newly diagnosed

January 13, 2009

Eileen, your note makes me less afraid of it but why do they go into your right lung all the time? When I had my bronchoscopy they also went into my right lung. Is there any significance in that?

After your note I would do it but have no one to care for my animals while I am in the hospital. My friends are all against the proceedure and they will not do anything that would make it easier for me to have it done. I don't think that they can do anything either when they identify the agent causing it. The only thing is it would idenfify why I have PF. I'm not so sure I want to undergo surgery just for identification when there is no help available. My Pulmo put me on some Advair because he said it helped me in the Pulonary Tests but I turned out to be allergic to it. So that was out. I can't take steroids and he already knows I don't have inflammation.

Yes, I am finding this support group to be quite helful and delightful. I am feeling realy good today and if I could sing I would sing and dance with my dog! Joyce R IPF 08 Prescott Az

Re: newly diagnosed

Hi JoyceI was also diagnosed w IPF in May 07 and had a VATS open lung biopsy.I know different people experience things differently but do not beafraid. I had no problem with it at all. They made two smallincisions on my right side down a little from my armpit. Then theyinsert the camera in one incision and the thing that will cut a pieceoff for them to biopsy. When I woke up I felt fine, sore but thenthey gave me pain meds and I was fine. Coughing at first hurt alittle because you are coughing up "gook". I was in intensive carefor 2 days but by the 2nd day I was up and walking around on my own. They were going to transfer me to the "step down" unit (where you donot not intensive watching) but I was doing so well they dischargedme. Again, I felt a little soreness but with the percocet they gaveme I was fine. After about a week I went back to work. IT really wasnot a bad thing for me at all and it really is helpful to them infiguring out which of the many interstitial lung diseases you have andwhat they can or cannot do. Any questions let us know. I only recently found this support group and how I wish I found them 2years ago. It has been a scary thing to go thru but I feel so muchbetter with these wonderful people. Some support groups are very downand miserable. These people are all so up and happy and full ofinformation that no one who is not going thru it would know. They areall amazing resources for any questions you have.Eileen, 57 IPF/UIP May 07>> Hi all! My name is Joyce and I am newly diagnosed with PulmonaryFibrosis. My pulmonologist has not said I am terminal nor has myprimary physician. I did ask my PP and she admitted that she had apatient who died of it in 7 years. I don't know what to make of this.She also said that Yes it ends in death. I am on oxygen. I amconfused. Should I be concerned? I don't feel like I am going to die.Thank you, Joyce>

January 13, 2009

Bruce- I might be able to go to UCLA but for my dogs and birds. But, why would I go and how do you get seen by these specialists? Why do I need to see a specialist? Well, besides my doctors here. This confuses me. Accept for the fact that is is hard for me to breathe and I am on Oxygen I don't really feel sick. Confused. Joyce R Prescott AZ PF O8

newly diagnosed>>> Hi all! My name is Joyce and I am newly diagnosed with PulmonaryFibrosis. My pulmonologist has not said I am terminal nor has my primaryphysician. I did ask my PP and she admitted that she had a patient whodied of it in 7 years. I don't know what to make of this. She also saidthat Yes it ends in death. I am on oxygen. I am confused. Should I beconcerned? I don't feel like I am going to die. Thank you, Joyce>

January 13, 2009

Joyce

You have a disease....you could have diabetes and not feel sick for a

while. You can have many things. This disease is confusing that way. I

don't look sick. I enjoy life. I have oxygen will travel. But I believe

knowledge is power and what you can find out today may enhance your life

in the future. What if they found the underlying cause was an autoimmune

disease and could try to put you on something for it? What if they help

you avoid PH? What if they are able to better educated you as to the

form of PF and how to take care of yourself and things like that? The

way you get seen depends on your insurance and whether a referral is

necessary. However, the way many of us get seen is just call the ILD

center at the teaching hospital and there's a coordinating nurse

typically. She'll take your information, set you up, tell you what to do

and what to send. Most of them are great. I love Cathy in Chicago and

the one at Emory is just a doll-I've talked to her, Jane and Joanie and

Joe know her well. I spoke once to the one at Tulane and she was

knowledgeable and so nice. These are doctors and nurses who truly do

understand the disease. They see it and live around it. With the typical

pulmonologist knowledge is very limited as he rarely if ever sees it.

They have seen hundreds of cases. They also share with the other 12

centers and have periodic meetings together.

