Re: Afraid

[Guest guest]

I understand how afraid you are and I wish I could help you with your fear but, alas, I cannot. I will tell y ou that I went to see a surgeon to get a biopsy and he said that it is easy. He explained how it is done and he said I would be in the hospital for 1 day and released the next and there would be a few weeks of discomfort but he would supply pain meds. Of course I am in excellent health besides my lungs and I have an excellent surgeon picked by National Jewish. I am so sorry you are going thru this. So sorry. I do understand your fear but I can't help y ou there. I can say to you that when my husband was murdered, the next day I was walking down the hallway with his mother and I heard him as though he were a long way away and he was yelling. He was saying "Joyce, Joyce, I'm here! I'm Here!" If I were going to hallucinate that sure wouldn't be what it would be so I am convinced we survive after death because I heard my husband call out to me. I don't think he realized that he was dead. Stuart gave me a wonderful gift calling out because now I know for sure that we survive death. Peace be with you. Joyce Rudy AZ

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

I had broncoscopy last year and nothing to it. They give you an anesthetic and I recall nothing. No pain no side effects.Piece of cake. I dont have aids but I dont see what difference that would make re this procedure. Good luck and try to be positive.

Andy

Subject: AfraidTo: Breathe-Support Date: Wednesday, April 29, 2009, 10:53 AM

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that

he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

I had broncoscopy last year and nothing to it. They give you an anesthetic and I recall nothing. No pain no side effects.Piece of cake. I dont have aids but I dont see what difference that would make re this procedure. Good luck and try to be positive.

Andy

Subject: AfraidTo: Breathe-Support Date: Wednesday, April 29, 2009, 10:53 AM

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that

he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

: I am so very sorry that you are going through this, and sadder still that I can't "fix" your medical issues. Nor do I feel qualified to offer any suggestions about what you should do. I can say that all here have felt fear about our life and death. The way I get through it is faith. You say you have no faith, and yet the mere fact that you bring it up suggests that perhaps you do. Whether or not that faith is strong, just ask God to be with you - He is, and He will be. I know that sounds simplistic, and it probably is. But it worked for me, and I believe it can for you too. And as the Bible says "If God is with me, who can be against me?"

Anyway - hope that this writing is not offensive. Just trying to help in some way.

God bless,

B

Barbara McD

IPF, Sept 08

Beautiful 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

To: Breathe-Support Sent: Wednesday, April 29, 2009 10:53:13 AMSubject: Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he

may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

,

There are lots of folks on this site that have helped me tremendously and can tell you more than me but here is my 2 cents: I just had the bronchoscope and other than coughing I felt no pain at all. That is also when they took my biopsy from both lungs. They gave me what they called twilight sleep but I call LaLa land. I came out after the procedure and was up and about very quickly. There were no after affects. I am on prednisone for lupus and Sjogrens and arthritis. I have been for 3-4 years. It also makes me diabetic or so I think because I was not before they had had be on the steroids for a few months. Some have side effects from the pred but as far as I know (and I don't know much but I'm learning) that is the only side effect I have experienced except weight gain the first year. You said you are afraid to tell you partner well look at the word "Partner". Doesn't that mean you are in everything together? You sound like a sweetheart and I can't imagine your partner being anything but supportive. Talk to your partner! I made the mistake for too long of holding everything in and not talking to my love and it just made me an irritable, unhappy person. My hubby was relieved when I finally let go and yelled and cried it all out. Today, mostly thanks to some folks on this site, we are closer than ever. On this site you will learn a lot. I have and it's not just medical stuff. I am learning to speak up for myself and be my own advocate. Don't hesitate to call your doctor's nurse and have her explain again to you anything the doctor said that you don't understand. You deserve to be as happy as possible in your present circumstances. You are scared so here, this is for you - HUGS! God Bless you and my prayers are with both of you.

