New Member

[Guest guest]

Welcome and Congratulations! It is great that you found this group

before the birth of your child. My only advice at this point is to

enjoy every moment! Take picture of your little ones feet before you

start casting...we have a lot of baby pictures but not very many where

you can really see his feet, and this is a regret of mine! It is great

to compare before & after pictures...I have a timeline I made after

each cast, but my true before pictures are not very good because I just

took baby pictures at that point, not " feet pictures " , if that makes

sense. Second, there might be pressure at the hospital when you

deliver to begin treatment immediately. You will need to be adamant

about not starting with any other doctor than the one you have chosen.

Good luck and enjoy your little one!

Kaci (mom to , 12/17/05, bcf, FAB 18/7)

>

> Hi,

>

> My name is Ana, and I am expecting my first child in a few weeks. At

> my 20 week ultrasound our perinatologist noticed that the baby had

> bilateral clubefeet.

> After some research we decided to go with the Ponseti Method. We had

> our prenatal consultation this morning, and we are very happey with

> the decision.

> I was just wondering if anyone had any suggestions for us?

>

> Thanks

>

> Ana

>

[Guest guest]

Shelly,

I have a son who will be 5 in August. We have been seeing Dr. Dobbs

since he was 2 weeks old. He is a wonderful doctor, you will love

him! We are from KY and travel to see him--he's worth every mile! He

truly cares about his patients. I just can't say enough good things

about him. If you would like me to call you if you have any further

questions just e-mail me with your phone # pammi_kay@...

Pam

>

> Hello. My name is Shelly, and my 3 month old daughter has bilateral

> club feet. We were seeing a doctor locally, but my daughter's casts

> kept slipping. I emailed Dr. Ponseti, and after seeing some of my

> daughter's pictures he advised me that has atypical

clubfeet.

> We are going to see Dr. Dobbs at the Shriner Hospital in St. Louis

> July 17th, and I am very excited. If any of you have experience with

> Dr. Dobbs, please let me know what you think of him. Thanks!!

>

> Shelly in KS

>

[Guest guest]

>

> Hi all! New member here! My name is Janet, and I am newly divorced

> mother of two boys. Looking forward to connecting with other and

> making new aquaintances!

>

>

> -Janet

>

Welcome, Janet

Are you following the SCD Diet for yourse;f or a family member?

Carol F.

SCD 6 years, celiac

[Guest guest]

Hi ,

I am new to the diet so I don't have any advice for you but there are plenty of

people who do. I wanted to tell you that my son eats Vaseline, chapstick,

toothpaste, lotions etc, etc. I have always wondered why or what might be in

them...the toothpaste is obvious (sugar, strong sweet flavors) but Vaseline? If

anyone can tell me what it is I would appreciate it....I apologize if this is a

little off topic.

Hinojosa

3yr old boy, ASD, Began SCD Feb 14, 2007

[Norton AntiSpam] new member

Hello,

My name is Thatcher and my son is 3. An SP, 2 PT's and an

OT have pointed out his signs of ASD. He has had many of the typical

issues since birth. So this month we're going off island to get him

diagnosed officially.

I was mentioning his problems to my hydrotherapist and he told me

about BTVC. I ordered the book and am following the website.

I started with 2 days of cutting out some major startches that

he had been having and then began the intro diet on March 2. The

first day on the intro diet he began sleeping at 10:30 and either

slept or needed someone to be with him on a futon in the living room.

He was warm (usually is a cold child) and crying. He threw up his

broth with cooked carrots at first but we were able to get some in

him at dinner and he kept it down. Day 2 was a better day and he got

by with just 2 naps and got outside and played. He ate the intro

foods well. He has been straining on the toilet the last 2 days

(despite loads of water spiked with grape juice) with one constipated

stool ea. day (usually his stool is runny or very loose, undigested

food remains and he has several a day).

Since it could take a while for the book to arrive (it's usually a

sloooow boat to Hawaii!)I have a couple questions.

1) I went to the GI Pro Health website and am confused on what is

important to order right now...enzymes, minerals, pro biotics...etc

2) When do I start with probiotics or any of these other things?

3) When do I start him on the yogurt?

4) Since it's illegal in HI to buy raw goat milk and I don't have

access to a goat, can I use canned/powdered goat milk to make the

yogurt?

Thank you sooo much for this group. It has been very helpful. Even

things like the 'toothpaste' info helped since I never thought of how

he likes to eat his toothpaste (along with other non-food items

unfortunately). I hope this post is not too lengthy or lacks the

proper info. This is all is a great 'stretching' excersize for me!

But I really appreciate being able to run this by someone. I'm really

hopeful about this diet.

Thanks for your time and any help,

Thatcher

[Guest guest]

Welcome, ....

It sounds like you have seen some classic " die-off " symptoms in your little guy.

Baths with epsom salts may really help him to feel better.

Try the " Electrolyte Drink " on Elaine's website,

www.breakingtheviciouscycle.info, in the " Knowledge Base " under " E " . We often

get reports that this really helps with constipation, which is fairly common in

the beginning. It doesn't taste super wonderful, but even if you can get him to

take a few swallows, several times throughout the day, it would help.

