Re: Scared in my lungs or there is

[Guest guest]

Sorry Donna.....The nurse should not have said what she did. I'm not sure would have been a better ans. Hope everything turns out OK john

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Tue, November 17, 2009 11:01:21 AMSubject: Scared in my lungs or there is

I had my CT scans last week done by the pulmo-dude. They want me in for lung function test on Friday and another blood test(They said it can not wait)! They took so much blood last week I wonder how much more there is. LOL!They changed the next pulo appt which was for DEC 7th...to the 25 at 1:30. So everything is being rushed! The nurse told me when she called to make these changes that there is no blood clots seen in the CT scan (that is good news)! BUT...Either there is A LOT of infection in my lungs OR there is a lot of inflammation. I said to her this sounds serious and she said it could be.Any feedback? I am scared.Donna (Iowa)

[Guest guest]

Donna:

I'm sure that the rushing is making things more frightening, but it is good to know that your medical team is on top of things. I will be keeping you in my prayers.

B

Barbara McD

PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever

Beautiful Western NC

Attitude is everything.

To: Breathe-Support Sent: Tue, November 17, 2009 11:01:21 AMSubject: Scared in my lungs or there is

I had my CT scans last week done by the pulmo-dude. They want me in for lung function test on Friday and another blood test(They said it can not wait)! They took so much blood last week I wonder how much more there is. LOL!They changed the next pulo appt which was for DEC 7th...to the 25 at 1:30. So everything is being rushed! The nurse told me when she called to make these changes that there is no blood clots seen in the CT scan (that is good news)! BUT...Either there is A LOT of infection in my lungs OR there is a lot of inflammation. I said to her this sounds serious and she said it could be.Any feedback? I am scared.Donna (Iowa)

[Guest guest]

Donna,I know its easy to say don't be scared but sounds like they just want to get the ball rolling a little faster. I have had this disease going on 8 years starting off by a 24 day hospital stay with 8 days on a ventilator. Regular xrays are no good on me anymore because they look like I have double pneumonia when it is just the "ground glass opacity" Scars look like fluid. I'm not saying yours is like mine just sometime regular doctors (cat scan techs, etc) freak out more than is necessary. How do you feel? I base a lot on how I feel. We become very in tune with our bodies. I can tell I'm getting a sinus infections before my nose stuffs up. I can 'feel' it. I knew before testing when I regressed and when I didn't. It's a crappy disease we have but like Peggy says I haven't found that expiration stamp on my butt yet! (And its soo big you would think it would be easy to see) LOL Take some deep (pun intended) breaths and make plans for Thanksgiving like the rest of us.....gobble gobbleDyane phoenix ifp 02>> I had my CT scans last week done by the pulmo-dude. They want me in for lung function test on Friday and another blood test(They said it can not wait)! They took so much blood last week I wonder how much more there is. LOL!> > They changed the next pulo appt which was for DEC 7th...to the 25 at 1:30. So everything is being rushed! The nurse told me when she called to make these changes that there is no blood clots seen in the CT scan (that is good news)! BUT...Either there is A LOT of infection in my lungs OR there is a lot of inflammation. I said to her this sounds serious and she said it could be.> > Any feedback? I am scared.> > Donna > (Iowa)>

[Guest guest]

Donna

I know the urgency is frightening and nothing we say will make it less

so. However, you mentioned infection and inflammation as possibilities

and both of those are generally treatable. The additional blood

certainly indicates that there are some more specific things they are

testing for. Obviously neither of us knows what it is they're going to

find. But, I hold the hope that they are finding something definitive

and it is something they can treat. I also applaud that your doctor is

rushing things rather that making you sit even longer wondering what is

going on. There is nothing worse than the wait.

>

> I had my CT scans last week done by the pulmo-dude. They want me in

for lung function test on Friday and another blood test(They said it can

not wait)! They took so much blood last week I wonder how much more

there is. LOL!