Sunny, PF 09, Journal of Diseases since 04 LOL, Idaho

From: johnj6992

Sent: Wednesday, April 29, 2009 7:53 AM

To: Breathe-Support

Subject: Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

,I am so sorry about your progression and hope there will be something discovered by bronc that will help in getting you stable.  I had a bronc last year at which time they pulled enough lung tissue for my biopsy.  If this is what they intend for you, it is a cakewalk.  The last thing I remembered was the doc asking me if I was ready and telling him "hell no" I haven't had any drugs yet!  LIGHTS OUT......Good luck and remember we all understand..Roxanne, 59, South Carolina

2006 Asthma/ PF

2008 IPF/ Sarcoidosis/Gerd

Lady Slipper Orchid

From: johnj6992 <johnj6992 (AT) yahoo (DOT) com>Subject: AfraidTo: Breathe-Support@ yahoogroups. comDate: Wednesday, April 29, 2009, 10:53 AM

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that

he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

,

Don't be afraid , like Joyce when my wonderful husband died last

year, I heard him several times in the following days. I can only wait

to be reunited with him. You may not believe in God but He believes in

you. Email me if you want to talk more.

Dyane Phoenix IPF 02

>

> I've had Interstitial Pulmonary Fibrosis since March 2005. I've been

on oxygen 24/7 for awhile. I haven't been feeling well and find myself

doing less and less.

>

> I went for extensive blood work last month and haven't heard the

results. But, I knew I have another doctor's appointment in a few weeks.

I went for Pulmonary Function testing the other day and saw the doctor

afterwards. I was nervous as to the results. The doctor told my partner

& me that the disease has " progressed significantly " .

>

> He also said that there was an abnormality in one of the blood tests.

I was so upset, that I don't remember what he was saying.

>

> I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also

mentioned doing a lung biopsy. I don't know if he meant while doing the

broncoscopy, or at a later time. If he meant later, I don't think I'll

have it done. I've read postings about what people have gone through.

>

> He also said that he may prescribe Prednisone with insulin. Prednisone

makes me a diabetic. I don't know if it's worth taking one medication

with side effects and having to take another to counter them. I have

HIV/AIDS and have been through it before.

>

> I'm very depressed at the moment. I feel like I'm unable to tell my

partner. I guess I shouldn't feel this way, because I've read how others

have it worse than me. The doctor told me, awhile ago, to eat more. I

have no appetite, but I try. My partner asked me yesterday, if I'm ready

to die.

>

> I afraid to die. I guess it's because I don't have faith. I've tried

to find something, but I can't. I know we're all going to die at some

time. But, I'm so scared.

>

> Well, thanks for letting me say what's on my mind. I hope someone can

understand.

>

[Guest guest]

Hi .... I hope by now you have the results on the blood work. If not, by all means, call and request them!

I think it's good to take someone with you to dr. so THEY can remember what you may forget.

A lung bio is not done 'on the spot'...get all the info first. Maybe the bronc will give enough info. Everyone does not opt for a lung bio . I for one do not.

Of course you're depressed...all this medical on your shoulders and not talking to your partner. How would he feel if he knew you are feeling like you can't talk to him? I seem to remember you two have been together a number of years...if you are the same that I exchanged private emails with.

You may not think you have faith, however do you have a church where you could go talk to someone?

I'll bet you have more down inside of you then you think. Take some quiet time and search yourself for what your beliefs are in dying.

What are you scared of ? Dying alone, pain? (there is always hospice).

Try to identify 'what' you are scared of and then it's easier to think about and deal with.

Unless something is very wrong between you/partner...talk to him, or a friend, or a family member. Or doggone it, email me and we'll talk. You are not alone if you don't allow yourself to isolate.

Lots to do...gather all medical info, identify the 'abnormality' in one of the blood tests. Some of it is no doubt the AIDS virus.... make decision about prednisone.

Keep on keepin' ...God Bless you.

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Hi .... I hope by now you have the results on the blood work. If not, by all means, call and request them!

I think it's good to take someone with you to dr. so THEY can remember what you may forget.

A lung bio is not done 'on the spot'...get all the info first. Maybe the bronc will give enough info. Everyone does not opt for a lung bio . I for one do not.

Of course you're depressed...all this medical on your shoulders and not talking to your partner. How would he feel if he knew you are feeling like you can't talk to him? I seem to remember you two have been together a number of years...if you are the same that I exchanged private emails with.