Another thing you might try is to add a supplement of magnesium oxide or

magnesium citrate. Look for one that has no added illegals... you can compare

the label to the list of legal/illegal supplement additives on

www.pecanbread.com , under " Supplements " .

As far as products from GI Pro Health, we send SCD parents there for their

non-dairy-based acidophilus.... and/or their yogurt starter. These are

especially for families that want to remain completely free of any cow dairy....

even the slightest trace. You don't have to use their products, but their

SCDophilus is one that many SCD families do use. I'm honestly not familiar with

any of their other supplements.... just the yogurt starter.

Other than acidophilus, and possibly some magnesium, I would not be in a big

hurry to add more supplements just now. It has been my experience that kids get

off to a better start on SCD with as few supps on board as possible. I'm a big

fan of cod liver oil, and magnesium, but beyond that..... I usually suggest

waiting until the diet is well-established.

We usually suggest waiting at least a few weeks to start yogurt, for kids that

were dairy free prior to starting SCD. That way, the child is past any initial

die-off response from the diet itself, and it can be made very clear what, if

any, reaction there is to introducing the yogurt..... or additional die-off that

can sometimes be triggered by the probiotics in the yogurt.

Yes, you can use the powdered goat milk, as long as you reconstitute it to just

the normal goat milk proportion/consistancy. Don't add extra milk powder in an

effort to get a thicker yogurt. I am not sure about the canned goat milk. I

should be fine, as long as nothing has been added..... just 100% pure goat milk.

Patti, one of several list moderators

new member

Hello,

My name is Thatcher and my son is 3. An SP, 2 PT's and an

OT have pointed out his signs of ASD. He has had many of the typical

issues since birth. So this month we're going off island to get him

diagnosed officially.

I was mentioning his problems to my hydrotherapist and he told me

about BTVC. I ordered the book and am following the website.

I started with 2 days of cutting out some major startches that

he had been having and then began the intro diet on March 2. The

first day on the intro diet he began sleeping at 10:30 and either

slept or needed someone to be with him on a futon in the living room.

He was warm (usually is a cold child) and crying. He threw up his

broth with cooked carrots at first but we were able to get some in

him at dinner and he kept it down. Day 2 was a better day and he got

by with just 2 naps and got outside and played. He ate the intro

foods well. He has been straining on the toilet the last 2 days

(despite loads of water spiked with grape juice) with one constipated

stool ea. day (usually his stool is runny or very loose, undigested

food remains and he has several a day).

Since it could take a while for the book to arrive (it's usually a

sloooow boat to Hawaii!)I have a couple questions.

1) I went to the GI Pro Health website and am confused on what is

important to order right now...enzymes, minerals, pro biotics...etc

2) When do I start with probiotics or any of these other things?

3) When do I start him on the yogurt?

4) Since it's illegal in HI to buy raw goat milk and I don't have

access to a goat, can I use canned/powdered goat milk to make the

yogurt?

Thank you sooo much for this group. It has been very helpful. Even

things like the 'toothpaste' info helped since I never thought of how

he likes to eat his toothpaste (along with other non-food items

unfortunately). I hope this post is not too lengthy or lacks the

proper info. This is all is a great 'stretching' excersize for me!

But I really appreciate being able to run this by someone. I'm really

hopeful about this diet.

Thanks for your time and any help,

Thatcher

[Guest guest]

>

Welcome

Have a look at

www.pecanbread.com

Study each of the links. This will answer many of your convccerns, perhaps as

well as the

book as it is geared to ASD.

Carol F.

SCD 7 years, celiacI hope this post is not too lengthy or lacks the

[Guest guest]

Thank you Patti for your info. We did the electrolyte drink which he loved and

Epsom bath. Today he had a softer stool but it was nearly black. The loose

stools he used to have were blond. The 'sandy gritty " stool post was

enlightening as it's perplexed me too.

He's just 4 days into SCD and a two amazing things happened! Could it be working

this soon? He ate last night entirely by himself for the FIRST time in his life

(clumsy as you can imagine but with intention). No head banging, doing

repetitive tapping w/the spoon or screaming fits that usually happen at

mealtimes. My family was whooping it up for him. Then this morning I said " thank

you " to him for something and he poked his head around the corner and said

" we-come " with a big smile. I almost fell off my seat!

Thank you everyone for your posts and information.

Thatcher

new member

Hello,

My name is Thatcher and my son is 3. An SP, 2 PT's and an

OT have pointed out his signs of ASD. He has had many of the typical

issues since birth. So this month we're going off island to get him

diagnosed officially.

I was mentioning his problems to my hydrotherapist and he told me

about BTVC. I ordered the book and am following the website.

I started with 2 days of cutting out some major startches that

he had been having and then began the intro diet on March 2. The

first day on the intro diet he began sleeping at 10:30 and either

slept or needed someone to be with him on a futon in the living room.

He was warm (usually is a cold child) and crying. He threw up his

broth with cooked carrots at first but we were able to get some in

him at dinner and he kept it down. Day 2 was a better day and he got

by with just 2 naps and got outside and played. He ate the intro

foods well. He has been straining on the toilet the last 2 days

(despite loads of water spiked with grape juice) with one constipated

stool ea. day (usually his stool is runny or very loose, undigested

food remains and he has several a day).

