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Things not to do when traveling with O2 & sclero


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#1 Jeannie McClelland

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Posted 23 June 2011 - 11:10 AM

Well, get sick with something else is at the top of the list. :(

I had a planned vacation to the east coast to meet a new grandchild and to help surprise my mom on her 90th birthday. I planned to be gone a month and took lots of knitting. Halfway through the trip I got sick~

I ignored it for nearly a week, assuming wrongly it was hay fever (the whole east coast was yellow with pollen) or maybe a problem with mold (it never stopped raining). By the time a nurse friend dragged me off to the Urgent Care, I was in trouble. Drastic measures were called for, including putting me on O2 24/7 (at sea level?!) and loading me up with steroids and antibiotics. My pal, bless her, hauled me home with her, rather than taking me back to my mom's, which was a very good thing, otherwise I think the doctor would have stuck me in the hospital. Pays to have a retired nurse as a pal...

I thought about to turning myself in to the CDC (Centers for Disease Control) as an index case. (first known case). Yeah. For Mom's 90th birthday present, I managed to put her in the hospital with pneumonia. (She's better, thank all the powers that be.) I rewarded my friend by infecting her too. When she went to the same Urgent Care place she'd taken me, the waiting room was full of people "all sounding like we do" and the receptionist said they'd been seeing a constant stream of cases of the same thing, everyone suddenly down with something that went straight to the chest and made them very ill. When she saw the doctor, he said to thank me for bringing him so much new business~

Now all that was bad enough, but the real problem was that the loaner 50lb liquid O2 tank leaked all of its contents on the trip east and when I really needed it, it was empty! You would not believe the hoops we had to jump through to get a replacement. We eventually did, a 75-pounder, which lived in the back of my car and we ran the tubing up over the porch roof and into the bedroom window. So, the things to be learned from my lack of preparation and planning are:

  • Always know who your O2 provider will refer you to when traveling and figure your route out in, say, 4 hours driving from a branch, if possible,
  • Always know those branch phone numbers, including an emergency by-pass number to get to a real human,
  • Always know if the branch offices along your route have any special limitations, like not providing liquid O2, or only being open on the 2nd Tuesday of the month and whether the closest branch to a stop is still outside their delivery area (yes, it was),
  • And last, but not least, figure out who can help you move a big piece of O2 equipment. Silly me, I never even thought about asking the police station/emergency services for help. I got to the point of “gee, everybody I know here is either older, sicker, or blew out their back long ago” and just shut down~ Crying when you are streaming vast quantities of mucus and can't breathe through either your nose or very well through your mouth is not recommended and not a pretty sight.
  • :emoticon-crying-kleenex: NO-NO!
So I'm home, still fairly miserable, but no longer infectious. I'm resting lots and I might just recover from my pity-party too. But man, I missed you all.
Jeannie McClelland
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#2 Shelley Ensz

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Posted 23 June 2011 - 11:52 AM

Jeannie, I'm overjoyed that you are back!

:jump-for-joy::woohoo:

I am sorry your trip was such a disaster. I hope you are reconsidering plans for how to surprise your mom for her next birthday. Virtual balloons :balloons: might be better than real viruses, you think?

We certainly went through all the hoops for oxygen providers during all the years Gene was on oxygen (prior to his lung transplant.) I can't emphasize enough the importance of the items you mentioned regarding traveling with oxygen. It is certainly not easy and takes a ton of preparation and planning. I hope the tips you learned the hard way will spare someone else such grief the next time they travel with oxygen.

It's so great that you are back. I am sending lots of good thoughts your way in hopes that you recover from this soon. :you-rock:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 janey

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Posted 23 June 2011 - 01:24 PM

Jeannie,
WE MISS YOU TOO!!!!!! :crying: I knew you had a very interesting "vacation", but GOOD GRIEF! What a trip! So glad that you are feeling well enough to post and let us all know what is going on with you. Sorry that you are still not back to the health you were at before the trip, but as we all know, our recovery periods are 10 times (or more) those of a healthy person. So you take care of yourself. Keep getting whatever rest you need and we'll all just continue to hold down the fort while you're recovering. I want your book list when you get back because I'm assuming you are doing a lot of reading done.
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#4 debonair susie

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Posted 24 June 2011 - 08:53 AM

Oh dear...Our poor Jeannie :emoticon-crying-kleenex:

Here I was... (apparently alot of others here too) happy that you were on vacation, hoping that you weren't getting too tired out with doing all you had planned, yet the thought never even crossed my MIND that THIS would happen :sorry:

I am glad you are able to be at your home base, but wish you a healing that comes about in such a way that you are able to enjoy summer weather.

Sending very soft :emoticon-hug:s your way, Sweet Lady. (By the way, I am VERY happy that you posted too, but as Janey said, you just take care and feel better, as that's what we all hope for you :emoticons-group-hug:
Special Hugs,

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#5 Amanda Thorpe

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Posted 24 June 2011 - 01:35 PM

Hello Jeannie

Well it seems that extraordinary people have extraordinary vacations! :lol: Glad you're back but continue to take it easy, we've got it covered.

