Hello

April 9, 2001

Welcome Christy! I know you'll love this diet and the list. I have lost 50lbs

since January! Good luck!

Kim C.

April 10, 2001

Hello ...Welcome aboard the lowcarb train...This jourey takes you to success!!!!!

April 10, 2001

Hello ...Welcome aboard the lowcarb train...This jourey takes you to success!!!!!

April 10, 2001

Well Terry, if the Lord doesn't give you strength, there are about 600 +

people that could give you a kindly kick in the backside to get you back on

track. Of course, I couldn't be one of them as I can't kick someone (kindly

or not) for not being able to do the same thing that I struggle with.

Jean

190/142.5/135

12/7/98

April 23, 2001

Welcome Kasaundra!

April 23, 2001

Welcome Kausaundra...

-Marlena

>From: kasaundra.neel@...

>Reply-To: Atkins_Support_List

>To: Atkins_Support_List

>Subject: Hello

>Date: Mon, 23 Apr 2001 15:45:33 -0500

>

>Well, I have been lurking for a little while and am restarting induction

>today 4/23. My name is Kasaundra, I have been afraid to post (might fall

>again) and didn't want to set myself up for any more embarrassment that

>I already feel. I was on plan last year and lost great 35lbs (20 of

>which I have gained back). I am here an determined to make this work

>this time. From everything I have read this really seems to be a

>fantastic group and I am using Terry's menus as a guide this time (thank

>you).

>

>Kasaundra

>200/200/140

>

_________________________________________________________________

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December 13, 2007

Hey Bruce,

Thank you for the encouragement, it is much needed. Well so far, we did the open lung biopsy because the found honey-combing in the lower lobes of my lung which made them do a full chest CT. The Mayo clinic did a second opinion on the biopsy and confirmed it was IPF. It started 30 days from my 30th birthday, so that was an even bigger hit. Since the biopsy, they had me on predisone 60 MG for about 3 months and my body wasn't responding it actually made me feel terrible and my pulmonologist took me off it pretty quick. After 2 week of being off the prednisone she put me on imuran, that lasted about 3 weeks and I my body didn't like that at all so we stopped that also. While taking both of these meds she had me try that NAC stuff thats herbal. All of this stopped in May, she just took me off everything. So 2 weeks ago I went for my 4th PFT and she said I have lost lung volumes and my hemoglobin levels have dropped. She said it was significant but didn't elaborate anymore than that, she said it could be because I have been sick. My family doctor was treating me for bronchitis, then possible pneumonia, now I suppose it is just a cold I can't kick so my pulmonogist put me back on prednisone 20MG daily and nystatin for the thrush I have and augmentin to try and kick the sickness. When all this started she thought maybe i had respiratory pneumonitis but when she got the second report confirming from the mayo clinic its been downhill since. I am not on oxygen and don't know what's going to be next. I know that my body hurts and aches, i get headaches and am short of breath with almost any activity, i still try to do my normal things but i get light headed and very aggravated from how winded i get. I did also have an echocardiogram which showed the right side of my heart is a little thicker than the other, I don't know what that means either. I know that there are times when i feel like my heart is beating really fast and it makes me feel weird. I have a constant tightness in my chest and shake a lot. I know this is a lot of information and your right I have to be firm with my doc's and make them explain this to me. I get afraid sometimes that they don't take me serious. I have been fighting with trying to control this and lead a normal life but keep getting thrown HUGE hurdles and get so angry. Just last year I was healthy, i just got bronchitis and pneumonia a lot. I have been to the recommended sites you have provided and have donated my medical records to the Coalition for IPF. I sure appreciate you taking time to read and respond to my posting, it really means a lot.

Thank you!

