newly diagnosed

[Guest guest]

Hi ,

I'm so glad that you are willing to learn about this disease, and help your mom understand the process. We're willing to answer questions, give suggestions and listen to vents-- both from the family and from your mom.

Neurosarcoidosis is a disease that is diagnosed after all the other things have been ruled out--like MS, Parkinsons, Lupus, and so many other autoimmune diseases.

So far, no one has figured out what causes NS, and there is no cure. It can be put into remission, and it may stay in remission. Honestly, once sarcoidosis has advanced to NS-- or multi-system sarcoidosis, it's not likely to go into remission, but if we can stop the advancement of the disease, that is what we shoot for as patients.

I explain my NS as being similar to having MS, dementia, Rheumatoid Arthritis, and peripheral neuropathy all wrapped in one. Your mom may have some short term memory loss, so if you find her telling you the same story over and over, be patient. If you explain something to her, and either she doesn't understand it, or doesn't remember you talking about it-- it can be that her NS is effecting the frontal lobe of the brain--where problem solving, concentration, short term memory, and personality all come from.

The problem is that she may not even have anything show on an MRI or CT of her brain, but may have vasculitis that is putting pressure on those parts of the brain--and as the area blood vessels become inflamed, then it has the same effect as would a stroke or TIA to those areas.

She may find that she has a decreased sense of balance, or loss of hearing, or smell or taste. She may also have a "Bells Palsy" where the left side of her face may sag. This is part of the disease. Some of us get it, some don't.

Many of us have peripheral neuropathy-- numbness of our extremities. It can be a simple tingling effect, much like a hand or foot going to sleep, or it can be very painful-- that feeling that you get when your hands have been asleep for hours, and are trying to wake up-- but it's so very intense--like your extremities are on fire.

She may find that all her joints and ligaments hurt--all the time. She may even explain that the "inside" of her bones hurt. We get granulomas that look very similar to the bone spurs that you see with severe osteo-arthritis. It looks like nails coming from the bones and puts pressure on the joints-- causing pain. This can also be in her spine.

Sarcoidosis can also be in the blood itself, it likes our red blood cells, and makes the blood vessels swell (vasculitis). There is no safe place that sarcoidosis can't go. Liver, eyes, bones, muscles, ligaments, joints, lungs, heart, brain, can all be effected.

The damage comes from the sarcoidosis inflammation and granulomas. The granulomas leave scarring in the organs that become involved, and so our organs no longer function properly. For instance, my lungs have become seriously fibrosed (hardened) and instead of looking like a new kitchen sponge-- they look like the sponge that needs to be tossed out. When it effects the liver, our liver enzymes go out of whack (medical terminology at it's finest) and so we find we retain alot of fluids. The calcium buildup for those whose bodies decide to store too much calcium can lead to kidney stones, and eventually, kidney failure.

Now-- I know this is alot to handle. But with the right medications, the progression can be slowed down, or stopped.

There are several drugs that they like to use. Prednisone is the #1 choice. However, with multi-system sarcoidosis, it isn't always the best choice. There are some serious clinical trials that have recently been done with Biological Response Modifers--BRM's that are showing some promise. I just went thru one for Remicade, and had some positive results in my lung function, as well as getting the bone and spine pain under much better control.

Methotrexate, Imuran, Arava, Plaquenil are all good choices. It usually takes several medications to get this under control. Remicade has to be used in conjunction with Methotrexate. Otherwise, you build a resistance to the Remicade (antibodies.) MTX and Plaquenil are good combinations. Imuran and MTX are good together.

At the bottom of this page, and all our emails is a LINK to our LINKS. This area of the group site, has some wonderful articles on sarcoidosis and the medications. Just scan down and you'll see other choices within the site. Also, our ARCHIVES have some fantastic info from some wonderful people that have spent thousands of hours learning about this disease, and sharing that knowledge.

We're a family here, all wanting to get better, and we are the pioneers of what is available in treatments. We are our own best teachers--and you'll find that you will need to be a voice for your mom and her treatment. Teach her about her disease. It is so very important.

Another thing-- this disease makes you extremely exhausted. Some days, just getting out of bed is as good as you can do. Pacing yourself to get thru the day is most important. When mom says she's beat, she's beat. Give her time to rest, regroup, and she'll overdo again-- and again-- until she learns that she will have to slow down, and truly pace her days.

Like I said, we're here for both of you. Ask the questions-- let us know what meds your mom is on, and where you live-- we have some 300+ members on this list. For the most part, we all have this disease, so if you send an email and don't get a response right away-- we'll get there, there are 2 co-owners, and 3 additional moderators--as well as a host of others that have been on this path also. So if it's not right away, one of us will get to you fairly soon--we can't all crash at the same time.

Blessing to you and to your mom,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi ,

I'm so glad that you are willing to learn about this disease, and help your mom understand the process. We're willing to answer questions, give suggestions and listen to vents-- both from the family and from your mom.

