Re: good news/bad news you be the judge........

[Guest guest]

Hi, ....You must be frustrated by this news. I've been thinking about seeing another Pulm. here in Seattle. Does anyone know of a good pulm here? I am currently seeing Dr. Pearson at Harbor View. Thanks, Joy jaime wrote: i saw my new pulm today. she is one who is recommended by the PFF..she also has a reputation for being one of the best pulms in the houston area.upon reviewing my old and new cat scan

film side by side, the biopsy report, blood work, etc....she says there is absolutely no way i have pulmonary fibrosis.is this good? yes and no. i however do have a severe case of eosinophilic granuloma aka langerhan's which is what barb in ky also has. this too is incurable and there are no known meds to treat with.at this point the actimmune injections are being stopped. the prednisone i am being weaned off of 5mg at a time each week until it is gone. i was told however that i should have been on bactim since the day prednisone was started because of the fact that prednisone destroys your immune system and the body has no way of fighting off infections. so now i am being put on bactim every other day until 30 days after my last dose of prednisone.i am also being referred to the transplant team at baylor to undergo transplant evaluation.( of course they have to get insurance approval for all

evaluation procedures before they will schedule anything and i was told to expect 10 days of rigorous testing) YIKES!good news. life expectancy has just gone from 2 yrs to 13 but i still need my O2 upon physical exertion and for sleeping. i had my first 6 minute walk test today and with the O2 at 2 liters at the end of the 6 minutes my stats were 84.....not so good and the machine kept clicking off because the battery was low so the tech really couldn't tell how much my stats had dropped until she plugged it in and printed out the report. DUH! batteries aren't that expensive! especially if ya get the rechargable kind!4 dr's and 4 different opinions....which one am i supposed to take to heart. also my biopsy slides are going to be stained AGAIN for conclusive diagnosis.this is all the news i have for now. dx? who the heck nows these days

lol Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy

[Guest guest]

Hi Joy, There is a Dr.named Ganesh Raghu at the U of Washington. I know nothing about him personally except that I know he has written research articles about our disease. I was told by someone with our disease that he was "among the best" I am in the Chicago area where we have good Drs. so haven't contacted him. I know nothing about his bedside manner or availability. You can go on Google and find his location, how to contact him etc. (I just did it by putting in his name) it must be frustrating for you, but maybe it will turn out to be really good news. I think it is frustrating for the Drs., too, because there is so much they don't know about this disease. glocaskeyJoy Kiefner wrote: Hi, ....You must be frustrated by this news. I've been thinking about seeing another Pulm. here in Seattle. Does anyone know of a good pulm here? I am currently seeing Dr. Pearson at Harbor View. Thanks, Joy jaime <laddergalhotmail> wrote: i saw my new pulm today. she is one who is recommended by the PFF..she also has a reputation for being one of the best pulms in the houston

area.upon reviewing my old and new cat scan film side by side, the biopsy report, blood work, etc....she says there is absolutely no way i have pulmonary fibrosis.is this good? yes and no. i however do have a severe case of eosinophilic granuloma aka langerhan's which is what barb in ky also has. this too is incurable and there are no known meds to treat with.at this point the actimmune injections are being stopped. the prednisone i am being weaned off of 5mg at a time each week until it is gone. i was told however that i should have been on bactim since the day prednisone was started because of the fact that prednisone destroys your immune system and the body has no way of fighting off infections. so now i am being put on bactim every other day until 30 days after my last dose of prednisone.i am also being referred to the transplant team at baylor to undergo transplant evaluation.( of course they

have to get insurance approval for all evaluation procedures before they will schedule anything and i was told to expect 10 days of rigorous testing) YIKES!good news. life expectancy has just gone from 2 yrs to 13 but i still need my O2 upon physical exertion and for sleeping. i had my first 6 minute walk test today and with the O2 at 2 liters at the end of the 6 minutes my stats were 84.....not so good and the machine kept clicking off because the battery was low so the tech really couldn't tell how much my stats had dropped until she plugged it in and printed out the report. DUH! batteries aren't that expensive! especially if ya get the rechargable kind!4 dr's and 4 different opinions....which one am i supposed to take to heart. also my biopsy slides are going to be stained AGAIN for conclusive diagnosis.this is all the news i have for now. dx? who the heck nows these days

lol Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy

Stay in the know. Pulse on the new Yahoo.com. Check it out.

