New to the group

[Guest guest]

YES, But you trained him -hehe-just kidding .That was sooooo good..

LOVE & HUGS, grandmomBEV

Re: New to the group

No it was only 2 weeks. My (semi-anal) husband planned the whole thing,

including making motel/hotel reservations, we stayed in Yellowstone for 3

nights, and everywhere else 1, except SF we stayed 2 nights. Most days we

didn't drive too much, just the worst was from Idaho Falls to Bend Oregon,

including stopping off at the Craters of the Moon Natl Park in Idaho. We

didn't get into Bend until close to midnight. All the other days were not so

exhausting. My husband knows how to do these things, hes an engineer, does

that explain anything?

Love,

[Guest guest]

New to the group

Hi my name is Kristi. I'm due late nov with my first child. He has

cf. I found out a couple of months ago. I learning as much as i can

to prepare myself. I didn't know anything about before cf before all

this. It's alot to take in. So much to know. Any help for a soon to

be new parent would be gladly appreciated.

[Guest guest]

Jane Thank you this is very helpful. I think I'm doing everything I can

right now. I have been to the cf clinic. It's in the childrens hosp. right

up the street. I live in virginia beach.My dad who lives here is a

pharmacist. We are very close and he's been very helpful. I'm also getting

ultra sounds everyother month. So far my son is not showing anys signs. I

also know he has two of the most common genes.It's alot to learn. Bring home

new baby is enough with all of this it's alot!! But I'm learning and I know

we won't know much until he is born. I'll keep u posted. I will check out

that book.

Kristi

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: RE: New to the group

>Date: Wed, 20 Aug 2003 22:01:37 -0400

>

>Hi Kristi,

>

>

>

>As almost everyone has said already, it is incredibly fortunate that you

>found out before he is born. Kate was diagnosed at two months, and I

>was a wreck for that time period. Things were MUCH better after

>diagnosis! She grew fat and rosy and happy (finally)! I've mulled it

>over a little and here's some stuff I wish I had known at the beginning.

>

>1) If you are considering breastfeeding, try it. Your docs may suggest

>Pregestimil or some other predigested formula. But, I would ask them to

>give it a try for a few weeks. I'm sure you've heard all the lectures

>about the benefits of breastfeeding, so I will only point out that

>breastfed babies tend to have fewer allergies. This will be incredibly

>important later on in avoiding GI upset (food allergies) and lung

>involvement (airborne allergies.) And you'll save lots of money! :-)

>

>2) Get a copy of Orenstein's book Cystic Fibrosis: A Guide for

>Patient and Family - I like this book because you can just read the

>chapters you're needing at the time. The latest edition of this book is

>coming out this November, so you may want to just borrow a copy until

>the new one is available. Anyone else have a favorite CF book to

>recommend?

>

>3) Enzymes will most likely be prescribed for your baby. I fed these to

>Kate in applesauce, but other acidic foods work too. Anybody have

>favorites other than applesauce?

>

>4) ADEK vitamins will almost certainly be prescribed for your infant.

>Kate DID NOT like the liquid. She LOVES the chewables. If your baby

>does not like the liquid, check with his doctors and see if you can

>grind up the tablets and give as a powder. Note: As I found out AFTER

>giving vitamins for a couple of months, vitamins should be taken with

>enzymes.

>

>5) Nebulized (inhaled) medications and CPT (chest physical or physio

>therapy) were hard for me in the beginning. I was afraid of it being

>really unpleasant for Kate. But, we just worked at it and gradually

>moved from doing " blow-bys " to using a little mask. And CPT was really

>clumsy and short at first, but then I found some videos that held Kate's

>attention and was able to improve and extend the sessions. Now Kate

>really enjoys treatment time - it's the only time she's allowed to watch

>TV.