Neurosarcoidosis is a disease that is diagnosed after all the other things have been ruled out--like MS, Parkinsons, Lupus, and so many other autoimmune diseases.

So far, no one has figured out what causes NS, and there is no cure. It can be put into remission, and it may stay in remission. Honestly, once sarcoidosis has advanced to NS-- or multi-system sarcoidosis, it's not likely to go into remission, but if we can stop the advancement of the disease, that is what we shoot for as patients.

I explain my NS as being similar to having MS, dementia, Rheumatoid Arthritis, and peripheral neuropathy all wrapped in one. Your mom may have some short term memory loss, so if you find her telling you the same story over and over, be patient. If you explain something to her, and either she doesn't understand it, or doesn't remember you talking about it-- it can be that her NS is effecting the frontal lobe of the brain--where problem solving, concentration, short term memory, and personality all come from.

The problem is that she may not even have anything show on an MRI or CT of her brain, but may have vasculitis that is putting pressure on those parts of the brain--and as the area blood vessels become inflamed, then it has the same effect as would a stroke or TIA to those areas.

She may find that she has a decreased sense of balance, or loss of hearing, or smell or taste. She may also have a "Bells Palsy" where the left side of her face may sag. This is part of the disease. Some of us get it, some don't.

Many of us have peripheral neuropathy-- numbness of our extremities. It can be a simple tingling effect, much like a hand or foot going to sleep, or it can be very painful-- that feeling that you get when your hands have been asleep for hours, and are trying to wake up-- but it's so very intense--like your extremities are on fire.

She may find that all her joints and ligaments hurt--all the time. She may even explain that the "inside" of her bones hurt. We get granulomas that look very similar to the bone spurs that you see with severe osteo-arthritis. It looks like nails coming from the bones and puts pressure on the joints-- causing pain. This can also be in her spine.

Sarcoidosis can also be in the blood itself, it likes our red blood cells, and makes the blood vessels swell (vasculitis). There is no safe place that sarcoidosis can't go. Liver, eyes, bones, muscles, ligaments, joints, lungs, heart, brain, can all be effected.

The damage comes from the sarcoidosis inflammation and granulomas. The granulomas leave scarring in the organs that become involved, and so our organs no longer function properly. For instance, my lungs have become seriously fibrosed (hardened) and instead of looking like a new kitchen sponge-- they look like the sponge that needs to be tossed out. When it effects the liver, our liver enzymes go out of whack (medical terminology at it's finest) and so we find we retain alot of fluids. The calcium buildup for those whose bodies decide to store too much calcium can lead to kidney stones, and eventually, kidney failure.

Now-- I know this is alot to handle. But with the right medications, the progression can be slowed down, or stopped.

There are several drugs that they like to use. Prednisone is the #1 choice. However, with multi-system sarcoidosis, it isn't always the best choice. There are some serious clinical trials that have recently been done with Biological Response Modifers--BRM's that are showing some promise. I just went thru one for Remicade, and had some positive results in my lung function, as well as getting the bone and spine pain under much better control.

Methotrexate, Imuran, Arava, Plaquenil are all good choices. It usually takes several medications to get this under control. Remicade has to be used in conjunction with Methotrexate. Otherwise, you build a resistance to the Remicade (antibodies.) MTX and Plaquenil are good combinations. Imuran and MTX are good together.

At the bottom of this page, and all our emails is a LINK to our LINKS. This area of the group site, has some wonderful articles on sarcoidosis and the medications. Just scan down and you'll see other choices within the site. Also, our ARCHIVES have some fantastic info from some wonderful people that have spent thousands of hours learning about this disease, and sharing that knowledge.

We're a family here, all wanting to get better, and we are the pioneers of what is available in treatments. We are our own best teachers--and you'll find that you will need to be a voice for your mom and her treatment. Teach her about her disease. It is so very important.

Another thing-- this disease makes you extremely exhausted. Some days, just getting out of bed is as good as you can do. Pacing yourself to get thru the day is most important. When mom says she's beat, she's beat. Give her time to rest, regroup, and she'll overdo again-- and again-- until she learns that she will have to slow down, and truly pace her days.

Like I said, we're here for both of you. Ask the questions-- let us know what meds your mom is on, and where you live-- we have some 300+ members on this list. For the most part, we all have this disease, so if you send an email and don't get a response right away-- we'll get there, there are 2 co-owners, and 3 additional moderators--as well as a host of others that have been on this path also. So if it's not right away, one of us will get to you fairly soon--we can't all crash at the same time.

Blessing to you and to your mom,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi ,

I'm so glad that you are willing to learn about this disease, and help your mom understand the process. We're willing to answer questions, give suggestions and listen to vents-- both from the family and from your mom.

Neurosarcoidosis is a disease that is diagnosed after all the other things have been ruled out--like MS, Parkinsons, Lupus, and so many other autoimmune diseases.