[Guest guest]

Hi ..YEs, I know about Dr. Raghu. My doc is from the same hospital..University of Washington. My problem is money. I don't have insurance. U of W has a "charity program"....it takes forever and lots of questions..To visit him it cost's $150 up front. Thank you so much. Hope you are doing well with all the comfusion.....Joy ipr 3/06glo caskey wrote: Hi Joy, There is a Dr.named Ganesh Raghu at the U of Washington. I know

nothing about him personally except that I know he has written research articles about our disease. I was told by someone with our disease that he was "among the best" I am in the Chicago area where we have good Drs. so haven't contacted him. I know nothing about his bedside manner or availability. You can go on Google and find his location, how to contact him etc. (I just did it by putting in his name) it must be frustrating for you, but maybe it will turn out to be really good news. I think it is frustrating for the Drs., too, because there is so much they don't know about this disease. glocaskeyJoy Kiefner <joynoel3208> wrote: Hi, ....You must be frustrated by this news. I've

been thinking about seeing another Pulm. here in Seattle. Does anyone know of a good pulm here? I am currently seeing Dr. Pearson at Harbor View. Thanks, Joy jaime <laddergalhotmail> wrote: i saw my new pulm today. she is one who is recommended by the PFF..she also has a reputation for being one of the best pulms in the houston area.upon reviewing my old and new cat scan film side by side, the biopsy report, blood work, etc....she says there is absolutely no way i have pulmonary fibrosis.is this good? yes and no. i however do have a severe case of eosinophilic granuloma aka langerhan's which is what barb in ky also has. this too is incurable and there are no known meds to treat with.at this point the

actimmune injections are being stopped. the prednisone i am being weaned off of 5mg at a time each week until it is gone. i was told however that i should have been on bactim since the day prednisone was started because of the fact that prednisone destroys your immune system and the body has no way of fighting off infections. so now i am being put on bactim every other day until 30 days after my last dose of prednisone.i am also being referred to the transplant team at baylor to undergo transplant evaluation.( of course they have to get insurance approval for all evaluation procedures before they will schedule anything and i was told to expect 10 days of rigorous testing) YIKES!good news. life expectancy has just gone from 2 yrs to 13 but i still need my O2 upon physical exertion and for sleeping. i had my first 6 minute walk test today and with the O2 at 2 liters at the end of the 6 minutes my stats were

84.....not so good and the machine kept clicking off because the battery was low so the tech really couldn't tell how much my stats had dropped until she plugged it in and printed out the report. DUH! batteries aren't that expensive! especially if ya get the rechargable kind!4 dr's and 4 different opinions....which one am i supposed to take to heart. also my biopsy slides are going to be stained AGAIN for conclusive diagnosis.this is all the news i have for now. dx? who the heck nows these days lol Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy Stay in the know. Pulse on the new Yahoo.com. Check it out. Live one day at a time. It's a gift

to each of us. We need to use each day with care. Joy

[Guest guest]

Hi Joy, I think I have give up on doctors knowing anything about how to help us with the so called umteem lung diseases. They {the doctors} have discovered some herbal mixtures that (might) help us. I hope research will help them find help for us. Just wanted you to know we are all in this boat together and need to huddle close, hold on tight and pray for someone to come up with answers. Your friend Grey IPF/10-05

Re: good news/bad news you be the judge........

Hi ..YEs, I know about Dr. Raghu. My doc is from the same hospital..University of Washington. My problem is money. I don't have insurance. U of W has a "charity program"....it takes forever and lots of questions..To visit him it cost's $150 up front. Thank you so much. Hope you are doing well with all the comfusion.....Joy ipr 3/06glo caskey <glocaskey> wrote:

Hi Joy,

There is a Dr.named Ganesh Raghu at the U of Washington. I know nothing about him personally except that I know he has written research articles about our disease.

I was told by someone with our disease that he was "among the best" I am in the Chicago area where we have good Drs. so haven't contacted him. I know nothing about his bedside manner or availability. You can go on Google and find his location, how to contact him etc. (I just did it by putting in his name)

it must be frustrating for you, but maybe it will turn out to be really good news. I think it is frustrating for the Drs., too, because there is so much they don't know about this disease.

glocaskeyJoy Kiefner <joynoel3208> wrote:

Hi, ....You must be frustrated by this news. I've been thinking about seeing another Pulm. here in Seattle. Does anyone know of a good pulm here? I am currently seeing Dr. Pearson at Harbor View. Thanks, Joy

jaime <laddergalhotmail> wrote:

