Re: tests at National Jewish

[Guest guest]

, I too had all the tests they could think of. The swallow one is to see if you are swallowing correctly. I actually had a little leak into somewhere from my throat from the acid. You don't want anything getting into your lungs. It was nasty but not all that bad. It is neat to watch it on the screen. Don't be afraid of anything they do to you... It is all to help you--just a bit scary.I also saw the transplant Dr. in the second year I think it was, Just talk to anyone and everyone and learn as much as you can.. This board is the best information you'll find. Your Dr. should answer questions for you with no problem.Take Care of you.

Love & PrayersPeggy, IPF 2004

Ok I got my schedule for Feb 1-5 when I go to National Jewish and I'm just wondering why they are doing some of these tests. Like the The Barium Swallow Study, and the Talored Barioum Swallow Study. Ok you know what, I know that I have acid reflux, gerds, what ever you call it. So really what is this going to tell me about my lung disease? The reason I am going is that it was suggested that I see and ILD specialist, before I go for transplant evaluation. which my pulmo dr. wants me to do. This has just gone really fast. Originally he thought I would be able to wait for 1-2 years and now he thinks I should go soon. Scares the s*** out of me. Because you really don't have time to swallow this crappy disease, and then they tell you that you need to go for

transplant evaluation soon. I just nee more info is anyone out there can help me

[Guest guest]

,

Don't panic, you will love NJH. I've had GERD since 1974 when I was 19

years old. Back then they called it Hyperacidity. And I did the barium

thing also in November when I was there. One thing it showed was that I

have tracheomalacia. Now I know that Chrondromalacia means sore knees

so I'm thinking I have a sore trachea? Turns out my trachea collapses.

This explains some of the choking episodes. Turns out it can be cause

by intubation...when I got sick in 2002 I was intubated 3 times in one

week because I 1)extubated myelf before they tied my hands down...Doctor

said he'd never seen anybody do that before LOL and 2) chewed through it

again 2 days later. I think thats when they gave me the heavy dope and

I started the hallucianation about the oompa loompas and the rv in the

hospital basement.......but It was something I never knew and they

actually recommend speech therapy to help me not choke. I was just

amazed at everything they did there. I never had to wait more than 10

minutes for my next whatever and everyone (including the little tattooed

cashier in the cafeteria) were nice. Denver is beautiful although in

Feb I imagine it will be cold, the view of the Rockies is amazing,

their is a Whole Foods Store on the main drag I used to go to NJH and my

Marriot was great. I know things are going fast for you, but that is

how some of it affects us. Try and stay as calm as possible and if not

ask for some xanax...better living through chemicals I always say!

Dyane Phoenix

>

> Ok I got my schedule for Feb 1-5 when I go to National Jewish and I'm

just wondering why they are doing some of these tests. Like the The

Barium Swallow Study, and the Talored Barioum Swallow Study. Ok you

know what, I know that I have acid reflux, gerds, what ever you call it.

So really what is this going to tell me about my lung disease? The

reason I am going is that it was suggested that I see and ILD

specialist, before I go for transplant evaluation. which my pulmo dr.

wants me to do. This has just gone really fast. Originally he thought I

would be able to wait for 1-2 years and now he thinks I should go soon.

Scares the s*** out of me. Because you really don't have time to

swallow this crappy disease, and then they tell you that you need to go

for transplant evaluation soon. I just nee more info is anyone out

there can help me

>

[Guest guest]

Dyane

Speech therapy does wonders in helping build back what is lost through

intubation and other problems. My ex mother in law was intubated three

times after open heart surgery and spent around 20 days on the vent. For

a period she had so many tubes down her esophagus. But the speech

therapy did great and she's back to swallowing, eating, and talking more

than ever. When she got to the nursing home she couldn't eat or drink or

talk to be understood. You see the value of great therapists in those

situations. They also gave her exercises to do as well. Oh, by the way,

she pulled the tubes out just like you did before they tied her hands

down.

> >

> > Ok I got my schedule for Feb 1-5 when I go to National Jewish and

I'm

> just wondering why they are doing some of these tests. Like the The

> Barium Swallow Study, and the Talored Barioum Swallow Study. Ok you

> know what, I know that I have acid reflux, gerds, what ever you call

it.

> So really what is this going to tell me about my lung disease? The

> reason I am going is that it was suggested that I see and ILD

> specialist, before I go for transplant evaluation. which my pulmo dr.

> wants me to do. This has just gone really fast. Originally he thought

I

> would be able to wait for 1-2 years and now he thinks I should go

soon.

> Scares the s*** out of me. Because you really don't have time to

> swallow this crappy disease, and then they tell you that you need to

go

> for transplant evaluation soon. I just nee more info is anyone out

> there can help me

> >

>

[Guest guest]

the barium tests are needed because acid reflux can damage your lungs

i was diagnosed in march 2006, the pulmonary at Penn referred me to the transplant team just in case i might need one down the road

the transplant eval was done in july

of course, my lungs were far from ready for transplant -- i already believed that

and i would be a candidate for transplant if necessary

the transplant eval also lets you know if there are other issues that need to be addressed prior to being listed for transplant

also, i was able to go to the eval by myself and walk around the hospital by myself

there were other people there in wheelchairs and were wheeled around

it is such a thorough exam, that i wonder how someone who is really sick can go through the eval or has the strength to go through it

back then, the transplant doc saw me every 6 months, until there was a change in my condition, then he changed the frequency of my visits

the decision to list comes much later, i question how do you know when you are ready to list

your body needs to be healthy enough to go through the surgery, but your lungs need to be bad enough that they need to be replaced

once you list, you still have the option of whether or not to go through with the procedure when they actually call you to tell you that lungs are ready for you

the best part of the transplant eval was seeing people who had transplants doing well and how happy they were that they had the transplant -- it was the light at the end of a very long dark tunnel for me

Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: tests at National JewishTo: Breathe-Support Date: Wednesday, December 16, 2009, 9:06 PM

Ok I got my schedule for Feb 1-5 when I go to National Jewish and I'm just wondering why they are doing some of these tests. Like the The Barium Swallow Study, and the Talored Barioum Swallow Study. Ok you know what, I know that I have acid reflux, gerds, what ever you call it. So really what is this going to tell me about my lung disease? The reason I am going is that it was suggested that I see and ILD specialist, before I go for transplant evaluation. which my pulmo dr. wants me to do. This has just gone really fast. Originally he thought I would be able to wait for 1-2 years and now he thinks I should go soon. Scares the s*** out of me. Because you really don't have time to swallow this crappy disease, and then they tell you that you need to go for transplant evaluation soon. I just nee more info is anyone out there can help me

[Guest guest]

I had that test done last year, it wasnt worst than the colonoscopy!

I had to drink a lot of that nasty barium thing. It took about an hour.

Subject: tests at National JewishTo: Breathe-Support Date: Wednesday, December 16, 2009, 8:06 PM

Ok I got my schedule for Feb 1-5 when I go to National Jewish and I'm just wondering why they are doing some of these tests. Like the The Barium Swallow Study, and the Talored Barioum Swallow Study. Ok you know what, I know that I have acid reflux, gerds, what ever you call it. So really what is this going to tell me about my lung disease? The reason I am going is that it was suggested that I see and ILD specialist, before I go for transplant evaluation. which my pulmo dr. wants me to do. This has just gone really fast. Originally he thought I would be able to wait for 1-2 years and now he thinks I should go soon. Scares the s*** out of me. Because you really don't have time to swallow this crappy disease, and then they tell you that you need to go for transplant evaluation soon. I just nee more info is anyone out there can help me