Re: New diagnosis

[Guest guest]

Hi, : I am sorry to hear that you have PF. Mine also showed up on x-ray and then on ct scan. Then it was suggested I have a lung biopsy. I did. It was called a VAT. I had three incisions, one for a camera, one for the scissors and one for the drain tube. I had an awful time of it. I spent five days in the hospital, four of which were in ICU. It was several months before I could lay on my right side (the side he cut on). There is no treatment for this disease, however they are starting to do research, they only started researching this disease five years ago, I guess because it is a rare disease, but is starting to become more prevalent. There is plenty of interesting information at pulmonaryfibrosis.org and you can type in pulmonary fibrosis in your web browser and find out about clinical studies that are going on. I guess we are all in the same boat. We just try to cheer one another up

and share information that we gather. Where do you live? You need to ask your Dr. to put you in touch with a lung transplant hospital and get your name on the list, if you would like this option. The sooner the better. Some people in this group have lived eight years or longer. This disease is different in everyone. Are you on oxygen yet? If so, how many Liters? I was on oxygen before I got the biopsy. That is why I had the biopsy done so that I would know for sure what was going on. I need to get a second opinion and I would suggest that you do the same. You also need to ask your pulmonary dr. to get you into pulmonary rehab to teach you how to strengthen your lungs and how to breathe better. I need to do that also. There are some great people in this group. I hope you will feel comfortable here. Got questions, just ask. That is what I do. I hope I have helped you

some. I am sure there will be others who will write back to you. Maybe with better advice than I have given you. You take care, quit worrying about what you have no control over, take care of your health, and enjoy your life. Barbdnsrndl wrote: A lung xray and subsequent ct scan revealed I have advanced pulmomaryfibrosis. My doctor told me he was sorry and that I should go homeand read about it( I did and its pretty scary!). He wants to do anopen lung biopsy in a week and I feel like everything is moving toofast. Plus I am not sure if there is a benefit to biopsy after readingsome of your posts. I don't know where to start getting info. Pleasehelp-

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

: I was diagnosed with advanced IPF last July. I know how fast train is moving. I just wanted to get off at the next stop. This group has helped me more that I can tell them. Dr. to call 3 weeks ago if biopsy needed. No call. I go back on May 3, I thank God every day for this group. Each and every one in group will have you in their prayers, helps alot. Sometimes fear is good, makes us aware and we become more informed everyday I will always be just an e-mail away. Mya God Watch Over You cdnsrndl wrote: A lung xray and subsequent ct scan revealed I have advanced pulmomaryfibrosis. My doctor told me he was sorry and that I should go homeand read about it( I did and its pretty scary!). He wants to do anopen lung biopsy

in a week and I feel like everything is moving toofast. Plus I am not sure if there is a benefit to biopsy after readingsome of your posts. I don't know where to start getting info. Pleasehelp-

Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice.

[Guest guest]

Hi ,

Thanks for writing. I hope that you will continue with us to learn and help us learn more. I had lung biopsy quickly after seeing the pulmonologist. I had a difficult time, but there was some filmy scarring on the pleura that was removed. It had been causing extrordinary pain for a few years. Some patients and doctors do not believe in the necessity of biopsy. But, up until then there had been a lot of guessing by doctors and mistreatment. I am glad that I had it done, in spite of the long hospital stay and pain involved.

There are different forms of biopsy, as we have been discussing recently. I had the most invasive kind, but they were able to go into all areas of the lungs and to rule out cancer and remove lymph nodes, etc. I have survived eight years due to diagnosis and treatment.

You are the one to manage your disease and your treatment. Even though you probably feel terrible and have no energy...try to read up and decide for yourself. If your doc will not answer questions and help you make good decisions...get another doctor. I just did not know how to ask the right questions at the time. All I could think of was that I wanted to breathe and I wanted the pain to stop!

I will pray for your good treatment. The more you know, the better you can help make good choices and cope with the information that you are getting. We will help you as much as we can. You will see differences in opinions here, but we all have that right. I have learned much from those opinions.

Hugs and prayers,

Joyce >> A lung xray and subsequent ct scan revealed I have advanced pulmomary> fibrosis. My doctor told me he was sorry and that I should go home> and read about it( I did and its pretty scary!). He wants to do an> open lung biopsy in a week and I feel like everything is moving too> fast. Plus I am not sure if there is a benefit to biopsy after reading> some of your posts. I don't know where to start getting info. Please> help->

[Guest guest]

, I don't know if this is right but I think the doctors need some physical evidence to get the ins co's to pay them for your visits. Grey PS I had a broncoscope. I probably didn't spell it right. That was not too bad. Good luck

New diagnosis

A lung xray and subsequent ct scan revealed I have advanced pulmomaryfibrosis. My doctor told me he was sorry and that I should go homeand read about it( I did and its pretty scary!). He wants to do anopen lung biopsy in a week and I feel like everything is moving toofast. Plus I am not sure if there is a benefit to biopsy after readingsome of your posts. I don't know where to start getting info. Pleasehelp-

[Guest guest]