i saw my new pulm today. she is one who is recommended by the PFF..she also has a reputation for being one of the best pulms in the houston area.upon reviewing my old and new cat scan film side by side, the biopsy report, blood work, etc....she says there is absolutely no way i have pulmonary fibrosis.is this good? yes and no. i however do have a severe case of eosinophilic granuloma aka langerhan's which is what barb in ky also has. this too is incurable and there are no known meds to treat with.at this point the actimmune injections are being stopped. the prednisone i am being weaned off of 5mg at a time each week until it is gone. i was told however that i should have been on bactim since the day prednisone was started because of the fact that prednisone destroys your immune system and the body has no way of fighting off infections. so now i am being put on bactim every other day until 30 days after my last dose of prednisone.i am also being referred to the transplant team at baylor to undergo transplant evaluation.( of course they have to get insurance approval for all evaluation procedures before they will schedule anything and i was told to expect 10 days of rigorous testing) YIKES!good news. life expectancy has just gone from 2 yrs to 13 but i still need my O2 upon physical exertion and for sleeping. i had my first 6 minute walk test today and with the O2 at 2 liters at the end of the 6 minutes my stats were 84.....not so good and the machine kept clicking off because the battery was low so the tech really couldn't tell how much my stats had dropped until she plugged it in and printed out the report. DUH! batteries aren't that expensive! especially if ya get the rechargable kind!4 dr's and 4 different opinions....which one am i supposed to take to heart. also my biopsy slides are going to be stained AGAIN for conclusive diagnosis.this is all the news i have for now. dx? who the heck nows these days lol Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy

Stay in the know. Pulse on the new Yahoo.com. Check it out. Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy

[Guest guest]

Hi! Yeah, some days are harder than others. I'm not even in the critical stage..but, always curious about it. I'm not afraid...just don't want pain!!! Joy jg singletary wrote: Hi Joy, I think I have give up on doctors knowing anything about how to help us with the so called umteem lung diseases. They {the doctors} have discovered some herbal mixtures that (might) help us. I hope research will help them find help for

us. Just wanted you to know we are all in this boat together and need to huddle close, hold on tight and pray for someone to come up with answers. Your friend Grey IPF/10-05 Re: good news/bad news you be the judge........ Hi ..YEs, I know about Dr. Raghu. My doc is from the same

hospital..University of Washington. My problem is money. I don't have insurance. U of W has a "charity program"....it takes forever and lots of questions..To visit him it cost's $150 up front. Thank you so much. Hope you are doing well with all the comfusion.....Joy ipr 3/06glo caskey <glocaskey> wrote: Hi Joy, There is a Dr.named Ganesh Raghu at the U of Washington. I know nothing about him personally except that I know he has written research articles about our disease. I was told by someone with our disease that he was "among the best" I am in the Chicago area where we have good Drs. so haven't contacted him. I know nothing about his bedside manner or availability. You can go on Google and find

his location, how to contact him etc. (I just did it by putting in his name) it must be frustrating for you, but maybe it will turn out to be really good news. I think it is frustrating for the Drs., too, because there is so much they don't know about this disease. glocaskeyJoy Kiefner <joynoel3208> wrote: Hi, ....You must be frustrated by this news. I've been thinking about seeing another Pulm. here in Seattle. Does anyone know of a good pulm here? I am currently seeing Dr. Pearson at Harbor View. Thanks, Joy jaime <laddergalhotmail> wrote: i saw my new pulm today. she is one who is recommended by the PFF..she also has a reputation for being one of the best pulms in the houston area.upon reviewing my old and new cat scan film side by side, the biopsy report, blood work, etc....she says there is absolutely no way i have pulmonary fibrosis.is this good? yes and no. i however do have a severe case of eosinophilic granuloma aka langerhan's which is what barb in ky also has. this too is incurable and there are no known meds to treat with.at this point the actimmune injections are being stopped. the prednisone i am being weaned off of 5mg at a time each week until it is gone. i was told however that i should have been on bactim since the day prednisone was started because of the fact that prednisone destroys your immune system and the body has no way of fighting off infections. so now i am

being put on bactim every other day until 30 days after my last dose of prednisone.i am also being referred to the transplant team at baylor to undergo transplant evaluation.( of course they have to get insurance approval for all evaluation procedures before they will schedule anything and i was told to expect 10 days of rigorous testing) YIKES!good news. life expectancy has just gone from 2 yrs to 13 but i still need my O2 upon physical exertion and for sleeping. i had my first 6 minute walk test today and with the O2 at 2 liters at the end of the 6 minutes my stats were 84.....not so good and the machine kept clicking off because the battery was low so the tech really couldn't tell how much my stats had dropped until she plugged it in and printed out the report. DUH! batteries aren't that expensive! especially if ya get the rechargable kind!4 dr's and 4 different opinions....which one am i supposed

to take to heart. also my biopsy slides are going to be stained AGAIN for conclusive diagnosis.this is all the news i have for now. dx? who the heck nows these days lol Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy Stay in the know. Pulse on the new Yahoo.com. Check it out. Live one day at a time. It's a gift to each of

us. We need to use each day with care. Joy Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

[Guest guest]

,

Because eosinophilic granuloma is an interstitial lung disease, perhaps that is why they referred to it as PF. From what I read there is a definate test that they do to determine it. Evidently they did that already because they told you some time back that you had it, right? They do treat it with prednisone, so I am confused as to why they are stopping that.......unless your CTs are getting worse. Are they? I am thinking that they are weaning really fast!