Since it could take a while for the book to arrive (it's usually a

sloooow boat to Hawaii!)I have a couple questions.

1) I went to the GI Pro Health website and am confused on what is

important to order right now...enzymes, minerals, pro biotics...etc

2) When do I start with probiotics or any of these other things?

3) When do I start him on the yogurt?

4) Since it's illegal in HI to buy raw goat milk and I don't have

access to a goat, can I use canned/powdered goat milk to make the

yogurt?

Thank you sooo much for this group. It has been very helpful. Even

things like the 'toothpaste' info helped since I never thought of how

he likes to eat his toothpaste (along with other non-food items

unfortunately). I hope this post is not too lengthy or lacks the

proper info. This is all is a great 'stretching' excersize for me!

But I really appreciate being able to run this by someone. I'm really

hopeful about this diet.

Thanks for your time and any help,

Thatcher

[Guest guest]

,

All kinds of color changes in the stool are very common in the beginning, as gut

pathogens die off.

YES.... SCD could be working this soon! What great news! I'm thrilled for

you.

I just love those " almost fell off my chair " moments.

Patti

Re: new member

Thank you Patti for your info. We did the electrolyte drink which he loved and

Epsom bath. Today he had a softer stool but it was nearly black. The loose

stools he used to have were blond. The 'sandy gritty " stool post was

enlightening as it's perplexed me too.

He's just 4 days into SCD and a two amazing things happened! Could it be

working this soon? He ate last night entirely by himself for the FIRST time in

his life (clumsy as you can imagine but with intention). No head banging, doing

repetitive tapping w/the spoon or screaming fits that usually happen at

mealtimes. My family was whooping it up for him. Then this morning I said " thank

you " to him for something and he poked his head around the corner and said

" we-come " with a big smile. I almost fell off my seat!

Thank you everyone for your posts and information.

Thatcher

Recent Activity

a.. 16New Members

Visit Your Group

[Guest guest]

Hi, The first thing is try to not fear this monster. I am so sorry you need us but you will learn how to live with this disease here. You could never find a better group. Everyone here is helpful. Ask anything, vent all you want or need.We all fight it head on as much as possible. Go on line and order an oximeter. you can find them for about 65.00they are life savers. They help you keep track of your saturation and you will know when you need to slow down. Your Dr. will probably tell you you will drive yourself nuts with it but I am sure everyone on this board will agree, get one ASAP.God Bless you with strength and peace. Love & PrayersPeggy, IPF 2004

I am new to the group. I went to the ER September 14th for shortness of breath and extreme fatigue. My CT showed scarring in my lungs and I had a blocked coronary artery. I had a stent put in my artery the next day. My pulmonologist performed a lung function test and determined that I have interstitial lung disease (moderately severe). He then performed a broncoscopy but did not get a diagnosis. He wants to do an open lung biopsy but the cardiologist does not want me to stop taking Plavix and it is dangerous to have the surgery. I am not waiting until June to see if I can stop the Plavix for the biopsy. I feel like I am in limbo waiting. I have good days and days with much shortness of breath. I am not on oxygen yet. Will the wait make things much worse for my lungs? Thanks for your help...

[Guest guest]

DS

I don't know where you are or where these doctors are nor even your name

for that matter. However, the first thing that strikes me is a need for

you to get to a teaching hospital with an ILD center such as one of the

IPF Centers of Excellence. You have a very complicated situation and

most doctors and facilities are not well equipped to deal with it

correctly. You need to have copies of all that has taken place and

understand the reports. Was it a HRCT (High Resolution) and did it

indicate an Interstitial Lung Disease? Did it give a clue as to which

one? I'm assuming it did at least indicate one based on the scarring you

mention.

What were your PFT's like. Was it the CT or the PFT's that led the

pulmonologist to say ILD? What did the broncoscopy indicate? If you

haven't seen the report make sure you get a copy.

Now he wants to do what you refer to as an open lung biopsy but I'm

assuming it would be a VATS. You're not on oxygen. Then how bad are your

lungs? What are your PFT's? How much is related to your artery issues

and perhaps heart related?

Yes, I've asked a lot of questions but I'd want answers to all those by

doctors expert in the diseases before deciding to do anything else. I

understand your cardiologist's hesistation and it sounds like most

immediately your arteries put you in more danger than your lungs did. If

thats the case, maybe they get the immediate priority.

If your interstitial lung disease is " moderately severe " then you should

be on oxygen. Did you have a six minute walk? What is your oxygen

saturation like at the end of six minutes of exertion or during

activity? If he didn't check that and only checked your saturations at

rest then he doesn't have adequate knowledge of pulmonary fibrosis. But

" moderately severe " and " no oxygen " don't fit. I guess perhaps I'm

moderately severe but if I wasn't on oxygen my saturation would drop to

the 80%'s walking across the room and the 70's with moderated exertion

and even 50's and 60's while under greater exertion. Yet, I can sit here

on the sofa typing and I'm at 95% right now with no oxygen on. I'm

guessing you probably don't have an oximeter. If not, get one

immediately.

Will the wait make things that much worse on your lungs? No one knows

because we don't know what is wrong with your lungs or whether its

something that could and should be treated. Will getting off Plavix and

having a very invasive surgery (which the biopsy is) put you at greater

risk? Very well might. And I certainly wouldn't take that risk without

being absolutely sure why I was doing to and that the alternatives had

been carefully thought out.