Re: HelloTo: Breathe-Support > Venting r Us.> > Welcome aboard. You have every reason and right to vent.> > We will be glad to attempt to answer every question you have > that we > can. However, first thing I say is either insist those doctors > explain to your satisfaction or see others or both. Until > they've > answered all your questions (at least all those that are > answerable) > they haven't completed there job.> > Are you on oxygen? How long does your oxygen level drop under > different circumstances? > > Was the biopsy read by more than one set of pathologists? If > not, I > might suggest having it sent off as well. Mine was read locally > and > by Mayo Clinic.> > Its ok to be scared....we all are, more sometimes than others. I > think we all have now 6 steps to go through....was 5, but had > assistance from the fun factory in the past few days.> > DECALF> > Diagnosis-Get a diagnosis that you have confidence in, > regardless of> what process it requires. Generally this diagnosis comes as a > shock to> us. (You haven't really even completed this and its frustrating. > They > say IPF and then throw you by saying too young (which would > imply > other forms of PF and then you're sob and yet they aren't > telling you > what to do. You must take control of your medical management to > insist this is done to your satisfactory.> > Education-Educate yourself in every way about your disease, your> treatment options, what to expect, and how to live with your disease.> Ask all your questions so you can make informed choices. (Go to > your > doctor with every question you have. Don't let him go until he > answers. They think sometimes they will diagnose and thats it. > Well, > its not. And your diagnosis isn't clear. With an open lung > biopsy it > should be, but at least they haven't made it so to you.> > Control-Take control both of your medical treatment and of your life> plan. Our initial temptation is to feel helpless facing a > monster we> can't overcome. This is the acceptance stage when we realize we can't> control the diagnosis, but we can still control how we go forward.> > Action-Take actions in all areas of your life based on the > control you> realized you have. Get the treatment you decided on. Make the life> choices you decided were appropriate. This reaffirms your > control and> gives you the true sense of empowerment.> > Live-Learn to live with the disease. Make the most of every day based> on your status at that time. If you're able to get out and about on> oxygen, hook up and go. When you just have enough energy to step > out > to the yard for an hour at a time take full advantage of that > hour. > Savor every pleasure more than you ever knew how before.> > Fun-Have fun. Sounds impossible but it isn't. threw a > whiskey > party in this room this weekend and we all had fun. Some had too > much > (Sher). I had fun when I saw Joyce here this morning and her > icon for > the grumpies. I'm planning so many things, all with some > limitations, > but all which I intend to have some fun doing.> > I also refer you to these two sites:> > http://www.pulmonaryfibrosis.org/> > http://www.coalitionforpf.org/> > Now, once you've got the information you'll have many decisions > to > make. We'll support you through them. Remember they are your > decisions, not the doctors, not friends or family. I would be > curious > as to why the open lung biopsy and that decision? If you didn't > make > it yourself, fully informed, don't let that happen again. You'll > have > to decide on medications or treatments such as imuran and > prednisone. > We'll discuss the pros and cons here with you. You'll have to > decide > whether to participate in any clinical trials. You'll ultimately > have > to decide whether to get into a transplant program (where your > age > actually gives you an advantage). You'll need to take care of > yourself in every way possible. > > PF is not treatable or curable. Many do use imuran and > prednisone to > slow the progression but they do have great side effects. IPF, > of all > versions, is generally helped the least by them, if at all, and > has > the shortest lifespan. Thats the bad.> > Now some good. There are so many programs underway working on > treatments. We are reading more promising news every day. I see > more > hope today than I did a very short while ago. At your age, they > are > more likely to be there for you. Some clinical trials are > nearing an > end and some of those medications may shortly be in use. > > And, transplants. They are the final step but in a young, > otherwise > healthy person the success rate would be higher. The more done > the > better the results too. Who knows how good they will be by the > time > you reach that point as they are only done as you get much > nearer to > death.> > Its a lot to digest. So, you did step one...you found some > people to > support you and to vent to. Step two, get a diagnosis you > understand > and are sure of. Its quite common for us to have been through > multiple pulmonologists. But its your life and don't settle for > less > than answers to all your questions. The one they can't answer > is "why" but even there you do need to be sure you've been > adequately > tested for other diseases which can sometimes accompany such as > autoimmune, you've had echocardiograms, and your blood sugar is fine.> > We're here for you....know that.> > Bruce Moreland 58 IPF 08/07 Dallas/Plano> > > > > > >> > My name is and I am newly diagnosed with IPF. Last year > December > > I had an open-lung biopsy and January they diagnosed me with > it. I > was > > hoping to find some1 to help me understand this better or > something. My > > doctors keep saying that I am too young and don't have many > answers > for > > me. I am so confused and scared. Some recent tests that were > done > > showed that I have already lost a significant amount of my > lung > volumes > > and my hemoglobin levels have dropped. I really don't > understand > that > > stuff too much and when I ask I get the doctors words and > can't > wrap my > > head around it all. I am really scared and thought that I was > doing > ok > > until I started getting short of breath just my showering or > brushing > > my teeth. I am just looking for answers or support because > this is > > really scaring me. I think I also maybe neded to vent > >> > >