You may not think you have faith, however do you have a church where you could go talk to someone?

I'll bet you have more down inside of you then you think. Take some quiet time and search yourself for what your beliefs are in dying.

What are you scared of ? Dying alone, pain? (there is always hospice).

Try to identify 'what' you are scared of and then it's easier to think about and deal with.

Unless something is very wrong between you/partner...talk to him, or a friend, or a family member. Or doggone it, email me and we'll talk. You are not alone if you don't allow yourself to isolate.

Lots to do...gather all medical info, identify the 'abnormality' in one of the blood tests. Some of it is no doubt the AIDS virus.... make decision about prednisone.

Keep on keepin' ...God Bless you.

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Hi .... I hope by now you have the results on the blood work. If not, by all means, call and request them!

I think it's good to take someone with you to dr. so THEY can remember what you may forget.

A lung bio is not done 'on the spot'...get all the info first. Maybe the bronc will give enough info. Everyone does not opt for a lung bio . I for one do not.

Of course you're depressed...all this medical on your shoulders and not talking to your partner. How would he feel if he knew you are feeling like you can't talk to him? I seem to remember you two have been together a number of years...if you are the same that I exchanged private emails with.

You may not think you have faith, however do you have a church where you could go talk to someone?

I'll bet you have more down inside of you then you think. Take some quiet time and search yourself for what your beliefs are in dying.

What are you scared of ? Dying alone, pain? (there is always hospice).

Try to identify 'what' you are scared of and then it's easier to think about and deal with.

Unless something is very wrong between you/partner...talk to him, or a friend, or a family member. Or doggone it, email me and we'll talk. You are not alone if you don't allow yourself to isolate.

Lots to do...gather all medical info, identify the 'abnormality' in one of the blood tests. Some of it is no doubt the AIDS virus.... make decision about prednisone.

Keep on keepin' ...God Bless you.

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

,

I'm so sorry that you are going through such a difficult time. This disease is just an unrelenting horror show. You need to have someone you can speak with openly about all that you are coping with. This is not the time to keep it all inside.

Make a list of questions to ask your doctor and make sure you understand his answers. Is there someone who can be with you at appointments? Someone to listen with you and perhaps take notes?

I wish there was something I could do to help. You are not alone, we're all here with you and we stand together! You are in my thoughts and prayers.

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Wednesday, April 29, 2009 10:53:13 AMSubject: Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he

may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

, I think it best to be open with your partner. He is more likely your best support. The more he

understands, the better he can help and comfort you. There's nothing wrong about being afraid to die, but I believe talking about it, particularly with some one you love and who loves you, eases the pain somewhat.

And you are free to write to this group your feeling, your concerns, or just plain bitching. We are all in

the same boat and we understand.

I have gotten so much love and kindness from the people on this board that I find myself in a large extended family - a family that always has it arms around your shoulders and a shoulder that you can lean on. Jack79/IPF - UIP/dx06/05 Maine

To: Breathe-Support Sent: Wednesday, April 29, 2009 10:53:13 AMSubject: Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he

may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Sunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can.

I have a big mouth to match the big heart Sunny and I seldom mince words.

Your last few posts are sounding much more upbeat.

How are you doing now with food/eating?

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Sunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can.

I have a big mouth to match the big heart Sunny and I seldom mince words.

Your last few posts are sounding much more upbeat.

How are you doing now with food/eating?

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

john

i'm not real great with the emotional support

but this is the place to vent

as for practical support, it would be a good idea to carry a notebook with you to doc appts and either take the notes yourself or have your partner take the notes

the appointments can be too overwhelming and too emotional to remember the details

your partner may already sense that you are depressed, don't know you well enough to say whether or not it would be good for you to open up to him

sometimes i write in a journal when I get very upset/depressed/angry/etc,

it helps to get my thoughts off my mind, clears the air and helps me move on

i used to go window shopping, i should start doing that more frequently

i stay in the house by myself too, too, much

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: AfraidTo: Breathe-Support Date: Wednesday, April 29, 2009, 10:53 AM