>

>6) My husband just said, " Tell her about clinic; I'd never heard of

>'clinic' before. " Once your baby is born, you'll take him to the

>nearest CF Center (you can find all the centers near you at www.cff.org

><http://www.cff.org/> ) on a regular basis. Kate goes once every three

>months, but it may be more frequent than that at first. At clinic, your

>baby will be measured first (weight, length, oxygen saturation, blood

>pressure, etc.) Then a nurse will talk to you about how things are

>going with your baby - eating, pooping, sleeping, etc. You will also

>have a chance to see the nutritionist, the social worker (problem

>solvers extraordinaire), the respiratory therapist, and finally your

>doctor(s). Our doctor is a pediatric pulmonologist, but we've also seen

>a gastroenterologist. And one clinic we went to in Florida even had a

>pharmaceutical specialist to monitor dosing of medication, drug

>interactions, etc. Anyway, clinic takes a LONG time, and offers lots of

>opportunities for your child to get restless. If you can, bring someone

>with you to these appointments - husband, parent, friend, etc. You'll

>want to pay attention to what these specialists are telling you, and

>it's really difficult if your child is screaming in your ear or trying

>to lick the floor!

>

>OK, I'm stopping here. Looking over my rather lengthy reply, it seems

>that I've focused on the extra things that need attention when you have

>a child with CF. Like you said, it's overwhelming. However, you'll get

>used to it gradually. Don't think you have to do everything

>immediately. I started with enzymes first. Then I added vitamins.

>Then I tried the nebulizer (a respiratory therapist will show you how to

>work it.) And so on.

>

>I hope this helps a little. Let us know how you're doing and what

>you're thinking about.

>

>

>

> Jane Lindrum

>

>Mom of Kate, 4 wcf

>

>

>

>

>

>

>

>

>

>

>

> New to the group

>

>

>

>Hi my name is Kristi. I'm due late nov with my first child. He has

>cf. I found out a couple of months ago. I learning as much as i can

>to prepare myself. I didn't know anything about before cf before all

>this. It's alot to take in. So much to know. Any help for a soon to

>be new parent would be gladly appreciated.

>

>

>

>

>

>

>

>

[Guest guest]

Angie It's so funny how u hear so many different things from doctors. I

asked my doc. at the cf clinic because I wanted to breastfeed. He told me it

could be better for him and he wants me to try.

Kristi

>

>Reply-To: cfparents

>To: <cfparents >

>Subject: Re: New to the group

>Date: Wed, 20 Aug 2003 22:30:57 -0400

>

>

>

>Kristi, about the breastfeeding...if you want to breastfeed please try it.

> We didn't know my son had cf until he was 4 months and I breastfed.

>Turns out he is pancreatic sufficient and breastfeeding was fine. If I had

>known about the cf when he was born, I may have listened the the " experts "

>who usually recommend special formula and I wouldn't have had the pleasure

>of bf my boy. Some cf children do fine on breast milk and some need a

>little extra help. I feel strongly that breastfeeding for the first 18

>months (along with other food) of course) is one of the reasons my son has

>been so healthy.

>

>Angie (Ma to JC, 3yo, wcf)

> RE: New to the group

>

>

> Hi Kristi,

>

>

>

> As almost everyone has said already, it is incredibly fortunate that you

> found out before he is born. Kate was diagnosed at two months, and I

> was a wreck for that time period. Things were MUCH better after

> diagnosis! She grew fat and rosy and happy (finally)! I've mulled it

> over a little and here's some stuff I wish I had known at the beginning.

>

> 1) If you are considering breastfeeding, try it. Your docs may suggest

> Pregestimil or some other predigested formula. But, I would ask them to

> give it a try for a few weeks. I'm sure you've heard all the lectures

> about the benefits of breastfeeding, so I will only point out that

> breastfed babies tend to have fewer allergies. This will be incredibly

> important later on in avoiding GI upset (food allergies) and lung

> involvement (airborne allergies.) And you'll save lots of money! :-)

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

My son, almost 3 yo with CF, is still nursing. He is doing great

healthwise. We never had any problems that were due to breastmilk.

Rather, he has recovered from colds and infections even more quickly

than my older daughter ( no longer nursing!). He is pancreatic

insufficient and used to take enzymes when he nursed, till about 2 years

of age. Then he no longer needed them for nursing.