December 13, 2007

> > >

> > > My name is and I am newly diagnosed with IPF. Last year

> > December

> > > I had an open-lung biopsy and January they diagnosed me with

> > it. I

> > was

> > > hoping to find some1 to help me understand this better or

> > something. My

> > > doctors keep saying that I am too young and don't have many

> > answers

> > for

> > > me. I am so confused and scared. Some recent tests that were

> > done

> > > showed that I have already lost a significant amount of my

> > lung

> > volumes

> > > and my hemoglobin levels have dropped. I really don't

> > understand

> > that

> > > stuff too much and when I ask I get the doctors words and

> > can't

> > wrap my

> > > head around it all. I am really scared and thought that I was

> > doing

> > ok

> > > until I started getting short of breath just my showering or

> > brushing

> > > my teeth. I am just looking for answers or support because

> > this is

> > > really scaring me. I think I also maybe neded to vent

> > >

> >

>

December 13, 2007

Sher,

Thank you for the welcome! Well I am 31 years old, wow i forgot i just

had a birthday, lol. I live in the Northern KY area. Where do u live? I

have read a lot and tried to do research but it is all so confusing and

frigthening. My doc's keep saying I am just too young to have the

disease but it weas confirmed from the Mayo clinic. The first CT scan

was of my lower lobes because i was having abdominal pain. When they

did the chest CT and x-rays it showed in both upper and lower and both

lungs. Does it make sense that they say I am not showing significant

signs but I am always sick?

I try to keep my head up and have tried to work while going through

this but it is very hard and I had to go out on short term disability

because of my recent sockness and now they have put me back on

prednisone.

I thank you for the support and am grateful for this group!!

>

> Welcome to our group. Stick around and keep reading. You will

gain so much knowledge through others posts.

> How old are you and where do you live?

> Our disease is complicated so take your questions one at a time and

be specific as to what you want to know. There is always someone here

to answer. I'm one of the older members...will be 70 next b'day. I was

diagnosed (Dx) Mar '06.

> This is the best place to be for whatever you need related to your

disease. You'll get to know some of us better than others.

> Stay around.

>

> Sher; ipf 3-06; OR.

> Don't fret about tomorrow, God is already there!

>

December 13, 2007

...there are others here on the board who are young and I'm sure they will respond as soon as they read your post. Not all people are online everyday.

I live in Oregon, about hrs. from the coast, or the mountains.

Of course this is frightening and confusing . Have you ever known anyone with this disease? Have you been online to do research? You can contact Leanne, on this board and have her mail to you informative brochures.

Sometimes this disease does not make logical sense. For me, my sats are normal (that's oxygen level in the blood) but I'm sob (short of breath). If there is "normal" O2 in the blood then I should be able to breathe ok, huh.

What type of work do you do and I'm presuming a short term disability means you will go back to work.

Why are you "back on prednisone"? There is controversy about taking Prednisone. Do some research or ask questions here. I'm not on it and choose not to take it even when my disease progresses. I've been fairly stable for about 2 years.