It is also very rare. You are sooooooo smart to be agressive about getting medical help. Most people don't do that. You are a curious person and believe me that will work for your good!

I would advise you to go for the evaluation. The workup is so intense and very thorough. I do think that the transplant doctors are all about getting you into the transplant program. They are not looking to treat your disease, but to transplant organs. You are intelligent and will be able to spot that if it occurs. If you go ask for reports, etc. I asked and finally insisted on it and I recieved a huge package of information and all my various test results. I keep everything and try to manage my health care. After all, NO ONE is going to be as interested in you as you!

You have been 'round the bend'....but I will say again you have handled your medical care better than half the population would have! Spunk goes a long way!

Hugs,

Joyce PF 1997 >> i saw my new pulm today. she is one who is recommended by the > PFF..she also has a reputation for being one of the best pulms in > the houston area.> > upon reviewing my old and new cat scan film side by side, the biopsy > report, blood work, etc....she says there is absolutely no way i > have pulmonary fibrosis.> > is this good? yes and no. i however do have a severe case of > eosinophilic granuloma aka langerhan's which is what barb in ky also > has. this too is incurable and there are no known meds to treat with.> > at this point the actimmune injections are being stopped. the > prednisone i am being weaned off of 5mg at a time each week until it > is gone. i was told however that i should have been on bactim since > the day prednisone was started because of the fact that prednisone > destroys your immune system and the body has no way of fighting off > infections. so now i am being put on bactim every other day until 30 > days after my last dose of prednisone.> > i am also being referred to the transplant team at baylor to undergo > transplant evaluation.( of course they have to get insurance > approval for all evaluation procedures before they will schedule > anything and i was told to expect 10 days of rigorous testing) YIKES!> > good news. life expectancy has just gone from 2 yrs to 13 but i > still need my O2 upon physical exertion and for sleeping. i had my > first 6 minute walk test today and with the O2 at 2 liters at the > end of the 6 minutes my stats were 84.....not so good and the > machine kept clicking off because the battery was low so the tech > really couldn't tell how much my stats had dropped until she plugged > it in and printed out the report. DUH! batteries aren't that > expensive! especially if ya get the rechargable kind!> > 4 dr's and 4 different opinions....which one am i supposed to take > to heart. also my biopsy slides are going to be stained AGAIN for > conclusive diagnosis.> > this is all the news i have for now.> > dx? who the heck nows these days lol>

[Guest guest]

Hello Joy, I sort of feel like you, I don't want pain but we are going to have some down the road as this stuff progresses. I had some bad pain several months ago as I weaned myself off of predisone. Did not see a doctor about it but it was real severe. Chest pain that raidated down my arms and legs. Took pain pills from a former procedure to get me thru whatever was going on. Joy, all I can say is expect the unexpected. My wife is a nurse and I hope she will help me when I get bad. I'm doing good now and we have our little dog molly. She is so precious. Joy, there is no way out of this. Take your meds and see your doctors and last as long as you can. Your friend Grey IPF 10/05

Re: good news/bad news you be the judge........

Hi ..YEs, I know about Dr. Raghu. My doc is from the same hospital..University of Washington. My problem is money. I don't have insurance. U of W has a "charity program"....it takes forever and lots of questions..To visit him it cost's $150 up front. Thank you so much. Hope you are doing well with all the comfusion.....Joy ipr 3/06glo caskey <glocaskey> wrote:

Hi Joy,

There is a Dr.named Ganesh Raghu at the U of Washington. I know nothing about him personally except that I know he has written research articles about our disease.

I was told by someone with our disease that he was "among the best" I am in the Chicago area where we have good Drs. so haven't contacted him. I know nothing about his bedside manner or availability. You can go on Google and find his location, how to contact him etc. (I just did it by putting in his name)

it must be frustrating for you, but maybe it will turn out to be really good news. I think it is frustrating for the Drs., too, because there is so much they don't know about this disease.

glocaskeyJoy Kiefner <joynoel3208> wrote:

Hi, ....You must be frustrated by this news. I've been thinking about seeing another Pulm. here in Seattle. Does anyone know of a good pulm here? I am currently seeing Dr. Pearson at Harbor View. Thanks, Joy

jaime <laddergalhotmail> wrote:

i saw my new pulm today. she is one who is recommended by the PFF..she also has a reputation for being one of the best pulms in the houston area.upon reviewing my old and new cat scan film side by side, the biopsy report, blood work, etc....she says there is absolutely no way i have pulmonary fibrosis.is this good? yes and no. i however do have a severe case of eosinophilic granuloma aka langerhan's which is what barb in ky also has. this too is incurable and there are no known meds to treat with.at this point the actimmune injections are being stopped. the prednisone i am being weaned off of 5mg at a time each week until it is gone. i was told however that i should have been on bactim since the day prednisone was started because of the fact that prednisone destroys your immune system and the body has no way of fighting off infections. so now i am being put on bactim every other day until 30 days after my last dose of prednisone.i am also being referred to the transplant team at baylor to undergo transplant evaluation.( of course they have to get insurance approval for all evaluation procedures before they will schedule anything and i was told to expect 10 days of rigorous testing) YIKES!good news. life expectancy has just gone from 2 yrs to 13 but i still need my O2 upon physical exertion and for sleeping. i had my first 6 minute walk test today and with the O2 at 2 liters at the end of the 6 minutes my stats were 84.....not so good and the machine kept clicking off because the battery was low so the tech really couldn't tell how much my stats had dropped until she plugged it in and printed out the report. DUH! batteries aren't that expensive! especially if ya get the rechargable kind!4 dr's and 4 different opinions....which one am i supposed to take to heart. also my biopsy slides are going to be stained AGAIN for conclusive diagnosis.this is all the news i have for now. dx? who the heck nows these days lol Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy

Stay in the know. Pulse on the new Yahoo.com. Check it out. Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy

Joy

(IPF 3/06)

Today is a gift for each

of us. Enjoy it.

[Guest guest]

, 13 years instead of 2 sounds like mighty good news to me! I am down to 5 mg of prednisone and I feel so good! I think you will too as your dose is lowered. I don't feel as sick and I don't feel so depressed. I lowered my doses by 5 but went down every other week. First drop was the worst but these past two drops haven't been bad. God bless you-jaime wrote: i saw my new pulm today. she is one who is recommended by the PFF..she also has a reputation for being one of the best pulms in the houston area. upon reviewing my old and new cat scan film side by side, the biopsy report, blood work, etc....she says there is absolutely no way i have pulmonary fibrosis. is this good? yes and no. i however do have a severe case of eosinophilic granuloma aka langerhan's which is what barb in ky also has. this too is incurable and there are no known meds to treat with. at this point the actimmune injections are being stopped. the prednisone i am being weaned off of 5mg at a time each week until it is gone. i was told however that i should have been on bactim since the day prednisone was started because of the fact that prednisone destroys your immune system and the body has no way of fighting off infections. so now i am being put on bactim every other day until 30 days after my last dose of prednisone.

i am also being referred to the transplant team at baylor to undergo transplant evaluation.( of course they have to get insurance approval for all evaluation procedures before they will schedule anything and i was told to expect 10 days of rigorous testing) YIKES! good news. life expectancy has just gone from 2 yrs to 13 but i still need my O2 upon physical exertion and for sleeping. i had my first 6 minute walk test today and with the O2 at 2 liters at the end of the 6 minutes my stats were 84.....not so good and the machine kept clicking off because the battery was low so the tech really couldn't tell how much my stats had dropped until she plugged it in and printed out the report. DUH! batteries aren't that expensive! especially if ya get the rechargable kind! 4 dr's and 4 different opinions....which one am i supposed to take to heart. also my biopsy slides are going to

be stained AGAIN for conclusive diagnosis. this is all the news i have for now. dx? who the heck nows these days lol __________________________________________________

[Guest guest]

Hi

If this is the correct dx it sounds great compared to the old one.

Sounds like you finally found a doc who is up on pulmonary issues and

on staff at a well known hospital.

I felt frustrated listening to you talk about your former doc and

wished you would change docs. Glad you are going for transplant

eval. Mine was a 3 day outpatient eval. My first 6 minute walk was

when I went for the rehab consult.

Joyce ipf 3/06

>

> i saw my new pulm today. she is one who is recommended by the

> PFF..she also has a reputation for being one of the best pulms in

> the houston area.

>

> upon reviewing my old and new cat scan film side by side, the

biopsy

> report, blood work, etc....she says there is absolutely no way i

> have pulmonary fibrosis.

>

> is this good? yes and no. i however do have a severe case of

> eosinophilic granuloma aka langerhan's which is what barb in ky

also

> has. this too is incurable and there are no known meds to treat

with.

>

> at this point the actimmune injections are being stopped. the

> prednisone i am being weaned off of 5mg at a time each week until

it

> is gone. i was told however that i should have been on bactim since

> the day prednisone was started because of the fact that prednisone

> destroys your immune system and the body has no way of fighting off

> infections. so now i am being put on bactim every other day until

30

> days after my last dose of prednisone.

>

> i am also being referred to the transplant team at baylor to

undergo

> transplant evaluation.( of course they have to get insurance

> approval for all evaluation procedures before they will schedule

> anything and i was told to expect 10 days of rigorous testing)

YIKES!

>

> good news. life expectancy has just gone from 2 yrs to 13 but i

> still need my O2 upon physical exertion and for sleeping. i had my

> first 6 minute walk test today and with the O2 at 2 liters at the

> end of the 6 minutes my stats were 84.....not so good and the

> machine kept clicking off because the battery was low so the tech

> really couldn't tell how much my stats had dropped until she

plugged

> it in and printed out the report. DUH! batteries aren't that

> expensive! especially if ya get the rechargable kind!