I don't know where you are to recommend a facility to go to, but some of

the better ones for ILD's are listed here:

www.ipfnet.org

Don't let anyone make you feel pressured to jump into something. If you

don't even need oxygen yet you're not in an situation that you should

panic and undertake risk to have an invasive procedure that may or may

not provide any useful information. Have you had full labs for

connective tissue diseases? If not, you need those as well (an ILD

center would do so). How old are you? I ask because that could give some

clue into certain likelihoods although nothing absolute.

I know I've probably confused you even more, but these are the types

questions we'll help you work through so you can understand. It's not a

simple situation and not one to jump into a biopsy without knowing much

more than you've shared with us at least.

>

> I am new to the group. I went to the ER September 14th for shortness

of breath and extreme fatigue. My CT showed scarring in my lungs and I

had a blocked coronary artery. I had a stent put in my artery the next

day. My pulmonologist performed a lung function test and determined

that I have interstitial lung disease (moderately severe). He then

performed a broncoscopy but did not get a diagnosis. He wants to do an

open lung biopsy but the cardiologist does not want me to stop taking

Plavix and it is dangerous to have the surgery. I am not waiting until

June to see if I can stop the Plavix for the biopsy. I feel like I am

in limbo waiting. I have good days and days with much shortness of

breath. I am not on oxygen yet. Will the wait make things much worse

for my lungs? Thanks for your help...

>

[Guest guest]

DS

Bruce,as always, did such a wonderful job psting to your quiry. Before I thought any further about having an open-lung biopsy, I would go to that website, and then make an appointment with one of the ILD centers of excellence. Until then, purchase and use an oxymeter daily, and you'll begin to understand your oxygen needs well enough o discuss them with your pulmonologist. Any pulmonologist worth his/her salt should be more than willing for you to have a second oinion.

Welcome to the group. As you can already see, this is a place to come for information, undestanding as well as a place to just speak your mind about what life fois like after diagnosis.

Several of us have lived long beyond what you might expect after reading about PF, so take heart, and most of all, take good care of yourself.

Jerry/Mississipp54/IPF/dx April05Who believes that hard times help us appreciate the good times even more.

[Guest guest]

Good morning and welcome to Breathe Support. I always have mixed feelings in welcoming a new member...glad you found us but sorry you have reason to look for us.

You don't mention where you are so it's impossible to make specific suggestions but I can't recommend strongly enough that you seek out a specialist in interstitial lung disease. Bruce already posted this link but I'll post it again for good measure. www.ipfnet.org There are listed I think, 22 different university medical centers with the kinds of specialists that we need. If you are not near one of these, let us know where you are and we may be able to make suggestions. This is not to say your pulmonologist isn't perfectly competent. The reality however is that ILD's are fairly uncommon and most community based pulmos don't see a lot of it. For the most part they treat things like emphysema, asthma, COPD and these are completely different from what we are dealing with.

You mention that you've had a ct scan. High resolution ct scans are the standard to be able to gain useful information with ILD's. If you haven't had one, it's absolutely necessary. That alone may give you a very good idea of which ILD you actually have. You need to have screening bloodwork for all kinds of connective tissue/auto immune diseases. An extremely detailed personal history needs to be taken. All of these things can and will be done in a place where they see ILD's every single day.

Your cardiac issues make surgery much more problematic. To me this is all the more reason to seek out experts in your lung disease. If at some point you do decide to have a biopsy, you want to have it done where your complete situation is taken into account.

Have you had a 6 minute walk? If not, ask your doctor. That will help determine whether you actually need oxygen. I'm confused about your "moderately severe" diagnosis but not needing oxygen.

In the meantime buy yourself an oximeter. You can buy one for about $65 here: http://www.portablenebs.com/choiceoximeter.htm You want to make sure your O2 saturations stay over 90%. Check when you're moving around, walking, carrying groceries etc. If they are consistently dropping below 90, please let your doctor know immediately. Low oxygen levels will stress your heart which is not what you need.

Keep reading the board and asking questions. There is no such thing as a dumb question. We all understand what you are going through. We help each other and somehow that does make the journey a bit easier.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sat, December 26, 2009 10:16:12 PMSubject: new member

I am new to the group. I went to the ER September 14th for shortness of breath and extreme fatigue. My CT showed scarring in my lungs and I had a blocked coronary artery. I had a stent put in my artery the next day. My pulmonologist performed a lung function test and determined that I have interstitial lung disease (moderately severe). He then performed a broncoscopy but did not get a diagnosis. He wants to do an open lung biopsy but the cardiologist does not want me to stop taking Plavix and it is dangerous to have the surgery. I am not waiting until June to see if I can stop the Plavix for the biopsy. I feel like I am in limbo waiting. I have good days and days with much shortness of breath. I am not on oxygen yet. Will the wait make things much worse for my lungs? Thanks for your help...

[Guest guest]

Thank you all for your ideas and support. My name is Donna and I live in

Lafayette Indiana. I am 59 years old.