Right now, at best, you have a partial diagnosis. Now, I can't tell you

how much more you could learn at UCLA because it's different with

everyone. I can tell you that 95% of the people I've known to go to the

centers have been glad they did. We have several now going to Tulane. We

have quite a few who have been to UAB. You'll be amazed how

comprehensive it is. I was shocked that my doctor had been through my

voluminous records before I got there and made notes and had her

questions lined up. They took 22 tubes of blood but I had things tested

that others had not. They even have their own protocols for CT's which

are aimed at learning about PF, not just general generic chest CT's.

It will also build you a baseline of information on which everything in

the future can be built and comparisons made. That can be very

important. I have things that would lead a new doctor to a bit of a

panic (non PF things) but because I have such a good history they can

see how it hasn't changed recently and very little in years. So, instead

of panic, its continue to follow and not be too concerned.

On the other hand when I went to Chicago they found some things that

really had been sort of overlooked. They put some things together. Now,

it hasn't yet been of meaning. But it gives something to look for. One

person here had a very similar finding when she went to Duke and now it

has manifested itself more and lead them to some additional conclusions.

Mistakes in how you proceed can easily be made without knowledge. All PF

isn't the same. All prognosis isn't the same. All treatment isn't the

same. I have knowledge of my condition and it's helping me to enjoy a

great life in spite of it.

> >

> > Joyce,

> > The first thing I'd like to say is I am so sorry that you are

going

> through this. It's a nightmare and all of us understand how you

feel.

> The confusion,anger, frustration, fear, it's all very familiar to

any of

> us who have this illness.

> > I'm going to jump in here though you will get other replies as

more

> folks see your post. The very first thing I would suggest is that

you

> purchase an oximeter if you don't already have one. Here's a link to

an

> FDA approved model that is only $65.

> >

http://www.portablenebs.com/choiceoximeter.htmhttp://www.portablenebs.c\

om/choiceoximeter.htm>

> > Once you have it, use it. Monitor your oxygen levels during

different

> activities. Don't let your O2 fall below 90. Below 90 for more than

a

> few minutes is dangerous for many reasons. When cells are deprived

of

> oxygen, they die. Brain cells, heart cells, kidney cells, liver

cells

> etc. Low O2 will shorten your life. When you talk about doing

becoming

> dizzy in aerobics that concerns me. You need to make sure your

oxygen

> level stays up while you are exercising. Exercise is good but safety

is

> paramount. You can go a long way to insuring that safety with an

> oximeter. It will give you the information you need to keep your

oxygen

> at a safe level.

> >

> > The biopsy is a very difficult question. You've had one with a

> bronchoscope. That was a biopsy. The trouble is that takes lung

tissue

> from the top of your lung. This type of lung disease almost always

> starts in the lower lobes of our lungs and that can't be accessed by

a

> bronchoscope. That's why the doctors what you to have a surgical

lung

> biopsy. I had one and if I had it to do over again, I would. Others

> feel very differently. It is invasive surgery and can be risky. Mine

> provided me with information that changed the way I was treated.

That's

> why I see value in having it. We have members who have had it and

got no

> information that was useful and consequently regret having gone

through

> it. We have one member who had a VATS (the type of biopsy you are

> talking about) recently. He expected to be in the hospital two days

and

> ended up being in the hospital over a week and had some

complications.

> > All that said, you can get an awful lot of information from

pulmonary

> function tests, ct scans, echocardiograms etc. It sounds like they

are

> keeping an eye on you pretty well in that regard. Please know that

your

> pulmonologist is being paid by you to perform a service. Part of

that

> service is to give you information.This is not magic!! Don't be

> intimidated. Show up at your next appointment with a list of

questions

> and don't leave till they are answered. Take someone with you (a

family

> member or friend) who can help keep you on track and provide moral

> support.

> >

> > The most important thing you can do is take care of yourself. Eat

> well, get some safe exercise, keep your O2 levels up, get plenty of

> rest. You are not alone in this. In July of 2006 I stumbled on to

this

> group and it changed my life. You will find some of the best people

on

> the planet in this group. You are not alone, you are not alone, you

are

> not alone. There is no expiration date tatooed on your bottom. You

are

> not going to die next week. Life goes on, it's different but it's

still

> very sweet.