In my opinion, nursing avoids a lot of the problems of formulas, in

terms of allergies and digestion. Breastmilk is very easily assimilated.

It can be low in sodium, so it might be a good idea to have him lick a

little salt off your finger or something, until he's on solid foods. A

mom I know whose daughter was diagnosed with CF at birth did this and

found it helped.

I fully support either decision, especially with an additional challenge

like CF, but just wanted to lend some support to the decision to nurse.

I think it's great! Our clinic does too, and they fully support

nursing until he decides to wean completely.

Re: New to the group

>Date: Wed, 20 Aug 2003 22:30:57 -0400

>

>

>

>Kristi, about the breastfeeding...if you want to breastfeed please try

it.

> We didn't know my son had cf until he was 4 months and I breastfed.

>Turns out he is pancreatic sufficient and breastfeeding was fine. If I

had

>known about the cf when he was born, I may have listened the the

" experts "

>who usually recommend special formula and I wouldn't have had the

pleasure

>of bf my boy. Some cf children do fine on breast milk and some need a

>little extra help. I feel strongly that breastfeeding for the first 18

>months (along with other food) of course) is one of the reasons my son

has

>been so healthy.

>

>Angie (Ma to JC, 3yo, wcf)

[Guest guest]

Hi lyn,

There is not much I can comment on at this time. It sounds like you have had

a rough time for a while now. I can only suggest that you work with a GI that

you feel good with and that you see how this develops.

I hope you have had a good day

Best wishes Poncho - GA

[Guest guest]

When you were hospitalized were you seen by a gastroenterologist? A

G.I doctor is a physician that specializes in gastrointestinal

diseases. If you don't get the answers you desire try a pain

management physician. It is not unusual for a person to have one

episode that documents sky high pancreatic enzymes and then for them

to subsuqently continue to get lower and lower and lower as time

progresses,as alot of those out here have discovered the pain is not

always equal to the enzyme levels.

Try to remain diligent in your search for answers and help with

pain control. Don't let them ( the physicians tell you that you are

not in pain) physician have a duty to their patients, and there are

those out there that really do want to help.

Atwell LPN

[Guest guest]

Hi GAle..and welcome!!! Best of luck on your upcoming surgery!!!! I know things

will go greatfor you!!! It took me 3 years to make my decision, and I wish I had

not waited soo long! I am down 156.3 lbs to date, and am 8 months out....please

take care, and post when you can@!!!!! sherri

new to the group

hi, i'm new to the group and wanted to introduce myself. i'm from

maryland and am scheduled for open RNY on july 19, 2004. i've been

researching for over a year now and feel i'm making the right choice

for me. i'll probably lurk mostly until after surgery and then i'm

sure i'll have tons of questions. congrats to all who have had the

surgery and been succesful. see you on the loosing side.

gale in maryland

open rny 7/19/04

[Guest guest]

Best of luck to you, Carol - I wish MY surgery was Thursday; then I'd

be done with all this and getting on with my life with a " normal "

bite. I have yet to begin though - I just decided to go thru all this

FUN - I found a great surgeon but need to find a great orthodontist

(my surgeon will probably refer me to someone that he's had good

outcomes with). All the people on this site, you included, have been

very inspirational to me. I'm sure your surgery will go smoothly and

you'll soon be on the mend. Take care of yourself: Everything will

be fine. I'll be thinking of you. / Diane (from Idaho)

> Hello Everyone!

>

> My name is Carol. I was a member of this group a couple of years

ago

> when I had my first orthognathic surgical procedure: an upper

> pallatal expansion. On Thursday, I'm having part two of my

> treatment. After being in braces, for what seems like forever, all

> of my teeth are " straight " . But I won't ever have a bite - or be

> able to enjoy a ham sandwich with lettuce, like " normal " people -

> until I have this second surgery. According to the approval from

my

> insurance company it's called a reconstruct of mandibular rami and

> midface, lefort 1. I'm not sure I know what all of that technical

> jargon means but I do know that my upper jaw will be tilted into

> its " correct " position and my lower jaw will have pieces taken out

> and be moved back. Then, I'm going to be wired shut. <sigh> So,

I've

> basically been in denial for the last, oh, few months or so. But

> now, the time is almost here - and I'm beginning to be a nervous

> wreck! I have a support system, a 13 year old son that is very

> independent and a Mom who is taking off work to " take care of " me

and

> a boyfriend who will be with me all the way and do whatever he can

to

> help. But, I'm missing the support of people who can really

> *understand* what I'm going through - the physical & the

emotional.