Bruce, The HRCT showed scarring. I have had two. The PFTs led to the ILD

diagnosis. The doc said the PFT diffusion results showed moderately severe

disease. He said the broncoscopy did not provide a diagnosis. I do not have

copies of any of my test and need to get them.

The pulmonologist sent me to a Rheumatologist due to some abnormal test results.

The Rheumotologist ruled out inflammatory diseases.

Sure sounds like I need to learn more about my results. It has been so

confusing with all the different docs. Thank you again.

> >

> > I am new to the group. I went to the ER September 14th for shortness

> of breath and extreme fatigue. My CT showed scarring in my lungs and I

> had a blocked coronary artery. I had a stent put in my artery the next

> day. My pulmonologist performed a lung function test and determined

> that I have interstitial lung disease (moderately severe). He then

> performed a broncoscopy but did not get a diagnosis. He wants to do an

> open lung biopsy but the cardiologist does not want me to stop taking

> Plavix and it is dangerous to have the surgery. I am not waiting until

> June to see if I can stop the Plavix for the biopsy. I feel like I am

> in limbo waiting. I have good days and days with much shortness of

> breath. I am not on oxygen yet. Will the wait make things much worse

> for my lungs? Thanks for your help...

> >

>

[Guest guest]

Donna

If the HRCT didn't lead to ILD diagnosis then the PFT can't. DLCO on a

PFT can vary widely between two times and if this was your first time

doing a PFT you could have been lousy at it. It is not uncommon to show

50% one time and 35% the next then 50% the third. The more common way of

distinguishing obstructive versus restrictive is to look at the

relationship between the FVC and the FEV1 but thats far from foolproof

as well on just one test. If you believed my test from February 2008 I'd

long ago have been dead, but my problem (I figured out later) was the

mouthpiece was too large for me.

As to the rheumatologist, an ILD center typically checks for far more

things than a regular rheumatologist. Now, my current rheumatologist is

very thorough but I had one who basically was looking for Lupus or RA

and if you didn't have those, he was through.

As Beth pointed out too, your history and clinical observations are

very important to the diagnosis. So, first steps in taking control are

1-Order an oximeter, 2-Get copies of all your tests and labs and reports

and digital copies of your CT's, 3-Get to an ILD center for a second

opinion.

On your CT, did they have you do a lot of breathing in and out and

holding? The average doctors facility does not have HRCT, just CT. Also,

for ILD's they go back and do CT's with you inspiring and exhaling to

focus on the lungs and not the chest in general. So, even those on the

same equipment are done following a different protocol.

I know again it's overwhelming but you do the three things I'm indicated

above and stay with us here and you'll feel much more in control. Only

when you know more will you know whether a VATS biopsy makes sense or

whether monitoring it further is more appropriate.

> > >

> > > I am new to the group. I went to the ER September 14th for

shortness

> > of breath and extreme fatigue. My CT showed scarring in my lungs

and I

> > had a blocked coronary artery. I had a stent put in my artery the

next

> > day. My pulmonologist performed a lung function test and determined

> > that I have interstitial lung disease (moderately severe). He then

> > performed a broncoscopy but did not get a diagnosis. He wants to do

an

> > open lung biopsy but the cardiologist does not want me to stop

taking

> > Plavix and it is dangerous to have the surgery. I am not waiting

until

> > June to see if I can stop the Plavix for the biopsy. I feel like I

am

> > in limbo waiting. I have good days and days with much shortness of

> > breath. I am not on oxygen yet. Will the wait make things much

worse

> > for my lungs? Thanks for your help...

> > >

> >

>

[Guest guest]

Bruce,

Again, thank you. I have another PFT scheduled in March. I really respect my pulmonologist and think I will discuss going to a ILD center with him in March. I am ordering the oximeter today.

I did lots of breathing in, out and holding my breath for the CT.

You have given me lots to think about. I appreciate your help very much.

Donna

Re: new member

DonnaIf the HRCT didn't lead to ILD diagnosis then the PFT can't. DLCO on aPFT can vary widely between two times and if this was your first timedoing a PFT you could have been lousy at it. It is not uncommon to show50% one time and 35% the next then 50% the third. The more common way ofdistinguishing obstructive versus restrictive is to look at therelationship between the FVC and the FEV1 but thats far from foolproofas well on just one test. If you believed my test from February 2008 I'dlong ago have been dead, but my problem (I figured out later) was themouthpiece was too large for me.As to the rheumatologist, an ILD center typically checks for far morethings than a regular rheumatologist. Now, my current rheumatologist isvery thorough but I had one who basically was looking for Lupus or RAand if you didn't have those, he was through.As Beth pointed out too, your history and clinical observations arevery important to the diagnosis. So, first steps in taking control are1-Order an oximeter, 2-Get copies of all your tests and labs and reportsand digital copies of your CT's, 3-Get to an ILD center for a secondopinion.On your CT, did they have you do a lot of breathing in and out andholding? The average doctors facility does not have HRCT, just CT. Also,for ILD's they go back and do CT's with you inspiring and exhaling tofocus on the lungs and not the chest in general. So, even those on thesame equipment are done following a different protocol.I know again it's overwhelming but you do the three things I'm indicatedabove and stay with us here and you'll feel much more in control. Onlywhen you know more will you know whether a VATS biopsy makes sense orwhether monitoring it further is more appropriate.> > >> > > I am new to the group. I went to the ER September 14th forshortness> > of breath and extreme fatigue. My CT showed scarring in my lungsand I> > had a blocked coronary artery. I had a stent put in my artery thenext> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to doan> > open lung biopsy but the cardiologist does not want me to stoptaking> > Plavix and it is dangerous to have the surgery. I am not waitinguntil> > June to see if I can stop the Plavix for the biopsy. I feel like Iam> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things muchworse> > for my lungs? Thanks for your help...> > >> >>

[Guest guest]

Bruce......When I had the CT scan at U of C I told my husband that was the first time I had ever been told to hold my breath several different ways during the scan. I had three previous scans done locally and never had to hold my breath.