> >

> > Beth in North Carolina

> > Moderator

> > Fibrotic NSIP 06/06 Dermatomyositis 11/08

> >

> > ________________________________

> > From: JOYCE RUDY greycharlie@

> > To:

Breathe-Support

> > Sent: Monday, January 12, 2009 10:24:23 AM

> > Subject: Re: newly diagnosed

> >

> > Hi Beth, I have asked questions of my pulmonologist but he

says

> he can't answer my questions as to what has caused the scaring or

what

> type I have unless he does a biopsy in which they open up my lungs

and

> look inside with a camera and take larger hunks of my lung. I

recently

> had a bronschopocy and it showed pulmonary fibrosis but no

inflamation

> and no TB. He said it would be lucky if he found anything. I am

afraid

> of the biopsy he wants because it is so intrusive. I would have to

be

> hospitalized for at least 2 days and I have 7 birds and 5 dogs and

one

> of my dogs is diabetic. I cannot be away from home for 2 or more

days!

> Besides, it is scary to think that they cut open your lung! He says

he

> can't do any prognosis without it.

> >

> > I am on oxygen 24/7 since they gave me all sorts of pulmonary

tests

> and it has increased my quality of life tremendously. He didn't

really

> discuss the results of the tests with me. It all seems so magical. I

> didn't know that they tested for all those things in the pumlonary

tests

> until I read your handbook. He said nothing. In fact when I go in to

see

> him he doesn't say anything. I see him for him to listen to my lungs

and

> ask me afew questions. I see him maybe every 3 months. I am really

> afraid of having the biopsy done. My friends say I should avoid that

at

> all costs. That it is too dangerous and if I get worse I will just

get

> worse and if not then not. I cannot take steroids and have no

> inflamation in any case.

> >

> > It is so hard for me to grasp that I may die. I take aerobics

twice a

> week and Aquafit (water aerobics) twice a week. My friends ask me

how I

> can take these things and have a problem. My doctors encourage me to

> continue. I am active and the oxygen has made it so I can garden and

> stuff. It is difficult in all my aerobics classes. I often have to

stop

> and wait for the dizziness to pass but when it does I keep going. I

am

> confused as to how you are supposed to conserve energy and at the

same

> time exercise. For instance...Costco is a huge store. Do I ride in

the

> cart to conserve my energy or do I walk thru the store? So far I

have

> chosen to walk thru the store...but, is that right? I am just

confused.

> >

> > Anyway, my doctor won't answer any questions because he says he

> doesn't know anything if I don't take the biopsy. He said the pieces

of

> lung that he gets from the bronschopocy isn't enough to make a

> diagnoses. So I wonder why he did it?

> >

> > I live in the Mountains of AZ . Prescott AZ and am quite a

distance

> from any university with a medical school. The closest would be in

> Tuscon and that is a whole days drive for me and I couldn't leave my

> animals over night. Part of my problem is money. I have so little of

it

> and part is that my friends aren't able to help me with taking care

of

> my dogs and birds if I need to be away over night or in the

hosptital. I

> think they don't want me to have the biopsy and are making it as

> difficult as possible for me to have it. And, some simply cannot

> help..too far away.

> >

> > I was diagnoesed first by a Xray and then by a CAT scan and

finally by

> a bronschospocy. Is it really necessary to have the biosey? I mean

what

> can they do to help me even if they find out what is causing it if I

> cannot take steroids? It is hard to make a decision when you have so

> little information to make the decision. Joyce

> > newly diagnosed

> >

> > Hi all! My name is Joyce and I am newly diagnosed with Pulmonary

> Fibrosis. My pulmonologist has not said I am terminal nor has my

primary

> physician. I did ask my PP and she admitted that she had a patient

who

> died of it in 7 years. I don't know what to make of this. She also

said

> that Yes it ends in death. I am on oxygen. I am confused. Should I

be

> concerned? I don't feel like I am going to die. Thank you, Joyce

> >

>

January 13, 2009

Joyce,

I am the person that Bruce is referring to about being evaluated at Duke and they are doing more tests and reaching additional conclusions.

I would just like to add my 2 cents about the value of seeing a specialist. When I lived in NY I had a pulmonologist locally who oversaw my care in between visits to the specialist I saw in NY city. He was wonderful, kind, caring and available to me if I so much as sneezed. But he also knew what his limitations were. He once told me that besides me he had two other patients with pulmonary fibrosis and both were in nursing homes. He had zero experience in dealing with this illness in a fairly young (I was diagnosed at age 46) otherwise healthy person. He knew how much he didn't know and had no hesitation to make sure I was being seen regularly by someone who saw this illness all the time.

I see a doctor now at Duke whose main clinical interest is lung disease associated with auto immune disease. I feel I am in the best possible hands and am receiving the best possible care. I'm not putting your doctors down at all, I just want to say that there is value in seeing someone who is intimately familiar with these diseases. It can help insure that you are around to be with your animals for as long as you want to be.