> So, I plan to be here daily to read posts and ask questions. Any

> advice that anyone could throw my way would be *greatly*

appreciated!

>

> Anyway, thanks for listening!

> Carol

[Guest guest]

Diane,

For me, my surgery tomorrow has been three years in the making.

That's when I first committed to my Surgeon that I would stick it out

for the first surgery, for orthodontics, for the second surgery. And

through the appointments and the money and the time - It really all

seems like just yesterday. It flies, it really does. Just hang in

there and enjoy each piece as much as you can. It's the journey that

counts ... along with the destination. Thanks so much for your

well wishes and kind words. They mean a lot.

Take Care,

Carol

> > Hello Everyone!

> >

> > My name is Carol. I was a member of this group a couple of years

> ago

> > when I had my first orthognathic surgical procedure: an upper

> > pallatal expansion. On Thursday, I'm having part two of my

> > treatment. After being in braces, for what seems like forever,

all

> > of my teeth are " straight " . But I won't ever have a bite - or be

> > able to enjoy a ham sandwich with lettuce, like " normal " people -

> > until I have this second surgery. According to the approval from

> my

> > insurance company it's called a reconstruct of mandibular rami

and

> > midface, lefort 1. I'm not sure I know what all of that

technical

> > jargon means but I do know that my upper jaw will be tilted

into

> > its " correct " position and my lower jaw will have pieces taken

out

> > and be moved back. Then, I'm going to be wired shut. <sigh> So,

> I've

> > basically been in denial for the last, oh, few months or so. But

> > now, the time is almost here - and I'm beginning to be a nervous

> > wreck! I have a support system, a 13 year old son that is very

> > independent and a Mom who is taking off work to " take care of " me

> and

> > a boyfriend who will be with me all the way and do whatever he

can

> to

> > help. But, I'm missing the support of people who can really

> > *understand* what I'm going through - the physical & the

> emotional.

> > So, I plan to be here daily to read posts and ask questions. Any

> > advice that anyone could throw my way would be *greatly*

> appreciated!

> >

> > Anyway, thanks for listening!

> > Carol

[Guest guest]

Hello everyone!!! I am new to the group. I have Cutler's

copyright 1999 book. Is there an supplemental information published or

is there a new edition that I do not know about? Thank you in advance

for any information.

[Guest guest]

Hi Ted,

Welcome! I just checked the way you have your membership set up and you are reading the daily digest. I have similar difficulties with this format, trying to read new posts but find I'm reading the same posts again and again as the history comes up with every post.

I get my messages by individual emails, that's what works best for me but some find they get too many emails to cope with. You might want to just try reading the messages directly off the board. Here is the link to the message area:

http://health.groups.yahoo.com/group/Breathe-Support/messages

Here are a few definitions:

ABG-arterial blood gas-a blood sample taken from an artery in your wrist to measure the oxygen, carbon dioxide content of your blood among other things

6MW-6 minute walk- a test where you walk for 6 minutes while having your oxygen saturations monitored to assess how your body responds to exertion.

ILD-Interstitial lung disease-this is the type of lung disease that we all have. These are diseases of the lining tissue of the air sacs of the lungs, sometimes inflammatory in nature, sometimes fibrotic in nature, sometimes both

NSIP-non specific interstitial pneumonitis one type of ILD

LOL-laughing out loud

BTW By the way

Here is a link to the program directory of the American Association of Cardiovascular and Pulmonary Rehabilitation:

http://www.aacvpr.org/Resources/SearchableProgramDirectory/tabid/97/Default.aspx

This is by no means a complete database of programs. Duke's isn't even listed but it's a place to start. I've been told that the best programs tend to be associated with transplant centers. It kind of makes sense if you think about it.

