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Beth

Sounds like the equipment in my ICU hospital room after my VATS. They

had the newest fanciest monitoring equipment as the hospital was new

(but offshoot of regular hospital) heart hospital. Well at the least

movement the equipment went wild. Just rolling over and standing beside

the bed would send the blood pressure reading to around 280. Any

movement would make all the readings go wild. Lights and bells would go

off, quite an annoyance. The result, the nurses ignored all lights and

bells and signals because they were so use to the problems. So, if you

had a legitimate issue, they'd ignore it too. Went down a floor,

different equipment, simpler, and no issues.

Now, another question. What is the purpose of the testing they were

conducting? What is it they thought they could learn that you couldn't

tell them from your regular exercise program and use of treadmill? I ask

because I've seen far more advanced members subjected to PFT's that were

really torturous to them when the status of their progression was pretty

obvious. And, while you can handle the tests you described because you

still are capable of exercising, it seems that if you weren't then they

would be a harsh and unusual punishment. Were there any cardiac tests

being run as long as you were being tortured?

>

> Ugh! Today was a bit aggravating. Had an appointment this morning to

do " exercise testing " at Duke. It was to consist of portions of a pft,

10 minutes of high flow oxygen wearing a venti-mask while at rest, ABG's

then 10-20 minutes on an exercise bicycle, while hooked up to cardiac

and respiratory monitors and an oxymeter. Then repeat ABG's when I was

finished with the exercise.

>

> Plan--A Execution--F We got about halfway through the entire process

and the computer that all the different monitors were hooked up to had a

hissy fit. It was giving off the wall readings that made no sense and no

one and I mean no one could get it fixed. I sat there patiently waiting

for over an hour while half a dozen people worked on it, some were on

the phone with the machines manufacturer. The verdict? Stuck solenoid

somewhere along the way and that's what caused all the readings to be

nuts.

>

> I will have to go back sometime next week to repeat the entire

process. I was frustrated but there's really no one to get angry at.

Things break...stuff happens. It just wore me out.

>

> Thanks for letting me vent, I just needed to get it out of my system.

>

> Beth

> Moderator

> Fibrotic NSIP 06/06 Dermatomyositis 11/08

>

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Bruce,

There actually is a purpose and a benefit to all this nonsense. It's not all just an invention of the Marquis de Sade. LOL

This "exercise tolerance test" is in part a cardiac stress test. I was hooked up to several cardiac leads, an oxymeter and for part of the test had that little mouthpiece we've all used during pft in my mouth.

Had the test been completed we would have had good information on how my heart reacts to exercise, whether the oxygen I currently use is sufficient and appropriate and some baseline information to help them customize my rehab program. Because I currently exercise regularly the rt told me today that if we don't manage to get this test done before 9/9 I can still go ahead and start rehab but frankly, I'd just as soon get it done even if only to have the additional information about my cardiac status. Know what I mean?

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Friday, August 14, 2009 7:29:45 PMSubject: Re: Frustration

BethSounds like the equipment in my ICU hospital room after my VATS. Theyhad the newest fanciest monitoring equipment as the hospital was new(but offshoot of regular hospital) heart hospital. Well at the leastmovement the equipment went wild. Just rolling over and standing besidethe bed would send the blood pressure reading to around 280. Anymovement would make all the readings go wild. Lights and bells would gooff, quite an annoyance. The result, the nurses ignored all lights andbells and signals because they were so use to the problems. So, if youhad a legitimate issue, they'd ignore it too. Went down a floor,different equipment, simpler, and no issues.Now, another question. What is the purpose of the testing they wereconducting? What is it they thought they could learn that you couldn'ttell them from your regular exercise program and use of treadmill? I askbecause I've seen far

more advanced members subjected to PFT's that werereally torturous to them when the status of their progression was prettyobvious. And, while you can handle the tests you described because youstill are capable of exercising, it seems that if you weren't then theywould be a harsh and unusual punishment. Were there any cardiac testsbeing run as long as you were being tortured?>> Ugh! Today was a bit aggravating. Had an appointment this morning todo "exercise testing" at Duke. It was to consist of portions of a pft,10 minutes of high flow oxygen wearing a venti-mask while at rest, ABG'sthen 10-20 minutes on an exercise bicycle, while hooked up to cardiacand respiratory monitors and an

oxymeter. Then repeat ABG's when I wasfinished with the exercise.>> Plan--A Execution--F We got about halfway through the entire processand the computer that all the different monitors were hooked up to had ahissy fit. It was giving off the wall readings that made no sense and noone and I mean no one could get it fixed. I sat there patiently waitingfor over an hour while half a dozen people worked on it, some were onthe phone with the machines manufacturer. The verdict? Stuck solenoidsomewhere along the way and that's what caused all the readings to benuts.>> I will have to go back sometime next week to repeat the entireprocess. I was frustrated but there's really no one to get angry at.Things break...stuff happens. It just wore me out.>> Thanks for letting me vent, I just needed to get it out of my system.>> Beth> Moderator> Fibrotic NSIP

06/06 Dermatomyositis 11/08>

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computers!!!!

when they work, they are great

when they don't work, they are a source of lots of frustration, anger, stress, you name!!!