So far, no one has figured out what causes NS, and there is no cure. It can be put into remission, and it may stay in remission. Honestly, once sarcoidosis has advanced to NS-- or multi-system sarcoidosis, it's not likely to go into remission, but if we can stop the advancement of the disease, that is what we shoot for as patients.

I explain my NS as being similar to having MS, dementia, Rheumatoid Arthritis, and peripheral neuropathy all wrapped in one. Your mom may have some short term memory loss, so if you find her telling you the same story over and over, be patient. If you explain something to her, and either she doesn't understand it, or doesn't remember you talking about it-- it can be that her NS is effecting the frontal lobe of the brain--where problem solving, concentration, short term memory, and personality all come from.

The problem is that she may not even have anything show on an MRI or CT of her brain, but may have vasculitis that is putting pressure on those parts of the brain--and as the area blood vessels become inflamed, then it has the same effect as would a stroke or TIA to those areas.

She may find that she has a decreased sense of balance, or loss of hearing, or smell or taste. She may also have a "Bells Palsy" where the left side of her face may sag. This is part of the disease. Some of us get it, some don't.

Many of us have peripheral neuropathy-- numbness of our extremities. It can be a simple tingling effect, much like a hand or foot going to sleep, or it can be very painful-- that feeling that you get when your hands have been asleep for hours, and are trying to wake up-- but it's so very intense--like your extremities are on fire.

She may find that all her joints and ligaments hurt--all the time. She may even explain that the "inside" of her bones hurt. We get granulomas that look very similar to the bone spurs that you see with severe osteo-arthritis. It looks like nails coming from the bones and puts pressure on the joints-- causing pain. This can also be in her spine.

Sarcoidosis can also be in the blood itself, it likes our red blood cells, and makes the blood vessels swell (vasculitis). There is no safe place that sarcoidosis can't go. Liver, eyes, bones, muscles, ligaments, joints, lungs, heart, brain, can all be effected.

The damage comes from the sarcoidosis inflammation and granulomas. The granulomas leave scarring in the organs that become involved, and so our organs no longer function properly. For instance, my lungs have become seriously fibrosed (hardened) and instead of looking like a new kitchen sponge-- they look like the sponge that needs to be tossed out. When it effects the liver, our liver enzymes go out of whack (medical terminology at it's finest) and so we find we retain alot of fluids. The calcium buildup for those whose bodies decide to store too much calcium can lead to kidney stones, and eventually, kidney failure.

Now-- I know this is alot to handle. But with the right medications, the progression can be slowed down, or stopped.

There are several drugs that they like to use. Prednisone is the #1 choice. However, with multi-system sarcoidosis, it isn't always the best choice. There are some serious clinical trials that have recently been done with Biological Response Modifers--BRM's that are showing some promise. I just went thru one for Remicade, and had some positive results in my lung function, as well as getting the bone and spine pain under much better control.

Methotrexate, Imuran, Arava, Plaquenil are all good choices. It usually takes several medications to get this under control. Remicade has to be used in conjunction with Methotrexate. Otherwise, you build a resistance to the Remicade (antibodies.) MTX and Plaquenil are good combinations. Imuran and MTX are good together.

At the bottom of this page, and all our emails is a LINK to our LINKS. This area of the group site, has some wonderful articles on sarcoidosis and the medications. Just scan down and you'll see other choices within the site. Also, our ARCHIVES have some fantastic info from some wonderful people that have spent thousands of hours learning about this disease, and sharing that knowledge.

We're a family here, all wanting to get better, and we are the pioneers of what is available in treatments. We are our own best teachers--and you'll find that you will need to be a voice for your mom and her treatment. Teach her about her disease. It is so very important.

Another thing-- this disease makes you extremely exhausted. Some days, just getting out of bed is as good as you can do. Pacing yourself to get thru the day is most important. When mom says she's beat, she's beat. Give her time to rest, regroup, and she'll overdo again-- and again-- until she learns that she will have to slow down, and truly pace her days.

Like I said, we're here for both of you. Ask the questions-- let us know what meds your mom is on, and where you live-- we have some 300+ members on this list. For the most part, we all have this disease, so if you send an email and don't get a response right away-- we'll get there, there are 2 co-owners, and 3 additional moderators--as well as a host of others that have been on this path also. So if it's not right away, one of us will get to you fairly soon--we can't all crash at the same time.

Blessing to you and to your mom,

Tracie

NS Co-owner/moderator

[Guest guest]

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

[Guest guest]

Joyce,

Welcome to Breathe Support! I'm sorry you had reason to look for us but since you did I'm glad you found us.

There are no easy answers to your question. Pulmonary fibrosis is defined as scarrring in the lungs. There are over 200 different types of interstitial lung disease that can cause this scarring. Without knowing what type of interstitial lung disease you have it's impossible to say what the future may hold. Even having that information those kinds of predictions are almost always inaccurate.

What we tend to focus on around here is figuring out how to LIVE with pulmonary fibrosis.