>

> 4 dr's and 4 different opinions....which one am i supposed to take

> to heart. also my biopsy slides are going to be stained AGAIN for

> conclusive diagnosis.

>

> this is all the news i have for now.

>

> dx? who the heck nows these days lol

>

[Guest guest]

Hi Joy

Are you able to go on medical assistance in your state? In PA,

medical assistance seems to cover a lot of stuff. Don't know about

it in relation to IPF. But it's worth looking into.

Joyce IPF 3/06

> i saw my new pulm today. she is one who is recommended by the

> PFF..she also has a reputation for being one of the best pulms in

> the houston area.

>

> upon reviewing my old and new cat scan film side by side, the

biopsy

> report, blood work, etc....she says there is absolutely no way i

> have pulmonary fibrosis.

>

> is this good? yes and no. i however do have a severe case of

> eosinophilic granuloma aka langerhan's which is what barb in ky

also

> has. this too is incurable and there are no known meds to treat

with.

>

> at this point the actimmune injections are being stopped. the

> prednisone i am being weaned off of 5mg at a time each week until

it

> is gone. i was told however that i should have been on bactim since

> the day prednisone was started because of the fact that prednisone

> destroys your immune system and the body has no way of fighting off

> infections. so now i am being put on bactim every other day until

30

> days after my last dose of prednisone.

>

> i am also being referred to the transplant team at baylor to

undergo

> transplant evaluation.( of course they have to get insurance

> approval for all evaluation procedures before they will schedule

> anything and i was told to expect 10 days of rigorous testing)

YIKES!

>

> good news. life expectancy has just gone from 2 yrs to 13 but i

> still need my O2 upon physical exertion and for sleeping. i had my

> first 6 minute walk test today and with the O2 at 2 liters at the

> end of the 6 minutes my stats were 84.....not so good and the

> machine kept clicking off because the battery was low so the tech

> really couldn't tell how much my stats had dropped until she

plugged

> it in and printed out the report. DUH! batteries aren't that

> expensive! especially if ya get the rechargable kind!

>

> 4 dr's and 4 different opinions....which one am i supposed to take

> to heart. also my biopsy slides are going to be stained AGAIN for

> conclusive diagnosis.

>

> this is all the news i have for now.

>

> dx? who the heck nows these days lol

>

>

>

>

>

>

> Live one day at a time.

> It's a gift to each of us. We need

> to use each day with care.

> Joy

>

>

>

>

> ---------------------------------

> Stay in the know. Pulse on the new Yahoo.com. Check it out.

>

>

>

>

> Live one day at a time.

> It's a gift to each of us. We need

> to use each day with care.

> Joy

>

[Guest guest]

Hi Joy

I fear " dying " a lot more than " death " . The pain and suffering are

very, very scary to me. I have felt this way for many years--way

before this illness.

Joyce ipf 3/06

> i saw my new pulm today. she is one who is recommended by the

> PFF..she also has a reputation for being one of the best pulms in

> the houston area.

>

> upon reviewing my old and new cat scan film side by side, the

biopsy

> report, blood work, etc....she says there is absolutely no way i

> have pulmonary fibrosis.

>

> is this good? yes and no. i however do have a severe case of

> eosinophilic granuloma aka langerhan's which is what barb in ky

also

> has. this too is incurable and there are no known meds to treat

with.

>

> at this point the actimmune injections are being stopped. the

> prednisone i am being weaned off of 5mg at a time each week until

it

> is gone. i was told however that i should have been on bactim since

> the day prednisone was started because of the fact that prednisone

> destroys your immune system and the body has no way of fighting off

> infections. so now i am being put on bactim every other day until

30

> days after my last dose of prednisone.

>

> i am also being referred to the transplant team at baylor to

undergo

> transplant evaluation.( of course they have to get insurance

> approval for all evaluation procedures before they will schedule

> anything and i was told to expect 10 days of rigorous testing)

YIKES!

>

> good news. life expectancy has just gone from 2 yrs to 13 but i

> still need my O2 upon physical exertion and for sleeping. i had my

> first 6 minute walk test today and with the O2 at 2 liters at the

> end of the 6 minutes my stats were 84.....not so good and the

> machine kept clicking off because the battery was low so the tech

> really couldn't tell how much my stats had dropped until she

plugged

> it in and printed out the report. DUH! batteries aren't that

> expensive! especially if ya get the rechargable kind!

>

> 4 dr's and 4 different opinions....which one am i supposed to take

> to heart. also my biopsy slides are going to be stained AGAIN for

> conclusive diagnosis.

>

> this is all the news i have for now.