Thank you Barb. I live in California and I am not on oxygen. I asked my doctor about it and he said that he didn't want me to become too dependent tpp arly. I think I need to change doctors. Barbara Soice wrote: Hi, : I am sorry to hear that you have PF. Mine also showed up on x-ray and then on ct scan. Then it was suggested I have a lung biopsy. I did. It was called a VAT. I had three incisions, one for a camera, one for the scissors and one for the drain tube. I had an awful time of it. I spent five days in the hospital, four of which were in ICU. It was several months before I could lay on my right side (the side he cut on). There is no treatment for this disease, however they are starting

to do research, they only started researching this disease five years ago, I guess because it is a rare disease, but is starting to become more prevalent. There is plenty of interesting information at pulmonaryfibrosis.org and you can type in pulmonary fibrosis in your web browser and find out about clinical studies that are going on. I guess we are all in the same boat. We just try to cheer one another up and share information that we gather. Where do you live? You need to ask your Dr. to put you in touch with a lung transplant hospital and get your name on the list, if you would like this option. The sooner the better. Some people in this group have lived eight years or longer. This disease is different in everyone. Are you on oxygen yet? If so, how many Liters? I was on oxygen before I got the biopsy. That is why I had the biopsy done so that I would know for sure what was going

on. I need to get a second opinion and I would suggest that you do the same. You also need to ask your pulmonary dr. to get you into pulmonary rehab to teach you how to strengthen your lungs and how to breathe better. I need to do that also. There are some great people in this group. I hope you will feel comfortable here. Got questions, just ask. That is what I do. I hope I have helped you some. I am sure there will be others who will write back to you. Maybe with better advice than I have given you. You take care, quit worrying about what you have no control over, take care of your health, and enjoy your life. Barbdnsrndl wrote: A lung xray and subsequent ct scan revealed I have advanced

pulmomaryfibrosis. My doctor told me he was sorry and that I should go homeand read about it( I did and its pretty scary!). He wants to do anopen lung biopsy in a week and I feel like everything is moving toofast. Plus I am not sure if there is a benefit to biopsy after readingsome of your posts. I don't know where to start getting info. Pleasehelp- How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

: If I were you, I would change Dr's too. I mean either you need oxygen or you don't. I don't understand him saying he didn't want you to become too dependent on it too early. I think it quite clearly a do need or a don't need thing. I hope your feeling better today. Keep us posted. Barb in KYdenise randel wrote: Thank you Barb. I live in California and I am not on oxygen. I asked my doctor about it and he said that he didn't want me to become too dependent tpp arly. I think I need to change doctors. Barbara Soice wrote: Hi, : I am

sorry to hear that you have PF. Mine also showed up on x-ray and then on ct scan. Then it was suggested I have a lung biopsy. I did. It was called a VAT. I had three incisions, one for a camera, one for the scissors and one for the drain tube. I had an awful time of it. I spent five days in the hospital, four of which were in ICU. It was several months before I could lay on my right side (the side he cut on). There is no treatment for this disease, however they are starting to do research, they only started researching this disease five years ago, I guess because it is a rare disease, but is starting to become more prevalent. There is plenty of interesting information at pulmonaryfibrosis.org and you can type in pulmonary fibrosis in your web browser and find out about clinical studies that are going on. I guess we are all in the same boat. We just try to cheer one another up and share information that

we gather. Where do you live? You need to ask your Dr. to put you in touch with a lung transplant hospital and get your name on the list, if you would like this option. The sooner the better. Some people in this group have lived eight years or longer. This disease is different in everyone. Are you on oxygen yet? If so, how many Liters? I was on oxygen before I got the biopsy. That is why I had the biopsy done so that I would know for sure what was going on. I need to get a second opinion and I would suggest that you do the same. You also need to ask your pulmonary dr. to get you into pulmonary rehab to teach you how to strengthen your lungs and how to breathe better. I need to do that also. There are some great people in this group. I hope you will feel comfortable here. Got questions, just ask. That is what I do. I hope I have helped you some. I am sure there will

be others who will write back to you. Maybe with better advice than I have given you. You take care, quit worrying about what you have no control over, take care of your health, and enjoy your life. Barbdnsrndl wrote: A lung xray and subsequent ct scan revealed I have advanced pulmomaryfibrosis. My doctor told me he was sorry and that I should go homeand read about it( I did and its pretty scary!). He wants to do anopen lung biopsy in a week and I feel like everything is moving toofast. Plus I am not sure if there is a benefit to biopsy after readingsome of your posts. I don't know where to start getting info. Pleasehelp- How low will we go? Check out

Yahoo! Messenger’s low PC-to-Phone call rates. Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

Blab-away for as little as 1¢/min. Make PC-to-Phone Calls using Yahoo! Messenger with Voice.

[Guest guest]

Be SURE to question the steroids.. I gained 70 lbs and still am as bad as ever. Go to the PF Foundation home page and read up on prednisone. The side effects are a true nightmare. God Bless Peggy

...just a note...prednisone affects each one differently. I have been on it since '04 and have had NO difficulties. It's best to hear both the 'pros and the cons' regarding prednisone.

kiss kiss,

~Ginger~

[Guest guest]

- this is one of the stupidest things I've ever heard!! He doesn't want you to become too dependent early??? We are ALL dependent on oxygen....every being on the planet is!!!! I would run....not walk...to another physician! Honey, you deserve much better.

--Diane Quinlan dianequinlan@...

denise randel wrote:

Thank you Barb. I live in California and I am not on oxygen. I asked my doctor about it and he said that he didn't want me to become too dependent tpp arly. I think I need to change doctors.