My first suggestion to you would be to go back to your pulmonologist with a list of questions. How was your diagnosis reached? What kinds of tests have they done? Do they plan to do more? What do they think caused your pulmonary fibrosis? Reading this board you will come up with many questions.

I don't know where you live but it would be well worth your while to get yourself to a university medical center with doctors who specialize in ILD's. Our disease is fairly rare and the average pulmo does not see it often. You will have to advocate for yourself.

I was diagnosed with a form of pulmonary fibrosis two and a half years ago. I've been on oxygen 24/7 since that time. I've remained pretty much stable since then. My life continues. I'm 49, and I no longer work but I'm fairly active and can do most things as long as I take my time and have enough oxygen with me.

Please continue reading, ask lots of questions and try not to be too afraid. It's overwhelming but here you are among friends!

Beth in North Carolina

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, January 12, 2009 8:54:18 AMSubject: 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

[Guest guest]

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

[Guest guest]

Joyce , Welcome to our group. We are all sad when we get new members because of the circumstances. You have landed in the best support group of people anywhere. You will get answers to your questions and advise on living with this monster. I think if I were you and could I would see if there is another Pulmonary in your area. Our Dr's here are mostly at university teaching hospitals with pulmonary departments. You should be able to sit and talk with your Dr and get answers to all your questions. Some here on the board want to know exactly what caused their fibrosis, Some (like me) just except it  because I can't change it. I have a few ideas of what it may have been but can't be sure so why bother. The treatment is basically the same. I don't think enough to risk an OLB (open lung biopsy) some do. YOU do have a choice. You are doing the right thing to stay as active as you can as long as you can. I am thinking of 1000000 things I would like to tell you but I know you will get replies from other membersand they will be offering advise and support also. One thing---with you being so active you need an oximeter o monitor you oxygen saturation. It is so veryimportant to KEEP a watch that it does not go below 90 as they is when your heart, brain and other organs begin to suffer, There is a site you can order one for $65.00 I have forgotten the address but an sure someone will post it. That is so important to know how your body uses oxygen..Ok before I overwhelm you I'll just say again Welcome.God Bless you. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  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 diagnosedHi 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

[Guest guest]

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.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

To: Breathe-Support Sent: Monday, January 12, 2009 10:24:23 AMSubject: 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

[Guest guest]

Very well said Beth, Just want to add we are having a group pow-wow meeting in Orlando in March.If your interested. Oh I forgot about your animals.. well the information is available if you need it.   Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly."  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.htmOnce 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 CarolinaModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: JOYCE RUDY <greycharlie@q.com>To: Breathe-Support Sent: Monday, January 12, 2009 10:24:23 AMSubject: Re: newly diagnosedHi 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 diagnosedHi 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

[Guest guest]

Joyce: I am also new to this whole thing, and I have found this group to be invaluable. They (we) are a bunch of warm, caring people who are knowledgeable about this disease, and very willing to share. I know what you mean by "I don't feel like I am going to die". Personally, I feel perfectly fine except for the tiredness, the shortness of breath, the coughing and the wheezing. When I'm not doing those things, all seems well. You would not know I am ill to look at me. But - ill I am. And living my life despite it. You will too, with a little help from your friends (air friends, particularly.) Welcome to the forum, and God bless you. BJOYCE RUDY wrote: 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 Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

[Guest guest]

Joyce: I am also new to this whole thing, and I have found this group to be invaluable. They (we) are a bunch of warm, caring people who are knowledgeable about this disease, and very willing to share. I know what you mean by "I don't feel like I am going to die". Personally, I feel perfectly fine except for the tiredness, the shortness of breath, the coughing and the wheezing. When I'm not doing those things, all seems well. You would not know I am ill to look at me. But - ill I am. And living my life despite it. You will too, with a little help from your friends (air friends, particularly.) Welcome to the forum, and God bless you. BJOYCE RUDY wrote: 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 Barbara McDIPF, Sept 08Beautiful Western NC Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up. Galatians 6:9

[Guest guest]

Hello Joyce R.... welcome to our board. I feel sad as I read your posts this morning. I can feel your confusion and fear but know that you are in the best place you can be to learn about and fight PF!

I also cannot take steroids and I have opted not to have a bio, not even the bronc. So far x-rays, Cscans and PFTs (Pulmonary Function Tests) provide enough info for my pulmodude. Even a 6-min. walk, (have you done that?), can give lots of info.

Unfortunately, our disease is not an easy one to come to terms with. Yes, it is fatal, and no, there is no treatment or cure. Even when a bio is done and dx (diagnosed) the primary treatment is prednisone, which has such horrid side effects (for some people), depending on the dose, that for me I won't take it anyway. I have taken it short term, low dosage.

I'm sorry you seem to have no other dr to see. The pulmodude (...dudette?) would seem to be a better bet than PP.

I was dx almost 3 years ago and have remained fairly stable since. I am on O2 at night and with exertion.