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Tuesday, January 13, 2009 7:42:07 PMSubject: Re: newly diagnosed

JoyceYou have a disease....you could have diabetes and not feel sick for awhile. You can have many things. This disease is confusing that way. Idon't look sick. I enjoy life. I have oxygen will travel. But I believeknowledge is power and what you can find out today may enhance your lifein the future. What if they found the underlying cause was an autoimmunedisease and could try to put you on something for it? What if they helpyou avoid PH? What if they are able to better educated you as to theform of PF and how to take care of yourself and things like that? Theway you get seen depends on your insurance and whether a referral isnecessary. However, the way many of us get seen is just call the ILDcenter at the teaching hospital and there's a coordinating nursetypically. She'll take your information, set you up, tell you what to doand what to send. Most of them are great. I love Cathy in Chicago

andthe one at Emory is just a doll-I've talked to her, Jane and Joanie andJoe know her well. I spoke once to the one at Tulane and she wasknowledgeable and so nice. These are doctors and nurses who truly dounderstand the disease. They see it and live around it. With the typicalpulmonologist knowledge is very limited as he rarely if ever sees it.They have seen hundreds of cases. They also share with the other 12centers and have periodic meetings together.Right now, at best, you have a partial diagnosis. Now, I can't tell youhow much more you could learn at UCLA because it's different witheveryone. I can tell you that 95% of the people I've known to go to thecenters have been glad they did. We have several now going to Tulane. Wehave quite a few who have been to UAB. You'll be amazed howcomprehensive it is. I was shocked that my doctor had been through myvoluminous records before I got there and

made notes and had herquestions lined up. They took 22 tubes of blood but I had things testedthat others had not. They even have their own protocols for CT's whichare aimed at learning about PF, not just general generic chest CT's.It will also build you a baseline of information on which everything inthe future can be built and comparisons made. That can be veryimportant. I have things that would lead a new doctor to a bit of apanic (non PF things) but because I have such a good history they cansee how it hasn't changed recently and very little in years. So, insteadof panic, its continue to follow and not be too concerned.On the other hand when I went to Chicago they found some things thatreally had been sort of overlooked. They put some things together. Now,it hasn't yet been of meaning. But it gives something to look for. Oneperson here had a very similar finding when she went to Duke and now

ithas manifested itself more and lead them to some additional conclusions.Mistakes in how you proceed can easily be made without knowledge. All PFisn't the same. All prognosis isn't the same. All treatment isn't thesame. I have knowledge of my condition and it's helping me to enjoy agreat life in spite of it.> >> > Joyce,> > The first thing I'd like to say is I am so sorry that you aregoing> through this. It's a nightmare and all of us understand how youfeel.> The confusion,anger, frustration,

fear, it's all very familiar toany of> us who have this illness.> > I'm going to jump in here though you will get other replies asmore> folks see your post. The very first thing I would suggest is thatyou> purchase an oximeter if you don't already have one. Here's a link toan> FDA approved model that is only $65.> >http://www.portable nebs.com/ choiceoximeter. htm<http://www.portable nebs.c\om/choiceoximeter. htm>> > Once you have it, use it. Monitor your oxygen levels duringdifferent> activities. Don't let your O2 fall below 90. Below 90 for more thana> few minutes is dangerous for many reasons. When cells are deprivedof> oxygen, they die. Brain cells, heart

cells, kidney cells, livercells> etc. Low O2 will shorten your life. When you talk about doingbecoming> dizzy in aerobics that concerns me. You need to make sure youroxygen> level stays up while you are exercising. Exercise is good but safetyis> paramount. You can go a long way to insuring that safety with an> oximeter. It will give you the information you need to keep youroxygen> at a safe level.> >> > The biopsy is a very difficult question. You've had one with a> bronchoscope. That was a biopsy. The trouble is that takes lungtissue> from the top of your lung. This type of lung disease almost always> starts in the lower lobes of our lungs and that can't be accessed bya> bronchoscope. That's why the doctors what you to have a surgicallung> biopsy. I had one and if I had it to do over again, I would. Others> feel very

differently. It is invasive surgery and can be risky. Mine> provided me with information that changed the way I was treated.That's> why I see value in having it. We have members who have had it andgot no> information that was useful and consequently regret having gonethrough> it. We have one member who had a VATS (the type of biopsy you are> talking about) recently. He expected to be in the hospital two daysand> ended up being in the hospital over a week and had somecomplications.> > All that said, you can get an awful lot of information frompulmonary> function tests, ct scans, echocardiograms etc. It sounds like theyare> keeping an eye on you pretty well in that regard. Please know thatyour> pulmonologist is being paid by you to perform a service. Part ofthat> service is to give you information. This is not magic!! Don't be>