Take care.
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#6 Joelf

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Posted 24 June 2011 - 03:00 PM

Oh, Jeannie, Jeannie!! :crying:

Well, I suppose if you're going to do something, you might as well do it in style and if you've caught a nasty infection why not spread it around to friends and family!! ;) :sickly: I've just been on a short holiday, but I certainly can't compete with that!! :lol:

Thank goodness you eventually managed to sort out the O2 container but how typical that it would run out just when you needed it! :rolleyes: Joking apart, I'm so sorry that you've been unwell and it's lovely to have you back again, albeit not operating at totally full strength. I really hope you feel much better really soon; it's not been the same without you! :emoticons-group-hug:

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#7 annkd

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Posted 25 June 2011 - 07:39 AM

hi Jeannie- I am so sorry to hear about your getting sick while on vacation. That is just not right. It seems that it is common to get sick while getting to your destination or to get sick when returning. It happens to me all too often. I think it has to do with those wretched airplane recirculating air systems. Upon returning from the east coast I got some kind of virus that lasted for two months. it was a doozy!
I wish you all the best in your recovery. So happy you are back! - Ann

#8 miocean

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Posted 25 June 2011 - 08:05 AM

Jeannie,
I am so sorry you had to go through all of that. :temper-tantrum: Healthy people get sick when they travel, let alone someone with an autoimmune disease. You put out a lot of good points, though, as far as what you should think about, especially when it comes to oxygen. The same thing applies to medications. Always carry a list with you, and let people you are with know where you keep this information. I carry a list of my doctors (it is becoming longer and longer).

Just a little oxygen story, as an aside... When I was on O2 we had a new furnace put in. It is located in a space under the living room next to the garage where we stored the 200 lb. tank. A couple of weeks later we had to bring a plumber into the same area and he immediately noticed the smell of gas! They didn't tighten a connection on the pipes and we were leaking gas right next to the tank and a car filled with gas! Could have blown up an entire row of condos! Fortunately it didn't happen.

Hope you and everyone else feels better! :emoticon-hug: :emoticon-hug: :emoticon-hug:

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#9 Snowbird

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Posted 26 June 2011 - 05:00 PM

Wow Jeannie

What a vacation, not!! I'm thinking that you need a real one now!! I'm sorry to hear you got so sick and others too. Whatever you do, don't beat yourself up about the others getting sick, nothing you could possibly do about that and it sounds they are all back to good health now. Glad to have you back home and resting. Welcome back!
Sending good wishes your way!

#10 Sweet

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Posted 27 June 2011 - 12:42 PM

Oh man Jeannie, I'm so sorry!!! What a trip. I'm so glad you're back. xoxo
Warm and gentle hugs,

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#11 Jeannie McClelland

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Posted 28 June 2011 - 09:03 AM

Thanks everybody! Snowbird, I was tending towards a guilt trip over passing the infection on, you got that right. :blush:

I'm picking up speed daily, so I think I finally have whatever it was on the run. For awhile there I felt like something out of a science fiction move, one of those plague things. Y'know, where the only survivors are the folks in the bubble wrap suits? :P

Here's drinking (only tea, don't get excited) to a healthy summer (or winter, as the case may be) for all of us.
Jeannie McClelland
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#12 janey

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Posted 28 June 2011 - 12:58 PM

Jeannie,
Glad to read that you're picking up speed. What are you up to now - 1 mph? 1.5 mph or are you really rocking @ 2 mph? So glad that you are feeling better! :great:
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#13 Shelley Ensz

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Posted 29 June 2011 - 10:15 AM

Hi Jeannie,

I'm thrilled that you're turning the corner!

:emoticons-line-dance:

In hopes of meeting you in person some day, I am ordering a Hazmat suit (with oxygen, lots of oxygen) for you to wear then. One unit comes with a FREE supply of Antiviral Chocolate Bars. Would you prefer the kind with, or without, nuts?

Seriously, we all have to be careful about not feeling guilty about things that are truly not our fault, like carrying around plague pneumonia and giving them to our mothers for their 90th birthday present. Unless we did it on purpose and with malice aforethought, which I know for a fact would never even cross your mind, there's no need to take even a short ride on the Guilt Trip Express. I mention that because I way to easily jump on that train myself over even the dumbest things.

Now it's time for more happy dancing! Everyone can join, even the brand new members who haven't figured out how to get the Sclero Happy Dance emoticon in their messages yet, or maybe those who don't even know who Jeannie is. She's our forum leader, and we'd follow her anywhere...even if we have to wear a Hazmat suit to do so!

:emoticons-line-dance:
Warm Hugs,

Shelley Ensz
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Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#14 Joelf

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Posted 29 June 2011 - 12:04 PM

Here's a Sclero Happy Dance for Jeannie!!! (Hazmat suit at the ready!!! ;) )

:emoticons-line-dance: :emoticons-line-dance:

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