Another incentive to get to a teaching hospital.

Patti Indianapolis IPF 2007

[Guest guest]

Donna

I personally wouldn't wait until March to schedule at one but your

pulmonologist should be in favor. We're not talking about respect for a

pulmonologist but we're talking about what they deal with every day. An

ILD center only deals with ILD's. A typical pulmonologist will have no

more than 1 or 2 patients with ILD's and some have none. I have a great

local pulmonologist who does have PF experience, but I still go to ILD

centers for more expertise. My local rheumatologist, I also respect

greatly, but he's the one pushing me hard to go to Duke for another

review.

There is just too much disconnect when you're told " moderately severe "

and you're not put on oxygen. Did you have a 6 minute walk test?

> > > >

> > > > I am new to the group. I went to the ER September 14th for

> shortness

> > > of breath and extreme fatigue. My CT showed scarring in my lungs

> and I

> > > had a blocked coronary artery. I had a stent put in my artery

the

> next

> > > day. My pulmonologist performed a lung function test and

determined

> > > that I have interstitial lung disease (moderately severe). He

then

> > > performed a broncoscopy but did not get a diagnosis. He wants to

do

> an

> > > open lung biopsy but the cardiologist does not want me to stop

> taking

> > > Plavix and it is dangerous to have the surgery. I am not waiting

> until

> > > June to see if I can stop the Plavix for the biopsy. I feel like

I

> am

> > > in limbo waiting. I have good days and days with much shortness

of

> > > breath. I am not on oxygen yet. Will the wait make things much

> worse

> > > for my lungs? Thanks for your help...

> > > >

> > >

> >

>

[Guest guest]

No, never had the walk test. Lots to think about.

Re: new member

DonnaI personally wouldn't wait until March to schedule at one but yourpulmonologist should be in favor. We're not talking about respect for apulmonologist but we're talking about what they deal with every day. AnILD center only deals with ILD's. A typical pulmonologist will have nomore than 1 or 2 patients with ILD's and some have none. I have a greatlocal pulmonologist who does have PF experience, but I still go to ILDcenters for more expertise. My local rheumatologist, I also respectgreatly, but he's the one pushing me hard to go to Duke for anotherreview.There is just too much disconnect when you're told "moderately severe"and you're not put on oxygen. Did you have a 6 minute walk test?> > > >> > > > I am new to the group. I went to the ER September 14th for> shortness> > > of breath and extreme fatigue. My CT showed scarring in my lungs> and I> > > had a blocked coronary artery. I had a stent put in my arterythe> next> > > day. My pulmonologist performed a lung function test anddetermined> > > that I have interstitial lung disease (moderately severe). Hethen> > > performed a broncoscopy but did not get a diagnosis. He wants todo> an> > > open lung biopsy but the cardiologist does not want me to stop> taking> > > Plavix and it is dangerous to have the surgery. I am not waiting> until> > > June to see if I can stop the Plavix for the biopsy. I feel likeI> am> > > in limbo waiting. I have good days and days with much shortnessof> > > breath. I am not on oxygen yet. Will the wait make things much> worse> > > for my lungs? Thanks for your help...> > > >> > >> >>

[Guest guest]

Donna

Let me explain what that tells me and why so significant. You can't

determine oxygen needs without checking under exertion. I suspect you

had an oximeter stuck on your finger but you were sitting. For COPD

patients that is a normal procedure. They will normally need it seated

if they need it for exertion and not show a tremendous difference. For

PF patients, checking under activity is critical. It is very normal for

us, especially at earlier stages, to not need oxygen when seated but to

need it when active. I can sit much of the time without it. But under

exertion, I can't go without. I require 3 lpm to 5 lpm depending on what

I'm doing. So, while your pulmonologist may be great, just something as

simple as this shows that his methods are not aimed toward Interstitial

Lung Diseases.

I'm very anxious to see what your oximeter tells you under exertion.

Hopefully it will be ok and show you are above 90% at all times. If it

shows that, then you are quite far from anything I'd call " moderately

severe. " If it shows your saturations drop though, then getting oxygen

quickly will become a priority. (Actually medicare and most insurers use

88% on a six minute walk as their cut off).

