Re: [CYSTIC-L] Adventure Trip is all Set...Read ASAP

[Guest guest]

Hi

Ok here are the answers to the questions :

Who is arranging and organizing this trip? YOUNGLUNG Support Services , INC.

we are registered with the NC Secretary of State as a non-profit.

Will there will be medical person along for the trip?Yes...I am a nurse.We

are also getting nurses ,RT's and hopefully a Doctor that works with CF

Patients. I have a long line of medical personnel that wants to attend.

RT's,PT's,RN's,etc.

How are people pre tx suppose to do this type of thing? People do NOT have to

do all these activities.It's up to the person if they think that they can

attend.I do not want to EXCLUDE anyone b/c they are on 02.That wouldn't be

fair. If I were to do that I wouldn't be able to attend myself.Not all people

on the TX list are even on oxygen. There is electricity throughout the camp

so concentrators can be hooked up.Nebs will be done and volunteers ( trained

in CPT ) will do any CPT that needs to be done. We will also have travel nebs

with us at all times. I am on oxygen myself 24/7 ( FEV1 of 26% ) I will have

my 02 in a backpack and a concentrator I will hook up to at night.

This sounds like a fabulous trip ,but I have so many questions.

No Problem...I want to make people understand I am taking every effort

Are pre and post lungs going to room together? I don't think any post

lung tx person's surgeon will allow that.  Whoever is in charge did they get

an okay from medical people that they can do it? There are seperate rooms

....POST-TX people will room in 2 areas....The cabin has 2 stories...Post

downstairs...Pre-Upstairs. No patients with Pan -resistant bugs, MRSA/ORSA

cultured within 2 years, or any history of B. Cepacia can attend. Also when

people contact me for information I have a BOOKLET of information they need

to fill out...with a letter to their docs....plus I have spoken with several

CF Physicians to get the ok.

Also, the time of year.  NC is terrible hot and muggy during that time of

year, I know these are moutains, but who is carrying the supplies, like tons

of water.

First of all the Trip is sponsored by USA Raft and Mountain Adventure Guides

which are huge professional companies that do this daily. We will have

specially designated vehicals that will carry all equipment, supplies, water,

Juice,etc with us to all locations. I have made sure that the camping

location has HOT water, Electricity ( several outlits in every room ). We

will be grilling and USA Raft and M.A.G will also provide meals. All

Equipment is provided by USA Raft and the MOUNTAIN ADVENTURE GUIDES.

Also we will be staying less than an hour from Mission St. ph's Hospital

where a large CF Center and is well known for it's Cardiac unit.

Plus you do not want to raft on these rivers at other time sof the year b/c

the water would be WAY to cold.

Becki

YOUR FAVORITE LilGooberGirl

YOUNGLUNG EMAIL SUPPORT LIST

www.topica.com/lists/younglung

Pediatric Interstitial Lung Disease Society

http://groups.yahoo.com/group/InterstitialLung_Kids/