Take an O2 cylinder w/you when you are exerting yourself. Put it in the grocery cart and away you go! It helps so much when walking.

You can also purchase (hopefully) an oximeter through www.portablenebs.com

for $65. They are FDA approved and many of us here have one. Don't let your o2 levels fall below 90 at any time. Lack of o2 to other organs can be harmful.

I've been to Prescott. Beautiful. I'm in Oregon.

God Bless you Joyce.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

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

[Guest guest]

Hello Joyce R.... welcome to our board. I feel sad as I read your posts this morning. I can feel your confusion and fear but know that you are in the best place you can be to learn about and fight PF!

I also cannot take steroids and I have opted not to have a bio, not even the bronc. So far x-rays, Cscans and PFTs (Pulmonary Function Tests) provide enough info for my pulmodude. Even a 6-min. walk, (have you done that?), can give lots of info.

Unfortunately, our disease is not an easy one to come to terms with. Yes, it is fatal, and no, there is no treatment or cure. Even when a bio is done and dx (diagnosed) the primary treatment is prednisone, which has such horrid side effects (for some people), depending on the dose, that for me I won't take it anyway. I have taken it short term, low dosage.

I'm sorry you seem to have no other dr to see. The pulmodude (...dudette?) would seem to be a better bet than PP.

I was dx almost 3 years ago and have remained fairly stable since. I am on O2 at night and with exertion.

Take an O2 cylinder w/you when you are exerting yourself. Put it in the grocery cart and away you go! It helps so much when walking.

You can also purchase (hopefully) an oximeter through www.portablenebs.com

for $65. They are FDA approved and many of us here have one. Don't let your o2 levels fall below 90 at any time. Lack of o2 to other organs can be harmful.

I've been to Prescott. Beautiful. I'm in Oregon.

God Bless you Joyce.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

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

[Guest guest]

Joyce

You need to read here all you can about VATS, the reasons people have

these biopsy's and the results. The pain goes from very little to

extended hospitalization. It is very invasive surgery but generally not

life threatening. It is painful to most of us. But, its the one way to

be sure what you have. Now that only matters if you then have a use for

that information, such as using it to make treatment decisions or to

enter clinical trials.

I'm going to come back to you again though with getting to a major

teaching hospital with an Interstitial Lung Disease specialty. I often

recommend one of the 13 IPF Centers of Excellence, as shown here:

https://www.ipfnet.org/

It is the twelve on the map plus Duke University. You can still get your

ordinary care locally but at one of these you can see people who are

very knowledgeable and deal with the disease every day. Most

pulmonologists rarely see it. You can learn more on a one day trip to

one of these than you can imagine. I drove from Dallas to the University

of Chicago for mine. We have those who have been all around.

I reiterate to not be intimidated by the doctors or their attitudes.

Also, take control of your medical care. Get copies of everything,

including CT's, PFT's Labs, Biopsy reports. Have your slides been looked

at by a second pulmonologist experienced with the disease? Mayo in

sdale has one highly regarded.

>

> 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.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

>

[Guest guest]

You need to ask your Doc for a simple blood test called Hypersensitivity pneumonitis antibody panels; It will show if you are allergic to all sorts of thing that might cause your lung problemhttp://www.medicinenet.com/hypersensitivity_pneumonitis/article.htmhttp://pennhealth.com/ency/article/000109.htm P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 9 LPM 8/04, PH 3/06, ILL yo 60Subject: Re: newly

diagnosedTo: Breathe-Support Date: Monday, January 12, 2009, 9:24 AM

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

[Guest guest]

What are the details on the "pow wow" in Florida in March? Sandy IPF 3/08, Florida

To: Breathe-Support Sent: Monday, January 12, 2009 11:17:02 AMSubject: Re: newly diagnosedVery well said Beth, Just want to add we are having a group pow-wow meeting in Orlando in March.

If your interested. Oh I forgot about your animals.. well the information is available if you need it.

Love & Prayers, Peggy

Florida, IPF/UIP 2004

"I believe that friends are quiet angels who lift us to our feet,

when our wings have trouble remembering how to fly."

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.portable nebs.com/ 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@ q.com>To: Breathe-Support@ yahoogroups. comSent: Monday, January 12, 2009 10:24:23 AMSubject: 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

[Guest guest]

Joyce Rudy, Welcome to the best group on

earth!!!!

You are scared, confused and over whelmed..that's absolutely natural!!!!

We have all been there...and have the pictures to prove it!!!

Many of us have had the biopsy ( I did)..it wasn't as gruesome as you

have been led to believe.

Yes it's surgery, yes it's invasive, yes it's painful at the

start...but I got my diagnosis and the beginning of my

ability to LIVE with a form of PF. Your life activities may need

changing a bit, your pace may need to be slower,

but you will LIVE with PF.

In answer to your Costco question...damn right use the cart...save your

precious energy for the fun stuff!!!