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: FrustrationTo: Breathe-Support Date: Friday, August 14, 2009, 4:59 PM

Ugh! Today was a bit aggravating. Had an appointment this morning to do "exercise testing" at Duke. It was to consist of portions of a pft, 10 minutes of high flow oxygen wearing a venti-mask while at rest, ABG's then 10-20 minutes on an exercise bicycle, while hooked up to cardiac and respiratory monitors and an oxymeter. Then repeat ABG's when I was finished with the exercise.

Plan--A Execution--F We got about halfway through the entire process and the computer that all the different monitors were hooked up to had a hissy fit. It was giving off the wall readings that made no sense and no one and I mean no one could get it fixed. I sat there patiently waiting for over an hour while half a dozen people worked on it, some were on the phone with the machines manufacturer. The verdict? Stuck solenoid somewhere along the way and that's what caused all the readings to be nuts.

I will have to go back sometime next week to repeat the entire process. I was frustrated but there's really no one to get angry at. Things break...stuff happens. It just wore me out.

Thanks for letting me vent, I just needed to get it out of my system.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

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Beth

I knew you wouldn't do it without knowing the reason and for Cardiac

purposes makes so much sense. Thats the thing is that we can tell how

our lungs are doing but the heart is a different story. Even those

healthy who are my age should have periodic cardiac exams including

stress tests. Even if nothing else they give a baseline. The first thing

the doctors need if you have an issue is a prior to compare it to. Now

with your prior problems and the other issues we all have, it becomes

even more important.

> >

> > Ugh! Today was a bit aggravating. Had an appointment this morning to

> do " exercise testing " at Duke. It was to consist of portions of a pft,

> 10 minutes of high flow oxygen wearing a venti-mask while at rest,

ABG's

> then 10-20 minutes on an exercise bicycle, while hooked up to cardiac

> and respiratory monitors and an oxymeter. Then repeat ABG's when I was

> finished with the exercise.

> >

> > Plan--A Execution--F We got about halfway through the entire process

> and the computer that all the different monitors were hooked up to had

a

> hissy fit. It was giving off the wall readings that made no sense and

no

> one and I mean no one could get it fixed. I sat there patiently

waiting

> for over an hour while half a dozen people worked on it, some were on

> the phone with the machines manufacturer. The verdict? Stuck solenoid

> somewhere along the way and that's what caused all the readings to be

> nuts.

> >

> > I will have to go back sometime next week to repeat the entire

> process. I was frustrated but there's really no one to get angry at.

> Things break...stuff happens. It just wore me out.

> >

> > Thanks for letting me vent, I just needed to get it out of my

system.

> >

> > Beth

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

>

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Beth,

I think lunch on Thursday would be best - I will be all finished with doctors, tests, etc.

Wednesday will be a rush getting to the airport after work, travel etc. If the flight is on time

everything is great, but if the flight is late we are all off schedule. I will call you Thursday morning and we can plan.

Is there any place local that you like for lunch? We always go to a place call (I Think) Grigg great old fashioned home cooking.

It is on the way to the airport, but would have to look up the location and see if it good for you.

Dorothy Reinecke-Fayetteville, GA

VATS 7/05

UIP 7/05

From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of BethSent: Friday, August 14, 2009 6:13 PMTo: Breathe-Support Subject: Re: Frustration

Dorothy,

I've got it and if I haven't given you mine yet, it's . Would you rather have supper on Wednesday or something when you get finished on Thursday? Whatever works for you is fine with me. Think about it. Either will be fine with me. Let me know next week. I'm really looking forward to meeting you!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Dorothy Reinecke <atlantadorothy (AT) att (DOT) net>To: Breathe-Support Sent: Friday, August 14, 2009 5:26:23 PMSubject: Re: Frustration

Hi Beth,

Venting is wonderful - everyone needs a small dose daily to be able to keep smiling. At least it was the machine that wasn't having problems and not you :-)

Sorry about your day, but everything always seems to happen for a reason. I am looking forward to hopefully getting to meet you on Thursday, 8/20 when I am at Duke. I will be at the Millenium Hotel Wednesday night, 8/19, then at Duke starting at 8:00 AM - hope to be finished by 12.

My cell phone number is:

Dorothy Reinecke, Fayetteville, GA

VATS 7/05

UIP 7/05

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Friday, August 14, 2009 4:59:34 PMSubject: Frustration

Ugh! Today was a bit aggravating. Had an appointment this morning to do "exercise testing" at Duke. It was to consist of portions of a pft, 10 minutes of high flow oxygen wearing a venti-mask while at rest, ABG's then 10-20 minutes on an exercise bicycle, while hooked up to cardiac and respiratory monitors and an oxymeter. Then repeat ABG's when I was finished with the exercise.

Plan--A Execution--F We got about halfway through the entire process and the computer that all the different monitors were hooked up to had a hissy fit. It was giving off the wall readings that made no sense and no one and I mean no one could get it fixed. I sat there patiently waiting for over an hour while half a dozen people worked on it, some were on the phone with the machines manufacturer. The verdict? Stuck solenoid somewhere along the way and that's what caused all the readings to be nuts.

I will have to go back sometime next week to repeat the entire process. I was frustrated but there's really no one to get angry at. Things break...stuff happens. It just wore me out.

Thanks for letting me vent, I just needed to get it out of my system.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

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