>

> They changed the next pulo appt which was for DEC 7th...to the 25 at

1:30. So everything is being rushed! The nurse told me when she called

to make these changes that there is no blood clots seen in the CT scan

(that is good news)! BUT...Either there is A LOT of infection in my

lungs OR there is a lot of inflammation. I said to her this sounds

serious and she said it could be.

>

> Any feedback? I am scared.

>

> Donna

> (Iowa)

>

[Guest guest]

Donna....I know you are feeling afraid over "what if". We've all had that feeling. Hang on and don't let your fears get the best of you. You will handle it, whatever it is, just like all the rest of us have to do.

You're not alone, no matter what you go through.

Keep on keepin' friend!

MamaSher; 71, IPF 3-2006, OR.Don't fret about tomorrow, God is already there!

Re: Scared in my lungs or there is

DonnaI know the urgency is frightening and nothing we say will make it lessso. However, you mentioned infection and inflammation as possibilitiesand both of those are generally treatable. The additional bloodcertainly indicates that there are some more specific things they aretesting for. Obviously neither of us knows what it is they're going tofind. But, I hold the hope that they are finding something definitiveand it is something they can treat. I also applaud that your doctor isrushing things rather that making you sit even longer wondering what isgoing on. There is nothing worse than the wait.>> I had my CT scans last week done by the pulmo-dude. They want me infor lung function test on Friday and another blood test(They said it cannot wait)! They took so much blood last week I wonder how much morethere is. LOL!>> They changed the next pulo appt which was for DEC 7th...to the 25 at1:30. So everything is being rushed! The nurse told me when she calledto make these changes that there is no blood clots seen in the CT scan(that is good news)! BUT...Either there is A LOT of infection in mylungs OR there is a lot of inflammation. I said to her this soundsserious and she said it could be.>> Any feedback? I am scared.>> Donna> (Iowa)>

[Guest guest]

Donna -

I wish my pulmo dude worked that quickly. Remeber to keep an optimistic

attitude. Some doctors just do not have patient skills and some of the nurses

are worse!! I showed up with my portfolio of test results and the nurse got her

nose bent out of shape. Wanted me to duplicate tests and fill out the forms (I

had my list of medications all typed up) with info that could just as easily be

attached. I even offered to email the info if it would mean they wouldn't have

to enter it into the computer. Go figure. Some doctors / nurses / technicians

are much better than others. You know yourself best. Don't settle for anything

less than the best from your doctors. You can always tell your doctor / nurse

that you are frightened. Maybe they will ease up on their scary presentation of

information. We are here for you to vent to and get some help in dealing with

the info. I was in a black hole for 3 years and this group has pulled me into

the light. Knowing what you are dealing with is so much better than not knowing

and not having a place to go for information on oxygen equipment, medications,

help finding drug interactions... This group will help you. Keep your

appointments and on the bright side, you will be all done before Christmas and

New Years! Be sure to have all of your questions ready for your doctor and

don't let your pulmo-doc off the hook. Take a friend or relative with you when

you go for your appointment if you need help getting those questions asked AND

answered.

Where are you in Iowa? My sone is just finishing up his doctorate studies at

Iowa State at Ames. My husband was raised in the Mason City Area and his sister

and her family live over by Rockford. We moved from Minnesota to Iowa about 10

years ago, but go back to the midwest every year.

Stefani 61 year old Utahn

LD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009

> >

> > I had my CT scans last week done by the pulmo-dude. They want me in

> for lung function test on Friday and another blood test(They said it can

> not wait)! They took so much blood last week I wonder how much more

> there is. LOL!

> >

> > They changed the next pulo appt which was for DEC 7th...to the 25 at

> 1:30. So everything is being rushed! The nurse told me when she called

> to make these changes that there is no blood clots seen in the CT scan

> (that is good news)! BUT...Either there is A LOT of infection in my

> lungs OR there is a lot of inflammation. I said to her this sounds

> serious and she said it could be.

> >

> > Any feedback? I am scared.

