexico, the longest air flight, 5 hours. I have been on 2 hour flights many times. I have traveled with oxygen and made arrangements for a tank from my oxygen provider in case I needed it but I didn't have to use it. I do get wheelchair assistance as the airport I use is gigantic and there is no way I could walk to the gates and you do get whisked right through all the gates and customs making things very easy for you and everyone traveling with you.
I make sure I take it easy on the trips. For the past six years I really had no choice because I was on dialysis and many of my days were shortened for treatments, hours sitting in the chair, and exhaustion afterwards. On this trip to Mexico (just returned last night) I made sure I rested, took naps, and didn't overdo it. Today is just a hang-out, catch-up day and then back to life as usual tomorrow.
By the way, I found Mexico to be as beautiful as I remembered, safe and VERY clean. I was in Los Cabos, a tourist area, and live in a tourist area in NJ. My town could learn a lot as far as cleanliness on the beaches and bathrooms from Mexico!