> > > > >

> > > > > I am new to the group. I went to the ER September 14th for

> > shortness

> > > > of breath and extreme fatigue. My CT showed scarring in my

lungs

> > and I

> > > > had a blocked coronary artery. I had a stent put in my artery

> the

> > next

> > > > day. My pulmonologist performed a lung function test and

> determined

> > > > that I have interstitial lung disease (moderately severe). He

> then

> > > > performed a broncoscopy but did not get a diagnosis. He wants

to

> do

> > an

> > > > open lung biopsy but the cardiologist does not want me to stop

> > taking

> > > > Plavix and it is dangerous to have the surgery. I am not

waiting

> > until

> > > > June to see if I can stop the Plavix for the biopsy. I feel

like

> I

> > am

> > > > in limbo waiting. I have good days and days with much

shortness

> of

> > > > breath. I am not on oxygen yet. Will the wait make things much

> > worse

> > > > for my lungs? Thanks for your help...

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Bruce,

That is useful info. I ordered the oximeter this morning. I will let you know the outcome. Thanks so much!

Re: new member

DonnaLet me explain what that tells me and why so significant. You can'tdetermine oxygen needs without checking under exertion. I suspect youhad an oximeter stuck on your finger but you were sitting. For COPDpatients that is a normal procedure. They will normally need it seatedif they need it for exertion and not show a tremendous difference. ForPF patients, checking under activity is critical. It is very normal forus, especially at earlier stages, to not need oxygen when seated but toneed it when active. I can sit much of the time without it. But underexertion, I can't go without. I require 3 lpm to 5 lpm depending on whatI'm doing. So, while your pulmonologist may be great, just something assimple as this shows that his methods are not aimed toward InterstitialLung Diseases.I'm very anxious to see what your oximeter tells you under exertion.Hopefully it will be ok and show you are above 90% at all times. If itshows that, then you are quite far from anything I'd call "moderatelysevere." If it shows your saturations drop though, then getting oxygenquickly will become a priority. (Actually medicare and most insurers use88% on a six minute walk as their cut off).> > > > >> > > > > I am new to the group. I went to the ER September 14th for> > shortness> > > > of breath and extreme fatigue. My CT showed scarring in mylungs> > and I> > > > had a blocked coronary artery. I had a stent put in my artery> the> > next> > > > day. My pulmonologist performed a lung function test and> determined> > > > that I have interstitial lung disease (moderately severe). He> then> > > > performed a broncoscopy but did not get a diagnosis. He wantsto> do> > an> > > > open lung biopsy but the cardiologist does not want me to stop> > taking> > > > Plavix and it is dangerous to have the surgery. I am notwaiting> > until> > > > June to see if I can stop the Plavix for the biopsy. I feellike> I> > am> > > > in limbo waiting. I have good days and days with muchshortness> of> > > > breath. I am not on oxygen yet. Will the wait make things much> > worse> > > > for my lungs? Thanks for your help...> > > > >> > > >> > >> >>

[Guest guest]

Donna,

Welcome to this wonderful Air Family even though I'm sure it's the last place

you'd ever want to qualify to join.

You have been given some absolutely terrific advice so far from this group, but

I just want to share one additional thing about the possible rheumatology

indications in your blood work up.

My pulmonologist did the exact same thing w/me & my rheumatologist also said the

same as yours after taking several X-rays of my joints. Despite that

non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really

convincing repeat blood tests & he plans to start treating me for it in January

w/Prednisone. He claims to have known patients like me who didn't outwardly

manifest RA for another couple years after the initial diagnosis.

Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay

for that & he often really ticks me off for what I consider a lack of treatment,

but this time he seems to be actually pushing me to try a treatment that has

worked for many ILD/PF patients w/an additional interconnective tissue disease

like RA.

The operative phrase here is that treatment OFTEN WORKS for these patients & can

extend their life expectancy dramatically. So make sure you get all the

information possible & don't just rely on a local RA doc. There are people on

this board who have gone 3 years with ILD/PF before finally being diagnosed with

underlying RA.

BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I

think much of it (minus the cardiac info) would be a great addition to our book.

Hope that's OK w/you.

Cees, S Calif

IPF/UIP 10/08

> > >

> > > I am new to the group. I went to the ER September 14th for shortness

> > of breath and extreme fatigue. My CT showed scarring in my lungs and I

> > had a blocked coronary artery. I had a stent put in my artery the next

> > day. My pulmonologist performed a lung function test and determined

> > that I have interstitial lung disease (moderately severe). He then

> > performed a broncoscopy but did not get a diagnosis. He wants to do an

> > open lung biopsy but the cardiologist does not want me to stop taking

> > Plavix and it is dangerous to have the surgery. I am not waiting until

> > June to see if I can stop the Plavix for the biopsy. I feel like I am

> > in limbo waiting. I have good days and days with much shortness of

> > breath. I am not on oxygen yet. Will the wait make things much worse

> > for my lungs? Thanks for your help...

> > >

> >

>

[Guest guest]

Cees,

Thank you for this info. You all have made me feel welcome and not so alone.

I feel my pulmonologist thinks I have a RA disease also. I had x-rays and the rheumatologist said I just have moderate arthritis. My thumbs hurt so bad sometimes. Would a lung biopsy prove it to be the cause of ILD? I so hope the meds help you. Please keep us informed.Thanks again...

Donna

Re: new member

Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment, but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >> > > I am new to the group. I went to the ER September 14th for shortness> > of breath and extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> > >> >>

[Guest guest]

Donna,

The biopsy would not show a cause of your fibrosis. What it would show is what type of fibrosing lung condision you have. Some are more typically associated with auto immune/connective tissue diseases than others. What diagnoses the RA is bloodwork and even then it can take multiple tries of the same blood test before it finally shows up.