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that

he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

john

i'm not real great with the emotional support

but this is the place to vent

as for practical support, it would be a good idea to carry a notebook with you to doc appts and either take the notes yourself or have your partner take the notes

the appointments can be too overwhelming and too emotional to remember the details

your partner may already sense that you are depressed, don't know you well enough to say whether or not it would be good for you to open up to him

sometimes i write in a journal when I get very upset/depressed/angry/etc,

it helps to get my thoughts off my mind, clears the air and helps me move on

i used to go window shopping, i should start doing that more frequently

i stay in the house by myself too, too, much

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: AfraidTo: Breathe-Support Date: Wednesday, April 29, 2009, 10:53 AM

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that

he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Sher,

Thank you for your kind words. I am still not eating much at all. I had a cup of brussell sprouts last night and spent 2 hours literally screaming in pain. It just isn't worth it to eat when it causes so much pain. I am trying to drink lots and lots of water because it hurts so bad when I go potty now. I figure another UTI. They aren't infrequent with me but antibiotics usually clears it up fairly quickly. Lupus has attacked me kidneys and done some damage in the past so it is not unexpected or worrisome to me. I am seeing the GI doc at 2:45 today. All morning I have been praying that first off he can figure out why it hurts so bad to eat and why other than at the hospital the other night I don't go poo. Second that he will refer me to a surgeon right away so they can stop the aspiration and my lungs won't be damaged any further. To be honest I am feeling more confident and more assertive. For the first time I feel like I can question the doctor and make him take time for me. After all don't we all make his house payments? You all have been so good for me I wish there were words to express the changes I am making JUST because of you and everyone else's care and straight talk. And besides all of the other good, I have dropped from 220 size 24W to 170 size 12 in just about 12 weeks. I am looking good and it means I get new clothes. Right now all of the weight seems to be coming off from the waist up. My backside still resembles a humvee going down the I90. Since I can't do hardly any exercise it makes it hard to work it off. I am still waiting, since Tuesday, for my oxygen. The called yesterday to ask what provider I wanted. I had no idea. We live in the boonies and I don't know who delivers here. Supposedly someone was suppose to call me today to get me set up but no word yet. And by the way: I love your big mouth so don't you dare change a whit.

Sunny

From: Sher Bauman

Sent: Wednesday, April 29, 2009 1:54 PM

To: Breathe-Support

Subject: Re: Afraid

Sunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can.

I have a big mouth to match the big heart Sunny and I seldom mince words.

Your last few posts are sounding much more upbeat.

How are you doing now with food/eating?

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Hi ,

I think we are all afraid to die and you are definitely not alone!! The people on this board are the best people in the world to have by your side to go through this disease process. My son is 22 and has just recently been diagnosed as being HIV positive and he is afraid of dying, too. Currently he is serving time in jail but is supposed to be released in about 4 months. Unfortunately, he has another charge coming up so he will be going back and we don't know for how long. I think his disease was sexually transmitted although I know he has done drugs before, but I don't think they have been IV drugs (but no, I am not sure). I have times when I don't feel like I can talk to anyone in my family about my illnesses or my son's because they don't understand because they aren't dealing with it on a daily basis. That is why I ABSOLUTELY LOVE this group!! No matter what's on your mind, wonderful

day, crappy day, depressed wanta die day, or any other kind of day, someone will ALWAYS listen!! I am here if you need me. I don't post as often as some of the others, but I do read all the posts. Sometimes I have good days and get on a roll and post all the time, and other days, I don't even want to get out of bed and just crawl in my "hideaway zone," which I know is not a good place to be, but sometimes I end up there without even realizing it and there is always someone here to bring me back and pick me back up!! Welcome, welcome, welcome!! You are not alone!! CaroOSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Thursday, April 30, 2009 3:47:58 PMSubject: Re: Afraid