>

> dx? who the heck nows these days lol

>

>

>

>

>

>

> Live one day at a time.

> It's a gift to each of us. We need

> to use each day with care.

> Joy

>

>

>

>

> ---------------------------------

> Stay in the know. Pulse on the new Yahoo.com. Check it out.

>

>

>

>

>

>

> Live one day at a time.

> It's a gift to each of us. We need

> to use each day with care.

> Joy

>

>

>

>

>

>

> Joy

> (IPF 3/06)

> Today is a gift for each

> of us. Enjoy it.

>

[Guest guest]

Grey Thank you for your email. I feel the same as you. I weaned myself off Pred. Thought I gave it enough time, but now I wonder...as I have some aches and pains in my joints on my right side How are you doing? It's been 1 year since you were diagnosed. I know I've had this disease for over a year now. I feel pretty good. But, love to sleep...is that part of it? Friend Joy Hello Joy, I sort of feel like

you, I don't want pain but we are going to have some down the road as this stuff progresses. I had some bad pain several months ago as I weaned myself off of predisone. Did not see a doctor about it but it was real severe. Chest pain that raidated down my arms and legs. Took pain pills from a former procedure to get me thru whatever was going on. Joy, all I can say is expect the unexpected. My wife is a nurse and I hope she will help me when I get bad. I'm doing good now and we have our little dog molly. She is so precious. Joy, there is no way out of this. Take your meds and see your doctors and last as long as you can. Your friend Grey IPF 10/05 Re: good news/bad news you be the judge........ Hi ..YEs, I know about Dr. Raghu. My doc is from the same hospital..University of Washington. My problem is money. I don't have insurance. U of W has a "charity program"....it takes forever and lots of questions..To visit him it cost's $150 up front. Thank you so much. Hope you are doing well with all the comfusion.....Joy ipr 3/06glo caskey <glocaskey> wrote: Hi Joy, There is a Dr.named Ganesh Raghu at the U of Washington. I know nothing about him personally except that I know he has written research articles about our disease. I was told by

someone with our disease that he was "among the best" I am in the Chicago area where we have good Drs. so haven't contacted him. I know nothing about his bedside manner or availability. You can go on Google and find his location, how to contact him etc. (I just did it by putting in his name) it must be frustrating for you, but maybe it will turn out to be really good news. I think it is frustrating for the Drs., too, because there is so much they don't know about this disease. glocaskeyJoy Kiefner <joynoel3208> wrote: Hi, ....You must be frustrated by this news. I've been thinking about seeing another Pulm. here in Seattle. Does anyone know of a good pulm here? I am currently

seeing Dr. Pearson at Harbor View. Thanks, Joy jaime <laddergalhotmail> wrote: i saw my new pulm today. she is one who is recommended by the PFF..she also has a reputation for being one of the best pulms in the houston area.upon reviewing my old and new cat scan film side by side, the biopsy report, blood work, etc....she says there is absolutely no way i have pulmonary fibrosis.is this good? yes and no. i however do have a severe case of eosinophilic granuloma aka langerhan's which is what barb in ky also has. this too is incurable and there are no known meds to treat with.at this point the actimmune injections are being stopped. the prednisone i am being weaned off of 5mg at a time each week until it is

gone. i was told however that i should have been on bactim since the day prednisone was started because of the fact that prednisone destroys your immune system and the body has no way of fighting off infections. so now i am being put on bactim every other day until 30 days after my last dose of prednisone.i am also being referred to the transplant team at baylor to undergo transplant evaluation.( of course they have to get insurance approval for all evaluation procedures before they will schedule anything and i was told to expect 10 days of rigorous testing) YIKES!good news. life expectancy has just gone from 2 yrs to 13 but i still need my O2 upon physical exertion and for sleeping. i had my first 6 minute walk test today and with the O2 at 2 liters at the end of the 6 minutes my stats were 84.....not so good and the machine kept clicking off because the battery was low so the tech really couldn't tell how

much my stats had dropped until she plugged it in and printed out the report. DUH! batteries aren't that expensive! especially if ya get the rechargable kind!4 dr's and 4 different opinions....which one am i supposed to take to heart. also my biopsy slides are going to be stained AGAIN for conclusive diagnosis.this is all the news i have for now. dx? who the heck nows these days lol Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy Stay in the know. Pulse on the new Yahoo.com. Check it out. Live one day at a time. It's a gift to each of us. We need to use each day with care. Joy Joy (IPF 3/06) Today is a gift for each of us. Enjoy it. Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

[Guest guest]