intimidated. Show up at your next appointment with a list ofquestions> and don't leave till they are answered. Take someone with you (afamily> member or friend) who can help keep you on track and provide moral> support.> >> > The most important thing you can do is take care of yourself. Eat> well, get some safe exercise, keep your O2 levels up, get plenty of> rest. You are not alone in this. In July of 2006 I stumbled on tothis> group and it changed my life. You will find some of the best peopleon> the planet in this group. You are not alone, you are not alone, youare> not alone. There is no expiration date tatooed on your bottom. Youare> not going to die next week. Life goes on, it's different but it'sstill> very sweet.> >> > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06

Dermatomyositis 11/08> >> >> >> >> > ____________ _________ _________ __> > From: JOYCE RUDY greycharlie@> > To:Breathe-Support@ yahoogroups. com<mailto:Breathe- Support%40yahoog roups.com\>> > Sent: Monday, January 12, 2009 10:24:23 AM> > Subject: Re: newly diagnosed> >> >> > Hi Beth, I have asked questions of my pulmonologist but hesays> he can't answer my questions as to what has caused the scaring orwhat> type I have unless he does a biopsy in which they open up my lungsand> look inside with a camera and take larger hunks of my lung. Irecently> had a bronschopocy and it showed pulmonary fibrosis but

noinflamation> and no TB. He said it would be lucky if he found anything. I amafraid> of the biopsy he wants because it is so intrusive. I would have tobe> hospitalized for at least 2 days and I have 7 birds and 5 dogs andone> of my dogs is diabetic. I cannot be away from home for 2 or moredays!> Besides, it is scary to think that they cut open your lung! He sayshe> can't do any prognosis without it.> >> > I am on oxygen 24/7 since they gave me all sorts of pulmonarytests> and it has increased my quality of life tremendously. He didn'treally> discuss the results of the tests with me. It all seems so magical. I> didn't know that they tested for all those things in the pumlonarytests> until I read your handbook. He said nothing. In fact when I go in tosee> him he doesn't say anything. I see him for him to listen to my

lungsand> ask me afew questions. I see him maybe every 3 months. I am really> afraid of having the biopsy done. My friends say I should avoid thatat> all costs. That it is too dangerous and if I get worse I will justget> worse and if not then not. I cannot take steroids and have no> inflamation in any case.> >> > It is so hard for me to grasp that I may die. I take aerobicstwice a> week and Aquafit (water aerobics) twice a week. My friends ask mehow I> can take these things and have a problem. My doctors encourage me to> continue. I am active and the oxygen has made it so I can garden and> stuff. It is difficult in all my aerobics classes. I often have tostop> and wait for the dizziness to pass but when it does I keep going. Iam> confused as to how you are supposed to conserve energy and at thesame> time exercise. For

instance...Costco is a huge store. Do I ride inthe> cart to conserve my energy or do I walk thru the store? So far Ihave> chosen to walk thru the store...but, is that right? I am justconfused.> >> > Anyway, my doctor won't answer any questions because he says he> doesn't know anything if I don't take the biopsy. He said the piecesof> lung that he gets from the bronschopocy isn't enough to make a> diagnoses. So I wonder why he did it?> >> > I live in the Mountains of AZ . Prescott AZ and am quite adistance> from any university with a medical school. The closest would be in> Tuscon and that is a whole days drive for me and I couldn't leave my> animals over night. Part of my problem is money. I have so little ofit> and part is that my friends aren't able to help me with taking careof> my dogs and birds if I need to be

away over night or in thehosptital. I> think they don't want me to have the biopsy and are making it as> difficult as possible for me to have it. And, some simply cannot> help..too far away.> >> > I was diagnoesed first by a Xray and then by a CAT scan andfinally by> a bronschospocy. Is it really necessary to have the biosey? I meanwhat> can they do to help me even if they find out what is causing it if I> cannot take steroids? It is hard to make a decision when you have so> little information to make the decision. Joyce> > newly diagnosed> >> >> > Hi all! My name is Joyce and I am newly diagnosed with Pulmonary> Fibrosis. My pulmonologist has not said I am terminal nor has myprimary> physician. I did ask my PP and she admitted that she had a patientwho> died of it in 7 years. I don't know what to make of this. She alsosaid> that Yes it ends in death. I am on oxygen. I am confused. Should Ibe> concerned? I don't feel like I am going to die. Thank you, Joyce> >>

January 13, 2009