To use myself as an example, my lung biopsy in 2006 showed that I have fibrotic NSIP. NSIP is commonly associated with connective tissue disease and two years later in late 2008 I was finally diagnosed with dermatomyositis an inflammatory muscle condition that sometimes causes pulmonary fibrosis. I am now being treated specifically for the dermatomyositis with the intention of controling it and slowing the progress of my lung disease.

It can take a long time to chase down these diagnosis' but it's worth the effort since treating the connective tissue disease often stablizes the lung disease.

Hope that makes some sense.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Sun, December 27, 2009 4:05:48 PMSubject: Re: Re: new member

Cees,

Thank you for this info. You all have made me feel welcome and not so alone.

I feel my pulmonologist thinks I have a RA disease also. I had x-rays and the rheumatologist said I just have moderate arthritis. My thumbs hurt so bad sometimes. Would a lung biopsy prove it to be the cause of ILD? I so hope the meds help you. Please keep us informed.Thanks again...

Donna

Re: new member

Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment,

but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >> > > I am new to the group. I went to the ER September 14th for shortness> > of breath and

extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> > >> >>

[Guest guest]



Beth,

It makes sense. Hope my questions are not too silly. I do not know much about ILD and the docs do not always get easy answers. I appreciate your help.

Donna

Re: new member

Donna,Welcome to this wonderful Air Family even though I'm sure it's the last place you'd ever want to qualify to join.You have been given some absolutely terrific advice so far from this group, but I just want to share one additional thing about the possible rheumatology indications in your blood work up. My pulmonologist did the exact same thing w/me & my rheumatologist also said the same as yours after taking several X-rays of my joints. Despite that non-diagnosis, my pulmodoc is still pretty convinced I have RA based on really convincing repeat blood tests & he plans to start treating me for it in January w/Prednisone. He claims to have known patients like me who didn't outwardly manifest RA for another couple years after the initial diagnosis.Granted, he's not a Center of Excellence pulmodoc because my insurance won't pay for that & he often really ticks me off for what I consider a lack of treatment, but this time he seems to be actually pushing me to try a treatment that has worked for many ILD/PF patients w/an additional interconnective tissue disease like RA.The operative phrase here is that treatment OFTEN WORKS for these patients & can extend their life expectancy dramatically. So make sure you get all the information possible & don't just rely on a local RA doc. There are people on this board who have gone 3 years with ILD/PF before finally being diagnosed with underlying RA.BTW Bruce, your advice to Donna was so absolutely perfect & succinct that I think much of it (minus the cardiac info) would be a great addition to our book. Hope that's OK w/you.Cees, S CalifIPF/UIP 10/08> > >> > > I am new to the group. I went to the ER September 14th for shortness> > of breath and extreme fatigue. My CT showed scarring in my lungs and I> > had a blocked coronary artery. I had a stent put in my artery the next> > day. My pulmonologist performed a lung function test and determined> > that I have interstitial lung disease (moderately severe). He then> > performed a broncoscopy but did not get a diagnosis. He wants to do an> > open lung biopsy but the cardiologist does not want me to stop taking> > Plavix and it is dangerous to have the surgery. I am not waiting until> > June to see if I can stop the Plavix for the biopsy. I feel like I am> > in limbo waiting. I have good days and days with much shortness of> > breath. I am not on oxygen yet. Will the wait make things much worse> > for my lungs? Thanks for your help...> > >> >>

[Guest guest]

Donna

Your questions are quite normal and appropriate. The reality is that

here on this forum there are more patients with PF than the average

doctor sees in a lifetime. Now, the ILD centers see many but there are

doctors who never see or diagnose PF. Chasing a connective tissue

disease can be a challenge but the chase toward figuring things out the

best possible is worth the effort. Even if the CT's and bronch are not

conclusive, there must be some information that they do have and doctors

should be forming opinions at least as to possibilities versus

exclusions. Now, determining any connective tissue disease is also a

matter of clinical diagnosis and not just tests. Putting your history,

your current symptoms and the way your body is reacting, and the labs

and tests together is a complex puzzle. It's also one that changes as

new clues develop. There may be some other symptoms or issues that you'd

never think to connect but that give additional clues.

> > > >

> > > > I am new to the group. I went to the ER September 14th for

shortness

> > > of breath and extreme fatigue. My CT showed scarring in my

lungs and I

> > > had a blocked coronary artery. I had a stent put in my artery

the next

> > > day. My pulmonologist performed a lung function test and

determined

> > > that I have interstitial lung disease (moderately severe). He

then

> > > performed a broncoscopy but did not get a diagnosis. He wants

to do an

> > > open lung biopsy but the cardiologist does not want me to stop

taking

> > > Plavix and it is dangerous to have the surgery. I am not

waiting until

> > > June to see if I can stop the Plavix for the biopsy. I feel

like I am

> > > in limbo waiting. I have good days and days with much

shortness of

> > > breath. I am not on oxygen yet. Will the wait make things much

worse

> > > for my lungs? Thanks for your help...

> > > >

> > >

> >

>