Don't necessarily dismiss a program because it's not similar to Duke's. The first time I went through rehab it was in NY at Helen rehab hospital. It was a great program but much much simpler than Dukes. It was 3 days a week, for about 3 hours each time for 12 weeks. We did the treadmill, some work with hand weights, and ankle weights and had educational/informational sessions. It was great and I got a tremendous benefit. Duke has a reputation of having the "boot camp" of pulmonary rehab. They are not all like that but that doesn't mean other programs aren't good, they are just different.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, July 7, 2009 1:34:32 PMSubject: New to the Group

Hi, I'm Ted from Lombard, a suburb of Chicago, Having some problems navigating/unerstan ding all your messages. I keep reading the same ones over and over. Is there any way to avoid that?Also the anacronyms are confusing: ABG's, lol, 6MWtest, ILD, NSIP, BTW. Anyone care to translate?Lastly, I've just finished 12 weeks (3 times x wk) of Cardio Rehab and am scheduled to start 10 weeks (2 times x wk) of Pulmonary Rehab. Based on what I'm reading I'm concerned about the qualty of the the Rehab program. It shares space/time with Cardio Rehab. It's certainly nothing like Duke. Anyone know of any good programs in the Chicago area?Peace,TedWant what you have;Be who you are:Do what you can.

[Guest guest]

hi Ted, welcome, sorry you need us, but glad you found us

abg - arterial blood gas

btw - by the way

ild -- interstitial lung disease

6mw -- 6 minute walk

lol -- lots of laughs

NSIP -- a form of ILD -- someone else will give you the meaning -

"p" usually stands for pneumonia

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: New to the GroupTo: Breathe-Support Date: Tuesday, July 7, 2009, 1:34 PM

Hi, I'm Ted from Lombard, a suburb of Chicago, Having some problems navigating/unerstan ding all your messages. I keep reading the same ones over and over. Is there any way to avoid that?Also the anacronyms are confusing: ABG's, lol, 6MWtest, ILD, NSIP, BTW. Anyone care to translate?Lastly, I've just finished 12 weeks (3 times x wk) of Cardio Rehab and am scheduled to start 10 weeks (2 times x wk) of Pulmonary Rehab. Based on what I'm reading I'm concerned about the qualty of the the Rehab program. It shares space/time with Cardio Rehab. It's certainly nothing like Duke. Anyone know of any good programs in the Chicago area?Peace,TedWant what you have;Be who you are:Do what you can.

[Guest guest]

http://noairtogo.tripod.com/gloss.htm#Alist of acronyms P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'Subject: New to the GroupTo: Breathe-Support Date:

Tuesday, July 7, 2009, 12:34 PM

Hi,

I'm Ted from Lombard, a suburb of Chicago, Having some problems navigating/unerstan ding all your messages. I keep reading the same ones over and over. Is there any way to avoid that?

Also the anacronyms are confusing: ABG's, lol, 6MWtest, ILD, NSIP, BTW. Anyone care to translate?

Lastly, I've just finished 12 weeks (3 times x wk) of Cardio Rehab and am scheduled to start 10 weeks (2 times x wk) of Pulmonary Rehab. Based on what I'm reading I'm concerned about the qualty of the the Rehab program. It shares space/time with Cardio Rehab. It's certainly nothing like Duke. Anyone know of any good programs in the Chicago area?

Peace,

Ted

Want what you have;

Be who you are:

Do what you can.