Sher,

Thank you for your kind words. I am still not eating much at all. I had a cup of brussell sprouts last night and spent 2 hours literally screaming in pain. It just isn't worth it to eat when it causes so much pain. I am trying to drink lots and lots of water because it hurts so bad when I go potty now. I figure another UTI. They aren't infrequent with me but antibiotics usually clears it up fairly quickly. Lupus has attacked me kidneys and done some damage in the past so it is not unexpected or worrisome to me. I am seeing the GI doc at 2:45 today. All morning I have been praying that first off he can figure out why it hurts so bad to eat and why other than at the hospital the other night I don't go poo. Second that he will refer me to a surgeon right away so they can stop the aspiration and my lungs won't be damaged any further. To be honest I am feeling

more confident and more assertive. For the first time I feel like I can question the doctor and make him take time for me. After all don't we all make his house payments? You all have been so good for me I wish there were words to express the changes I am making JUST because of you and everyone else's care and straight talk. And besides all of the other good, I have dropped from 220 size 24W to 170 size 12 in just about 12 weeks. I am looking good and it means I get new clothes. Right now all of the weight seems to be coming off from the waist up. My backside still resembles a humvee going down the I90. Since I can't do hardly any exercise it makes it hard to work it off. I am still waiting, since Tuesday, for my oxygen. The called yesterday to ask what provider I wanted. I had no idea. We live in the boonies and I don't know who delivers here. Supposedly someone was suppose

to call me today to get me set up but no word yet. And by the way: I love your big mouth so don't you dare change a whit.

Sunny

From: Sher Bauman

Sent: Wednesday, April 29, 2009 1:54 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Afraid

Sunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can.

I have a big mouth to match the big heart Sunny and I seldom mince words.

Your last few posts are sounding much more upbeat.

How are you doing now with food/eating?

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he

may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Hi ,

I think we are all afraid to die and you are definitely not alone!! The people on this board are the best people in the world to have by your side to go through this disease process. My son is 22 and has just recently been diagnosed as being HIV positive and he is afraid of dying, too. Currently he is serving time in jail but is supposed to be released in about 4 months. Unfortunately, he has another charge coming up so he will be going back and we don't know for how long. I think his disease was sexually transmitted although I know he has done drugs before, but I don't think they have been IV drugs (but no, I am not sure). I have times when I don't feel like I can talk to anyone in my family about my illnesses or my son's because they don't understand because they aren't dealing with it on a daily basis. That is why I ABSOLUTELY LOVE this group!! No matter what's on your mind, wonderful

day, crappy day, depressed wanta die day, or any other kind of day, someone will ALWAYS listen!! I am here if you need me. I don't post as often as some of the others, but I do read all the posts. Sometimes I have good days and get on a roll and post all the time, and other days, I don't even want to get out of bed and just crawl in my "hideaway zone," which I know is not a good place to be, but sometimes I end up there without even realizing it and there is always someone here to bring me back and pick me back up!! Welcome, welcome, welcome!! You are not alone!! CaroOSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Thursday, April 30, 2009 3:47:58 PMSubject: Re: Afraid

Sher,

Thank you for your kind words. I am still not eating much at all. I had a cup of brussell sprouts last night and spent 2 hours literally screaming in pain. It just isn't worth it to eat when it causes so much pain. I am trying to drink lots and lots of water because it hurts so bad when I go potty now. I figure another UTI. They aren't infrequent with me but antibiotics usually clears it up fairly quickly. Lupus has attacked me kidneys and done some damage in the past so it is not unexpected or worrisome to me. I am seeing the GI doc at 2:45 today. All morning I have been praying that first off he can figure out why it hurts so bad to eat and why other than at the hospital the other night I don't go poo. Second that he will refer me to a surgeon right away so they can stop the aspiration and my lungs won't be damaged any further. To be honest I am feeling

more confident and more assertive. For the first time I feel like I can question the doctor and make him take time for me. After all don't we all make his house payments? You all have been so good for me I wish there were words to express the changes I am making JUST because of you and everyone else's care and straight talk. And besides all of the other good, I have dropped from 220 size 24W to 170 size 12 in just about 12 weeks. I am looking good and it means I get new clothes. Right now all of the weight seems to be coming off from the waist up. My backside still resembles a humvee going down the I90. Since I can't do hardly any exercise it makes it hard to work it off. I am still waiting, since Tuesday, for my oxygen. The called yesterday to ask what provider I wanted. I had no idea. We live in the boonies and I don't know who delivers here. Supposedly someone was suppose

to call me today to get me set up but no word yet. And by the way: I love your big mouth so don't you dare change a whit.

