Anne Roberts
Forum Replies Created
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Hello Charlene.
I have both grab rails and a shower stool, but a long tube with the concentrator turned up is my salvation. Sit down afterwards (I sit on the lid of the toilet!) to dry yourself , put on your clothes, pick up things that are on the floor and sort out the damp towels. There is no law that says these jobs have to done standing up! Don’t try and do to much for a little while until your lungs get “up to speed” as I say, ie recover a bit!
Happy showering x
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I have been feeling the same about having a shower, it is so flipping hard work! It is worth bearing in mind that the physics of warm damp air dictates that it contains far less oxygen. Basically you are breathing in more water and less oxygen. As I live in a low lying rather humid part of the UK I notice on a warm day that I find my breathing becomes more laboured. It is thought to concider if intending to fly to tropical areas where the relative humidity can reach 95% or more. Have a practice run in a hot steamy shower!!
Right…..back to steeling myself for today’s shower 🙁
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This web site is excellent, written by genuine pilots that dispel a lot of myths about commercial airlines: http://www.askthepilot.com/<wbr />questionanswers/cabin-air-<wbr />quality/
it could be that we may be a tad over anxious about the air quality in planes! Still a good idea to make sure to wipe everything with anti bac wipes tho.
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Hi Charlene
Yes the error message on the RHS was “could not post right now”. I thought my internet service had dropped off line so I had a look at my settings and they were OK but by the time I came back to my post it had vanished into the ether!. Cheers Anne
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Technology can be a pain, I have just typed in a long reply only to be told that it was unable to be posted , then it promptly lost all that I had typed in grrrrrrr! Lost the will to live at the moment will have another go later!
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While I may dish out words of “wisdom” sat here upon on my Granny seat, it is lovely to read all your thoughts…. lung transplant, wow I didn’t know that could be an option. But as spare lungs are rarer than hen’s teeth I think it would be selfish of me to deny the chance of a new lung for a younger person, mind you if it was offered I would go for it!
Here in the UK the special assistance for flying is incredible, nothing is too much trouble. It has to be as it is enshrined in law now. On my recent trip to the Canary Islands the airline I flew with did not bat an eyelid about taking my concentrator on board (and this was a budget airline not normally known for their generosity!). I had been warned to take a letter from my doctor to say that I need O2 24/7, they never looked at it all.
A note about my version of PF ie NSIP…. it is very difficult to diagnose esp in the early stages. I was originally diagnosed with IPF (gulp!) then CT scans eventually showed my lungs looked as though they were full of ground glass ie NSIP. As it is an autoimmune disease it is progressive and of course life limiting… though by how much is like saying how long is a piece of string! So I am taking my own advice and not stopping travelling. I have booked three holidays this year all within 4 hours travelling time in the car. No wings now but wheels, that will do me! I LOVE planning holidays (it is the geographer in me), my family reckon I like this better than the actual holiday, so I am a happy bunny when I am sat with my laptop planning away 😀
Thank you for taking the trouble to reply to my posts, it is great to be able share our experiences. As PF is such a rare condition it makes one feel less isolated as one does not normally normally bump into PF sufferers in every day life!
Happy holidays to you all x
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I have had a “fit to fly ” test in the past. They hook you up to a machine for 20 mins which provides the same oxygen level as a pressurised airplane cabin. If you don’t drop below approx 90% you are ok to fly. I was ok then but obvs not now. The Respiratory people said, just before I went on holiday in January, as long as I could provide oxygen at 2 times my resting rate it would be ok. I think my problem is that my version of PF (NSIP… don’t ask…. it is so rare even my doctor had not heard of it!) needs continuous flow not pulsed which small concentrators cannot provide. Def a case of me being over optimistic as to what my equipment can provide. No matter, I am now using my concentrator on car journeys as it came with a car adaptor…. very useful! And this means I am able to take holidays using the car, I have had my wings clipped I am afraid! As I am 72 and have lots of memories of our travels I am content with my lot ?
Many thanks for your post, and keep travelling as long as possible. No saying later on “if only I had done….” seize the moment while you can.
All the very best from this old Granny!
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The last time I flew wasl in January on 2 x 4.5 hour flights, my respiratory team thought I would be ok. I bought a incredibly expensive concentrator plus extra batteries for flying but I found it very difficult to maintain my sats. I was gulping oxygen at pulsed 5l the whole flight so it was gobbling up the batteries, very stressful…. then I did not feel too good for a few days after each flight. I need supplementary oxygen 24/7 ranging from 2.5 to 8l depending on what I am doing so i am very dependant on that tube! I looks as tho each person reacts differently to flying and the only way you can tell is by trying a flight. As I seem to have a flare up of my PF each time I go on a plane my family have banned me from flying, which on reflection, is probably a good idea for me!
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The last 6 min walk I did made me so ill that I was in bed for 2 days. When I have done subsequent tests I have refused to do more than 2 or 3 mins, I think they have got the message…. now as they just take my sats without supplementary oxygen. That tells them how much oxygen I need. So don’t stress do ONLY the minimum you feel comfortable with!
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I have had a chronic sinus problem for 50 years, so now I am on supplementary oxygen 24/7 for my version of pulmonary fibrosis (it is not IPF) my sinus’ are shot to bits! I know I shouldn’t but I have a quick squirt of a Sinex decongestant last thing at night so I can breath through my nose until morning. Nothing else gives me a respite from a blocked nose. Which is gonna give up first my nose or my lungs!