> >

> > Donna

> > (Iowa)

> >

>

[Guest guest]

my ex went to grad school in Des Moines -- i lived in Des Moines for a year at that time

a long time ago -- he graduated in 1968

it was my first time away from home,

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: Scared in my lungs or there isTo: Breathe-Support Date: Tuesday, November 17, 2009, 5:56 PM

Donna -I wish my pulmo dude worked that quickly. Remeber to keep an optimistic attitude. Some doctors just do not have patient skills and some of the nurses are worse!! I showed up with my portfolio of test results and the nurse got her nose bent out of shape. Wanted me to duplicate tests and fill out the forms (I had my list of medications all typed up) with info that could just as easily be attached. I even offered to email the info if it would mean they wouldn't have to enter it into the computer. Go figure. Some doctors / nurses / technicians are much better than others. You know yourself best. Don't settle for anything less than the best from your doctors. You can always tell your doctor / nurse that you are frightened. Maybe they will ease up on their scary presentation of information. We are here for you to vent to and get some help in dealing with the info. I was in a black hole for 3 years and this group has pulled me into the

light. Knowing what you are dealing with is so much better than not knowing and not having a place to go for information on oxygen equipment, medications, help finding drug interactions. .. This group will help you. Keep your appointments and on the bright side, you will be all done before Christmas and New Years! Be sure to have all of your questions ready for your doctor and don't let your pulmo-doc off the hook. Take a friend or relative with you when you go for your appointment if you need help getting those questions asked AND answered. Where are you in Iowa? My sone is just finishing up his doctorate studies at Iowa State at Ames. My husband was raised in the Mason City Area and his sister and her family live over by Rockford. We moved from Minnesota to Iowa about 10 years ago, but go back to the midwest every year.Stefani 61 year old Utahn LD 2/2006, NSIP (fibrotic) 10/2009, Diabetes II 2/2006, Sleep Apnea 4/2009> >> > I had my CT scans last week done by the pulmo-dude. They want me in> for lung function test on Friday and another blood test(They said it can> not wait)! They took so

much blood last week I wonder how much more> there is. LOL!> >> > They changed the next pulo appt which was for DEC 7th...to the 25 at> 1:30. So everything is being rushed! The nurse told me when she called> to make these changes that there is no blood clots seen in the CT scan> (that is good news)! BUT...Either there is A LOT of infection in my> lungs OR there is a lot of inflammation. I said to her this sounds> serious and she said it could be.> >> > Any feedback? I am scared.> >> > Donna> > (Iowa)> >>

[Guest guest]

Hi Donna,

Sorry that you are worried about all of the things going on. But, you are in a

good area for IPF treatment because you can't be too far from the U. of Iowa.

Their lung research dept is one of the best. Although they are not listed as a

center of excelence I know first hand that they communicate with many various

doctors that are in those centers. They are up to date on all of the latest.

They have even suggested a " cocktail " of three drugs for IPF treatment. I went

for an " informal " review because my wife is from Iowa City and has a nurse

relative in the lung dept. Dr. Lakshmi Durairaj is one of the most knowledgable

lung doctor's and kind people you could ever meet. Her colleague Dr.

Hunnehake is a leading expert on IPF dxs. They both corresponded about me with

my doctor at the U of Miami. I couldn't be more satisfied with their efforts. I

still correspond with Lakshmi about questions I have.

If you need a second opinion or want to change check out the U of Iowa.

All the best,

Terre, IPF, 6-08, FL

> > >

> > > I had my CT scans last week done by the pulmo-dude. They want me in

> > for lung function test on Friday and another blood test(They said it can

> > not wait)! They took so much blood last week I wonder how much more

> > there is. LOL!

> > >

> > > They changed the next pulo appt which was for DEC 7th...to the 25 at

> > 1:30. So everything is being rushed! The nurse told me when she called

> > to make these changes that there is no blood clots seen in the CT scan

> > (that is good news)! BUT...Either there is A LOT of infection in my

> > lungs OR there is a lot of inflammation. I said to her this sounds

> > serious and she said it could be.

> > >

> > > Any feedback? I am scared.

> > >

> > > Donna

> > > (Iowa)

> > >

> >

>