Do you have a pulmonologist???

Have you had tests and/or C-scans?

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

December 13, 2007

...forgot to add the 2...hours from the coast.

Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there!

December 13, 2007

Dear Tracey,

Welcome to our group but I AM so sorry you have the need to find us at all. How old are you??

We're a diverse bunch but we all have this illness in common & we do understand being scared, confused & quite simply being SHOCKED!

While none of us are medicos, people on this list LIVE with this disease & well understand the practical challenges. Talk to us & we'll respond so you don't have to feel isolated in your situation.

Regards,

from Australia

IPF: Fibrotic NSIP/ UIP

Reynauds'

May 2007

>> My name is and I am newly diagnosed with IPF. Last year December > I had an open-lung biopsy and January they diagnosed me with it. I was > hoping to find some1 to help me understand this better or something. My > doctors keep saying that I am too young and don't have many answers for > me. I am so confused and scared. Some recent tests that were done > showed that I have already lost a significant amount of my lung volumes > and my hemoglobin levels have dropped. I really don't understand that > stuff too much and when I ask I get the doctors words and can't wrap my > head around it all. I am really scared and thought that I was doing ok > until I started getting short of breath just my showering or brushing > my teeth. I am just looking for answers or support because this is > really scaring me. I think I also maybe neded to vent >

December 13, 2007

Yeah I have a pulmonologist and she is very short and breif with infomration but that will change because i need answers. I have had many xrays and CT scans along with the open lung biopsy. She (my pulmonologist) is incredibly surprised and intrigued by the clubbing I have of my fingers. I have done a lot of research and it all ends up kinda at a dead end. My pulomonologist has me back on prednisone because of me being sick and my sob or tightness in my chest,i think. I really aint sure but the prednisone stinks, it makes me hot, red-faced, and feel like I can't breathe even worse. I have told her this and thats why she has me on 20 MG instead of the 60MG she had me on before. I may try to contact Leeanne tho 2 see if she can give me more information. Thank you again. Re: Re: HelloTo: Breathe-Support > ...there are others here on the board who are young and I'm > sure they will respond as soon as they read your post. Not all > people are online everyday.> I live in Oregon, about hrs. from the coast, or the mountains.> Of course this is frightening and confusing . Have you ever > known anyone with this disease? Have you been online to do > research? You can contact Leanne, on this board and have her > mail to you informative brochures.> Sometimes this disease does not make logical sense. For me, my > sats are normal (that's oxygen level in the blood) but I'm sob > (short of breath). If there is "normal" O2 in the blood then I > should be able to breathe ok, huh.> What type of work do you do and I'm presuming a short term > disability means you will go back to work.> Why are you "back on prednisone"? There is controversy about > taking Prednisone. Do some research or ask questions here. I'm > not on it and choose not to take it even when my disease > progresses. I've been fairly stable for about 2 years.> Do you have a pulmonologist???> Have you had tests and/or C-scans?> > Sher; ipf 3-06; OR.> Don't fret about tomorrow, God is already there!

December 13, 2007

Thank you for the welcome . It does already feel a little relieving to be able to talk with people that know some of the ways I may feel. I am 31 years old, i almost forgot earlier that I had just had a birthday. You have no idea how right you are with the shock, being scared, and confusion. It is very overwhelming. Thank you so much for your support! Re: HelloTo: Breathe-Support > > Dear Tracey,> > Welcome to our group but I AM so sorry you have the> need to find us at all. How old are you??> > We're a diverse bunch but we all have this illness in> common & we do understand being scared, confused & quite simply being> SHOCKED!> > While none of us are medicos, people on this list> LIVE with this disease & well understand the > practical challenges.> Talk to us & we'll respond so you don't have to feel isolated in your> situation.> > Regards,> > from Australia> > IPF: Fibrotic NSIP/ UIP> > Reynauds'> > May 2007> > > > >> > My name is and I am newly diagnosed with IPF. Last year > December> I had an open-lung biopsy and January they diagnosed > me with it. I was> > hoping to find some1 to help me understand this better or something.> My> > doctors keep saying that I am too young and don't have many answers> for> > me. I am so confused and scared. Some recent tests that were done> > showed that I have already lost a significant amount of my lung> volumes> > and my hemoglobin levels have dropped. I really don't > understand that> > stuff too much and when I ask I get the doctors words and > can't wrap> my> > head around it all. I am really scared and thought that I was > doing ok> > until I started getting short of breath just my showering or > brushing> my teeth. I am just looking for answers or support > because this is> > really scaring me. I think I also maybe neded to vent > >> > >