Yes, I agree. I have not heard much about the end times....I guess you don't just stop breathing...other parts of our body breakdown too. I am too new at this disease to know much, I guess. Joy ipf3/06Joyce wrote: Hi JoyI fear "dying" a lot more than "death". The pain and suffering are very, very scary to me. I have felt this way for many years--way before this illness.Joyce ipf 3/06> i saw my new pulm today. she is one who is recommended by the > PFF..she also has a reputation for being one of

the best pulms in > the houston area.> > upon reviewing my old and new cat scan film side by side, the biopsy > report, blood work, etc....she says there is absolutely no way i > have pulmonary fibrosis.> > is this good? yes and no. i however do have a severe case of > eosinophilic granuloma aka langerhan's which is what barb in ky also > has. this too is incurable and there are no known meds to treat with.> > at this point the actimmune injections are being stopped. the > prednisone i am being weaned off of 5mg at a time each week until it > is gone. i was told however that i should have been on bactim since > the day prednisone was started because of the fact that prednisone > destroys your immune system and the body has no way of fighting off > infections. so now i am being put on bactim every other day until 30 > days after my last

dose of prednisone.> > i am also being referred to the transplant team at baylor to undergo > transplant evaluation.( of course they have to get insurance > approval for all evaluation procedures before they will schedule > anything and i was told to expect 10 days of rigorous testing) YIKES!> > good news. life expectancy has just gone from 2 yrs to 13 but i > still need my O2 upon physical exertion and for sleeping. i had my > first 6 minute walk test today and with the O2 at 2 liters at the > end of the 6 minutes my stats were 84.....not so good and the > machine kept clicking off because the battery was low so the tech > really couldn't tell how much my stats had dropped until she plugged > it in and printed out the report. DUH! batteries aren't that > expensive! especially if ya get the rechargable kind!> > 4 dr's and 4 different

opinions....which one am i supposed to take > to heart. also my biopsy slides are going to be stained AGAIN for > conclusive diagnosis.> > this is all the news i have for now.> > dx? who the heck nows these days lol> > > > > > > Live one day at a time. > It's a gift to each of us. We need > to use each day with care. > Joy > > > > > ---------------------------------> Stay in the know. Pulse on the new Yahoo.com. Check it out. > > > > > > > Live one day at a time. > It's a gift to each of us. We need > to use each day with care. > Joy > > > > > > > Joy > (IPF 3/06)> Today is a gift for each> of us. Enjoy

it.>Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.

[Guest guest]

Hi Joyce. Around here it's called DSHS...and so far I've avoided it! I work enuf hours to pay the rent...my husband sells on ebay...but, there is nothing left for insurance. The clinic I go to is on a sliding fee scale. Harbor View hospital also has that type of plan....Dr Raghu at the Univ of WA charges $150 min. at each visit. Guess I won't be seeing him! Joy ipf3/06 (the same as you)Joyce wrote: Hi JoyAre you able to go on medical assistance

in your state? In PA, medical assistance seems to cover a lot of stuff. Don't know about it in relation to IPF. But it's worth looking into.Joyce IPF 3/06> i saw my new pulm today. she is one

who is recommended by the > PFF..she also has a reputation for being one of the best pulms in > the houston area.> > upon reviewing my old and new cat scan film side by side, the biopsy > report, blood work, etc....she says there is absolutely no way i > have pulmonary fibrosis.> > is this good? yes and no. i however do have a severe case of > eosinophilic granuloma aka langerhan's which is what barb in ky also > has. this too is incurable and there are no known meds to treat with.> > at this point the actimmune injections are being stopped. the > prednisone i am being weaned off of 5mg at a time each week until it > is gone. i was told however that i should have been on bactim since > the day prednisone was started because of the fact that prednisone > destroys your immune system and the body has no way of fighting off > infections. so now

i am being put on bactim every other day until 30 > days after my last dose of prednisone.> > i am also being referred to the transplant team at baylor to undergo > transplant evaluation.( of course they have to get insurance > approval for all evaluation procedures before they will schedule > anything and i was told to expect 10 days of rigorous testing) YIKES!> > good news. life expectancy has just gone from 2 yrs to 13 but i > still need my O2 upon physical exertion and for sleeping. i had my > first 6 minute walk test today and with the O2 at 2 liters at the > end of the 6 minutes my stats were 84.....not so good and the > machine kept clicking off because the battery was low so the tech > really couldn't tell how much my stats had dropped until she plugged > it in and printed out the report. DUH! batteries aren't that > expensive! especially if ya

get the rechargable kind!> > 4 dr's and 4 different opinions....which one am i supposed to take > to heart. also my biopsy slides are going to be stained AGAIN for > conclusive diagnosis.> > this is all the news i have for now.> > dx? who the heck nows these days lol> > > > > > > Live one day at a time. > It's a gift to each of us. We need > to use each day with care. > Joy > > > > > ---------------------------------> Stay in the know. Pulse on the new Yahoo.com. Check it out. > > > > > Live one day at a time. > It's a gift to each of us. We need > to use each day with care. > Joy>Joy (IPF 3/06) Today is a gift for each of us. Enjoy it.