I've learned over the time since DX that my daily energy level is

finite...I cannot just do whatever

as things come up. I need to plan ahead...use what energy I need for

the everyday stuff and then use the

rest for my grand daughters and my kids, husband and friends. I stay

away from negative activities

and especially negative people too.

Keep reading the posts, click on the links at the bottom of the page to

read all the previos posts.

There is a database with good questions for your docs there too.

Welcome to the "air family". We're here for each other.

Get yourself to a teaching hospital...they at least know what PF is!!!

Z fibriotic NSIP/05

Z 64,

fibriotic NSIP/o5/PAmy

And “mild”

PH/10/07 and Reynaud’s too!!

No, NSIP was not

self-inflicted…I never smoked!

Potter,

reader,carousel lover and MomMom to

Darah

and Sara

“I’m gonna

be iron like a lion in Zion” Bob Marley

Vinca

Minor-periwinkle is my flower

JOYCE RUDY wrote:

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

No virus found in this incoming message.

Checked by AVG - http://www.avg.com Version: 8.0.176 / Virus Database: 270.10.6/1888 - Release Date: 1/12/2009 7:04 AM

[Guest guest]

Joyce,

Welcome to the group. You are in great company.

In reading your post I notice 2 things that concern me.

1. Aerobic exercise: I was told by my Pulmonary Therapist in

Pulmonary Rehab that Aerobic excercise can be unhealthy for patients

with PF. In rehab we learn to breathe properly while exercising and

how to recognize when we are pushing ourselves too hard. Cardio is

our most valuable exercise as it helps keep our hearts healthy and

strong.

2. You have 7 birds: Bird dander and droppings can be a contributing

factor in some Iterstitial Lung Diseases.

I am a strong believer that an Open Lung Biopsy can be a very

valuable tool. In my case it showed my PF was purely " idiopathic, "

meaning there was no known cause. That diagnosis at least tells the

doctor what treatments do not work.

However, if you have the biopsy and the doctor is able to make a more

specific diagnosis. This will give you and your doctor the

information you both need in order for you to be treated properly.

I won't lie, the biopsy hurts and you will have to ask friends or

family for help. But you will have answers and the power of

knowledge.

Best Wishes

33/FL/ IPF 1/06

>

> 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.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

> 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

>

[Guest guest]

Hello Joyce,

My name is Godfrey. I live in Anthem, Az. about 85 miles from Prescott. Sorry to hear about your diagnosis, glad you found us and I see that our board members have already given you the best advise you will probably get any where.

The oximeter is an absolute must and the web site given is the best place to get it. My insurance paid for mine because the Dr. prescribed it and the medical supply company charged them $200.00 for the exact same one on the web site for $65.00.

(one of our members) gave an excellent suggestion about getting checked for allergies. One of the issues and potential causes of Pf could involve Birds and their droppings, we do have 1 member (Teri P.) that lives in Las Vagas who is a bird lover and had to get rid of her birds. I am an animal lover and my best friend is my 10 year old yellow lab (Dakota) who will absolutely be with me until--- well no Doctor is going to come between us ---!!!

I was inially diagnosed with PF in June '07 at the Mayo Clinic in sdale Az. After

a "wait and see" period and a negative experience with the Mayo people, I went back to a Pulmonologist that I liked and seemed to be on top of my problem from the get go. He actually lives in Anthem about 1 mile from my house, but I have to go into Phoenix to get to his office. He has been very good for me, he explained the VATS biopsy to me, told me the pros & cons, & after talking with my wife who is a RN, I decided to do it, he lined me up with a fantastic surgeon that was so good he almost makes me want to have another surgery just so he can do it again. I had a very good experience with my VATS,----BUT I have had at least 12 surgerys for various thing in my life and I ALWAYS come through with flying colors, so it would be hard for me to give advise about what anyone else should do, because some people don't do well with surgery.

I do go up to Prescott once in a while, I like the area and was actually thinking about moving there to a place called Granite Park, its about 3-4 miles south of the airport, but I do love the 100-115 heat---I really seem to breathe alot better and some times I can go a couple days without remembering that I have IPF, so I stayed in Anthem.

I'm sure we will get the chance to meet and talk about our life and problems, although I don't consider them problems, its more like opportunities that we have now that never existed before. You are welcome to contact me by my personal Email, or through the board, if you have any questions about the DRs, hospitals, or what ever,--- till then good luck and God Bless

G. UIP/IPF 5/07 Az.

I

[Guest guest]

Hi Joyce

I 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 be

afraid. I had no problem with it at all. They made two small

incisions on my right side down a little from my armpit. Then they

insert the camera in one incision and the thing that will cut a piece

off for them to biopsy. When I woke up I felt fine, sore but then

they gave me pain meds and I was fine. Coughing at first hurt a

little because you are coughing up " gook " . I was in intensive care

for 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 do

not not intensive watching) but I was doing so well they discharged

me. Again, I felt a little soreness but with the percocet they gave

me I was fine. After about a week I went back to work. IT really was

not a bad thing for me at all and it really is helpful to them in

figuring out which of the many interstitial lung diseases you have and

what they can or cannot do. Any questions let us know.

