Re: Re: Update on Me Mischievous Kitten

[Guest guest]

Ive had two echocardiograms (because it was question if I had CHF which I do not) in the last 3 months but the Pulmo Dr is not the one who did it.As for the # of tubes of blood they took It looked like maybe 10 or so- It was ALOT! Because I remember commenting on it. Then he had me come back and take more (probably 5-6 tubes) and then he also did am arterial blood gas and had me take the oxygen off for 20 min for that test.As for the form of ILD that he believed it was- he told me He was not going to make any guesses-but just said it was rare and he only had 4-5 patients come in with this a year and that he did not want to order any tests that may not be necessary and wanted to send me to this Dr in Iowa City who specializes in this field. He also mentioned the need of a lung biopsy

and it would be this Dr in Iowa City to decide. I am suppose to get that appointment next week!DonnaTo: Breathe-Support Sent: Thu, November 26, 2009 12:34:18 PMSubject: Re: Update on Me Mischievous Kitten

Donna

Oh so lowest apnea was 44 but oxygen only dropped 4%. Oxygen drops in

everyone and 4% would seem normal but what they look for is what

percentage of time your oxygen drops below 90%. On my first overnight

oximeter, mine was below 90% for over 25% of the night.

You said the pulmonologist thinks he knows what form? What form does he

think?

A Center of Excellence will take far more labs than I imagine your

pulmonologist did. When I went they took 22 tubes of blood (obviously

not much blood per tube).

In all this did you have an echocardiogram?

> > >

> > > I am correcting something I typed here! It says I had 62 episodes

> when

> > tested for sleep apnea..That is wrong...I had 92 episodes an hour.

> > >

> > > Donna

> > > (Iowa)

> > >

> > >

> > >

> > >

> > > ____________ _________ _________ __

> > > From: mischievouskitten mischievouskitten@ ...

> > > To: Breathe-Support@ yahoogroups. com

> > > Sent: Thu, November 26, 2009 7:12:21 AM

> > > Subject: Update on Me

> > >

> > >

> > > First let me start this by saying Happy Thanksgiving to you all! I

> > hope Each and everyone has a beautiful day! I have so much to be

> > thankful for!

> > >

> > > I had the CT scans as ordered,the six minute walk,and the lung

> > function,blood workup and the sleep apnea testing. I seen my

Pulmodude

> > > yesterday and hes what I know so far:

> > >

> > > For 12 years I have been told I have COPD/asthma THIS IS NOT TRUE.

I

> > have restrictive air. (I can get it out,but hard to get it in). I

do

> > have Interstitial Lung Disease. My Pulmodude believes he knows what

> type

> > it is but does not want to guess, he wants me to see a renowned

> > specialist in the field who is also a professor as well as Dr in

Iowa

> > City. I do not remember his name LOL but I will let You all know his

> > name next week.

> > >

> > > My 6 min walk ended with me needing 6 liters of oxygen to walk

> instead

> > of the 3 liters I am on for rest and being up. That has been changed

> now

> > to 3 liters when resting and 4 when up. I had the lung function only

> 44%

> > lung function and only 44% of oxygen getting into blood. (Hope that

> made

> > sense)...

> > >

> > > My Pulmodude told me what I have is rare and He only gets maybe

4-5

> > people a year in his office hence the reason to send me to Iowa City

> to

> > see this renowned Dr as the Pulmodude put it! The Pulmodude said he

> did

> > not want me to take any tests that were unnecessary another reason

he

> is

> > sending me to Iowa City.

> > >

> > > My Pulmodude believes I need a lung biopsy and if so he told me it

> > would be done on my side. He also told me if what they are seeing is

> > scar tissue they cannot reverse that but they could try and give me

> meds

> > that may keep it from getting worse. If it turns out to be

> inflammation

> > it could be reversed.

> > >

> > > The Pulmodude told me these are some BIG DECISIONS! I am very

afraid

> > of needing the lung biopsy I have heard most talk about it on here.

I

> do

> > not tolerate anesthesia well, I do not wake up from it too

well...and

> I

> > end up with a severe sore throat and a very very bad cough after

> things

> > like this. There is a part of me that just does not think my body

can

> > really handle any more stress than its already going through.

> > >

> > > Ohh My sleep apnea test came back as SEVERE APNEA! I had 62

episodes

> > an hour,,,my oxygen dropped by 4%. My lowest oxygen was at 44. So

Next

> > week I get fitted for the mask to wear at bed and they will be

> bleeding

> > in my oxygen to it when I sleep.

> > >

> > > So this is my update thus far! It makes me tired to think about

it!

> > HAHA!

> > >

> > > Again -Happy Thanksgiving! !

> > > Donna

> > > (Iowa)

> > >

> >

>