December 14, 2007

,

My heart just breaks for you. Do you have family support? Do they really get it?

Always feel free to seek a consult with another pulmonary doctor.

The overwhelming shock, being scared and confused are feelings that we have all felt. For years I felt so alone. Then, came this group. It is so comforting to know that others care because they "get it". No explanations necessary.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > My name is and I am newly diagnosed with IPF. Last year > > December> I had an open-lung biopsy and January they diagnosed > > me with it. I was> > > hoping to find some1 to help me understand this better or something.> > My> > > doctors keep saying that I am too young and don't have many answers> > for> > > me. I am so confused and scared. Some recent tests that were done> > > showed that I have already lost a significant amount of my lung> > volumes> > > and my hemoglobin levels have dropped. I really don't > > understand that> > > stuff too much and when I ask I get the doctors words and > > can't wrap> > my> > > head around it all. I am really scared and thought that I was > > doing ok> > > until I started getting short of breath just my showering or > > brushing> my teeth. I am just looking for answers or support > > because this is> > > really scaring me. I think I also maybe neded to vent > > >> > > > > >>

December 14, 2007

,

My heart just breaks for you. Do you have family support? Do they really get it?

Always feel free to seek a consult with another pulmonary doctor.

The overwhelming shock, being scared and confused are feelings that we have all felt. For years I felt so alone. Then, came this group. It is so comforting to know that others care because they "get it". No explanations necessary.

Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > My name is and I am newly diagnosed with IPF. Last year > > December> I had an open-lung biopsy and January they diagnosed > > me with it. I was> > > hoping to find some1 to help me understand this better or something.> > My> > > doctors keep saying that I am too young and don't have many answers> > for> > > me. I am so confused and scared. Some recent tests that were done> > > showed that I have already lost a significant amount of my lung> > volumes> > > and my hemoglobin levels have dropped. I really don't > > understand that> > > stuff too much and when I ask I get the doctors words and > > can't wrap> > my> > > head around it all. I am really scared and thought that I was > > doing ok> > > until I started getting short of breath just my showering or > > brushing> my teeth. I am just looking for answers or support > > because this is> > > really scaring me. I think I also maybe neded to vent > > >> > > > > >>

December 14, 2007

Just don't overwork yourself, but thats a very gracious offer. If all

you do is show them the value and get them to someone, you'll be

helping so. Just like pulmonologists, there are good and bad, but

knowing my counselor is committed to being by my side through this

whole thing is an incredible feeling of support. She's also the one who

will chastise me if I stop being active and make me get back on track

enjoying life. I know we have lots of laughs and tears left together.

She's not just a very good professional counselor but a loving human

being. But, I'd say to everyone, when so much of what we face is living

with our disease, a counselor may be more important than your

pulmonologist. That and this group are what I know will help me

through. I personally think prednisone should automatically include an

appointment with a counselor and often some other meds to counter the

effects to mood.

>

> Bruce...this may be a good time to offer my help to anyone who may

want to chat privately. I am a retired counselor and would feel blessed

indeed if I can be of any help. My private email is bofus@...

> Sher; ipf 3-06; OR.

> Don't fret about tomorrow, God is already there!

>

December 14, 2007