I only recently found this support group and how I wish I found them 2

years ago. It has been a scary thing to go thru but I feel so much

better with these wonderful people. Some support groups are very down

and miserable. These people are all so up and happy and full of

information that no one who is not going thru it would know. They are

all 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 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

>

[Guest guest]

Hi Joyce

I 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 be

afraid. I had no problem with it at all. They made two small

incisions on my right side down a little from my armpit. Then they

insert the camera in one incision and the thing that will cut a piece

off for them to biopsy. When I woke up I felt fine, sore but then

they gave me pain meds and I was fine. Coughing at first hurt a

little because you are coughing up " gook " . I was in intensive care

for 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 do

not not intensive watching) but I was doing so well they discharged

me. Again, I felt a little soreness but with the percocet they gave

me I was fine. After about a week I went back to work. IT really was

not a bad thing for me at all and it really is helpful to them in

figuring out which of the many interstitial lung diseases you have and

what they can or cannot do. Any questions let us know.

I only recently found this support group and how I wish I found them 2

years ago. It has been a scary thing to go thru but I feel so much

better with these wonderful people. Some support groups are very down

and miserable. These people are all so up and happy and full of

information that no one who is not going thru it would know. They are

all 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 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

>

[Guest guest]

Hi Joyce

I 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 be

afraid. I had no problem with it at all. They made two small

incisions on my right side down a little from my armpit. Then they

insert the camera in one incision and the thing that will cut a piece

off for them to biopsy. When I woke up I felt fine, sore but then

they gave me pain meds and I was fine. Coughing at first hurt a

little because you are coughing up " gook " . I was in intensive care

for 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 do

not not intensive watching) but I was doing so well they discharged

me. Again, I felt a little soreness but with the percocet they gave

me I was fine. After about a week I went back to work. IT really was

not a bad thing for me at all and it really is helpful to them in

figuring out which of the many interstitial lung diseases you have and

what they can or cannot do. Any questions let us know.

I only recently found this support group and how I wish I found them 2

years ago. It has been a scary thing to go thru but I feel so much

better with these wonderful people. Some support groups are very down

and miserable. These people are all so up and happy and full of

information that no one who is not going thru it would know. They are

all 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 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

>

[Guest guest]

... just want to say Hi! I'm doing ok and hope you are too.

Our weather has cleared and we are looking forward to a little sunshine here in this part of Oregon.

A pat on the head to Dakota...I can understand why you love him so, that dog is priceless. I feel in love with him too.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re:newly diagnosed

Hello Joyce,

My name is Godfrey. I live in Anthem, Az. about 85 miles from Prescott. Sorry to hear about your diagnosis, glad you found us and I see that our board members have already given you the best advise you will probably get any where.

The oximeter is an absolute must and the web site given is the best place to get it. My insurance paid for mine because the Dr. prescribed it and the medical supply company charged them $200.00 for the exact same one on the web site for $65.00.

(one of our members) gave an excellent suggestion about getting checked for allergies. One of the issues and potential causes of Pf could involve Birds and their droppings, we do have 1 member (Teri P.) that lives in Las Vagas who is a bird lover and had to get rid of her birds. I am an animal lover and my best friend is my 10 year old yellow lab (Dakota) who will absolutely be with me until--- well no Doctor is going to come between us ---!!!

I was inially diagnosed with PF in June '07 at the Mayo Clinic in sdale Az. After

a "wait and see" period and a negative experience with the Mayo people, I went back to a Pulmonologist that I liked and seemed to be on top of my problem from the get go. He actually lives in Anthem about 1 mile from my house, but I have to go into Phoenix to get to his office. He has been very good for me, he explained the VATS biopsy to me, told me the pros & cons, & after talking with my wife who is a RN, I decided to do it, he lined me up with a fantastic surgeon that was so good he almost makes me want to have another surgery just so he can do it again. I had a very good experience with my VATS,----BUT I have had at least 12 surgerys for various thing in my life and I ALWAYS come through with flying colors, so it would be hard for me to give advise about what anyone else should do, because some people don't do well with surgery.

I do go up to Prescott once in a while, I like the area and was actually thinking about moving there to a place called Granite Park, its about 3-4 miles south of the airport, but I do love the 100-115 heat---I really seem to breathe alot better and some times I can go a couple days without remembering that I have IPF, so I stayed in Anthem.

I'm sure we will get the chance to meet and talk about our life and problems, although I don't consider them problems, its more like opportunities that we have now that never existed before. You are welcome to contact me by my personal Email, or through the board, if you have any questions about the DRs, hospitals, or what ever,--- till then good luck and God Bless

G. UIP/IPF 5/07 Az.

I

[Guest guest]

... just want to say Hi! I'm doing ok and hope you are too.