[Guest guest]

if possible, try both, and then decide which is right for you

i started with the little Helios

had a problem

they let me try the little tanks -- didn't like them -- they were too heavy

at that time i was only using demand 2

so continued with little helios

then last year when condition changed, needed more o2 -- continuous at times -- ended up with marathon

like the marathon -- need to buy metal tanks for back up for when we go away for the day if i plan on lots of walking

if i plan on lots of sitting, i fill up little helios and marathon -- they are "fraternal twins"

that's what i tell people when they see me wheeling both of them in the baby stroller

this disease if very weird -- i can sit without O2, but when i start moving around, i need o2, the level varies with the activity

sometimes i can walk the dog using demand 4, sometimes i need to walk the dog with contnuous 3

treadmill requires continuous 4

that's why the oximeter is so important

another weird thing is that i get these strange feelings in upper chest, like i am short of breath, but when i check oximeter -- sat reads 98%

so doc gave me flonase for post nasal drip

sitting quietly in house don't need o2, talking on the phone makes me cough, so i need o2 to talk on phone

it's really weird

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: New to the groupTo: Breathe-Support Date: Wednesday, August 26, 2009, 11:17 PM

Joyce,That's good to know. Dr. Raghu sent the order to reduce prednisone to my pulmo doc, who I have an appt. with on Friday. So, I thought I better wait till I seem him to tell me how to taper down. My pulmo doc got the order from Dr. R. for my oxygen need for exertion. He sent me an e-mail today saying he would put that in right away. I suppose it will be sent to Apria where I received my CPAP machine. Anything I need to know about that? From what I've read from group members, I should ask for liquid oxygen, right?

C_53_Familial IPF_5/09Washington

From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Wednesday, August 26, 2009 7:33:23 PMSubject: Re: New to the group

my pulmonary decreased the prednisone at a slower rate

from 40 to 30 for a month

30 to 25 for a month

20 for a month

15 for a month

goal was 10

it took several months

high dose was temporary -- maybe a month

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund. org

From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM

Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue

to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDovstart: 0000-00-00 end: 0000-00-00

[Guest guest]

lisa

by the way, my supplier is lincare, they also supply me with o2 when i visit my children in Florida or atlantic city

last year had long discussion with manager, that's when he sent marathon for me to try

doc's office contacted lincare when she ordered o2 for exertion and that's who i am still with

did go to another local supplier -- 7th street medical -- but they are local -- however -- they will loan their regular clients portable oxygen concentrators -- don't remember all details, meeting was last year -- they will not supply in other cities like Florida or down the shore (atlantic city)

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

Donate Life Listed 1/09 Inactive 4/09

www.transplantfund.org---

Subject: Re: New to the groupTo: Breathe-Support Date: Wednesday, August 26, 2009, 11:25 PM

, I'll stick with my canisters and Lincare. I've had a headache all day and I was cold for part of the day even though it was hot in the house. My blood sugar is low in the morning and high after I eat. I don't know if that has anything to do with it or not.Beverley Joy,71, UIP,NSIP 1-09,Diabetes, Sjogren's, Fibromyalgia Idaho

From: dovaltman <dovaltman (AT) yahoo (DOT) com>Subject: New to the groupTo: Breathe-Support@ yahoogroups. comDate: Tuesday, August 25, 2009, 10:40 PM

Hi all, I just joined the group today. I was diagnosed with idiopathic familial pulmonary fibrosis 4 years ago and I had a lung biopsy 3 years ago to confirm the diagnosis. Up until 2 weeks ago, it seemed to be dormant with no changes in my pulmonary functions. The only problem I seemed to have was my chronic dry cough. Then 2 weeks ago, after a routine pulmonary function test, we found that my lung capacity had decreased significantly and my CT scan shows that the fibrosis has increased. My doctor has now referred me to the transplant team. My doctor also put me on prednisone after being reluctant to do so. The prednisone took away my cough and did improve my breathing, however, it spiked my blood sugar to levels that sent me into the emergency room and 15 units of insulin. I was told that I was borderline diabetic, but I was always able to keep my sugar levels low through diet. So now, I am caught between a rock and a hard place, if I continue

to take the prednisone, I am going to have to take regular insulin injections and follow a strict diabetic lifestyle. If I stop, then I go back to the cough and shortness of breath while I wait for my condition to deteriorate until I need the transplant.Needless to say, I am little bummed out about this. I am looking forward to hearing from others in the group and learning more about what I can do to live with this.ThanksDovstart: 0000-00-00 end: 0000-00-00

start: 0000-00-00

end: 0000-00-00