Our weather has cleared and we are looking forward to a little sunshine here in this part of Oregon.

A pat on the head to Dakota...I can understand why you love him so, that dog is priceless. I feel in love with him too.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re:newly diagnosed

Hello Joyce,

My name is Godfrey. I live in Anthem, Az. about 85 miles from Prescott. Sorry to hear about your diagnosis, glad you found us and I see that our board members have already given you the best advise you will probably get any where.

The oximeter is an absolute must and the web site given is the best place to get it. My insurance paid for mine because the Dr. prescribed it and the medical supply company charged them $200.00 for the exact same one on the web site for $65.00.

(one of our members) gave an excellent suggestion about getting checked for allergies. One of the issues and potential causes of Pf could involve Birds and their droppings, we do have 1 member (Teri P.) that lives in Las Vagas who is a bird lover and had to get rid of her birds. I am an animal lover and my best friend is my 10 year old yellow lab (Dakota) who will absolutely be with me until--- well no Doctor is going to come between us ---!!!

I was inially diagnosed with PF in June '07 at the Mayo Clinic in sdale Az. After

a "wait and see" period and a negative experience with the Mayo people, I went back to a Pulmonologist that I liked and seemed to be on top of my problem from the get go. He actually lives in Anthem about 1 mile from my house, but I have to go into Phoenix to get to his office. He has been very good for me, he explained the VATS biopsy to me, told me the pros & cons, & after talking with my wife who is a RN, I decided to do it, he lined me up with a fantastic surgeon that was so good he almost makes me want to have another surgery just so he can do it again. I had a very good experience with my VATS,----BUT I have had at least 12 surgerys for various thing in my life and I ALWAYS come through with flying colors, so it would be hard for me to give advise about what anyone else should do, because some people don't do well with surgery.

I do go up to Prescott once in a while, I like the area and was actually thinking about moving there to a place called Granite Park, its about 3-4 miles south of the airport, but I do love the 100-115 heat---I really seem to breathe alot better and some times I can go a couple days without remembering that I have IPF, so I stayed in Anthem.

I'm sure we will get the chance to meet and talk about our life and problems, although I don't consider them problems, its more like opportunities that we have now that never existed before. You are welcome to contact me by my personal Email, or through the board, if you have any questions about the DRs, hospitals, or what ever,--- till then good luck and God Bless

G. UIP/IPF 5/07 Az.

I

[Guest guest]

... just want to say Hi! I'm doing ok and hope you are too.

Our weather has cleared and we are looking forward to a little sunshine here in this part of Oregon.

A pat on the head to Dakota...I can understand why you love him so, that dog is priceless. I feel in love with him too.

MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Re:newly diagnosed

Hello Joyce,

My name is Godfrey. I live in Anthem, Az. about 85 miles from Prescott. Sorry to hear about your diagnosis, glad you found us and I see that our board members have already given you the best advise you will probably get any where.

The oximeter is an absolute must and the web site given is the best place to get it. My insurance paid for mine because the Dr. prescribed it and the medical supply company charged them $200.00 for the exact same one on the web site for $65.00.

(one of our members) gave an excellent suggestion about getting checked for allergies. One of the issues and potential causes of Pf could involve Birds and their droppings, we do have 1 member (Teri P.) that lives in Las Vagas who is a bird lover and had to get rid of her birds. I am an animal lover and my best friend is my 10 year old yellow lab (Dakota) who will absolutely be with me until--- well no Doctor is going to come between us ---!!!

I was inially diagnosed with PF in June '07 at the Mayo Clinic in sdale Az. After

a "wait and see" period and a negative experience with the Mayo people, I went back to a Pulmonologist that I liked and seemed to be on top of my problem from the get go. He actually lives in Anthem about 1 mile from my house, but I have to go into Phoenix to get to his office. He has been very good for me, he explained the VATS biopsy to me, told me the pros & cons, & after talking with my wife who is a RN, I decided to do it, he lined me up with a fantastic surgeon that was so good he almost makes me want to have another surgery just so he can do it again. I had a very good experience with my VATS,----BUT I have had at least 12 surgerys for various thing in my life and I ALWAYS come through with flying colors, so it would be hard for me to give advise about what anyone else should do, because some people don't do well with surgery.

I do go up to Prescott once in a while, I like the area and was actually thinking about moving there to a place called Granite Park, its about 3-4 miles south of the airport, but I do love the 100-115 heat---I really seem to breathe alot better and some times I can go a couple days without remembering that I have IPF, so I stayed in Anthem.

I'm sure we will get the chance to meet and talk about our life and problems, although I don't consider them problems, its more like opportunities that we have now that never existed before. You are welcome to contact me by my personal Email, or through the board, if you have any questions about the DRs, hospitals, or what ever,--- till then good luck and God Bless

G. UIP/IPF 5/07 Az.

I