Sunny

From: Sher Bauman

Sent: Wednesday, April 29, 2009 1:54 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Afraid

Sunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can.

I have a big mouth to match the big heart Sunny and I seldom mince words.

Your last few posts are sounding much more upbeat.

How are you doing now with food/eating?

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he

may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Have you let the doc know you are continuing to have this same pain???

I'm used to impactions too but doc finally got me on Miralax. Not OTC but Rx only.

It's Polyethylene Glycol. ASK DOC ABOUT THIS. Since I've been on this, NO impactions.

You may be seeing more clearly why doc in ER wanted to admit you...sounds like you needed and still need the immediate care that is available there.

I know, I know, money. But YOU are more important than the money right now Sunny.

You can still go back to ER for immediate care and possible admit. Worry about money afterward. $10/$20 a month may have to be the best you can do...I know there ARE solutions. Pain is inevitable but suffering is optional....

Who is "they" that called inquiring about your O2 carrier? Call the hospital and inquire who the O2 carriers are in your area....Maybe Lincare...good.

But you still will need a Rx from Dr for O2....call his/her office and get their help with a carrier...

One step at a time, one day at a time but don't suffer Sunny. Not one more day!

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Sher,

Pulmo doc's nurse asked me who I preferred as a provider. I told her anyone that would deliver out here in the boondocks. She suggested Lincare and since I haven't heard from them today I will be calling tomorrow to get it straightened out. No more waiting for other people anymore. I am a take charge kind of gal now thanks to you guys. AND.............After the GI doc (surgeon should be calling any day to schedule) I went poo on my own. Hurt like (* & )* & )(*^)*^ & ^ but I feel so much better. Things should get back to normal now. I have IBS and I think that causes me to get impacted. You are right, again! I should have let them admit me and saved myself all these days of pain. I have let guilt over money rule me for too long but no more. If they can fix it and stop the pain then they can get $5 a week forever. No more making a martyr of myself over money. Sometimes I am dense but eventually I see the light. Thanks for turning it on high so I could see it.

Sunny

From: Sher Bauman

Sent: Thursday, April 30, 2009 3:37 PM

To: Breathe-Support

Subject: Re: Afraid

Have you let the doc know you are continuing to have this same pain???

I'm used to impactions too but doc finally got me on Miralax. Not OTC but Rx only.

It's Polyethylene Glycol. ASK DOC ABOUT THIS. Since I've been on this, NO impactions.

You may be seeing more clearly why doc in ER wanted to admit you...sounds like you needed and still need the immediate care that is available there.

I know, I know, money. But YOU are more important than the money right now Sunny.

You can still go back to ER for immediate care and possible admit. Worry about money afterward. $10/$20 a month may have to be the best you can do...I know there ARE solutions. Pain is inevitable but suffering is optional....

Who is "they" that called inquiring about your O2 carrier? Call the hospital and inquire who the O2 carriers are in your area....Maybe Lincare...good.

But you still will need a Rx from Dr for O2....call his/her office and get their help with a carrier...

One step at a time, one day at a time but don't suffer Sunny. Not one more day!

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Sunny, I live in Bonner County and you live in Kootnei but I use Lincare and I like them. Mine are out of Sandpoint but I'll bet they have an office in CDA. I have gained 28 ponds in the last few months. That is Prednisone for you. Beverley

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Caro

i like the way you said what you said and I agree with you

Pink Joyce IPF 3/06 Pennsylvania

Donate Life Listed 1/09 inactive 4/09

www.transplantfund.org---

Subject: Re: AfraidTo: Breathe-Support Date: Thursday, April 30, 2009, 6:07 PM

Hi ,

I think we are all afraid to die and you are definitely not alone!! The people on this board are the best people in the world to have by your side to go through this disease process. My son is 22 and has just recently been diagnosed as being HIV positive and he is afraid of dying, too. Currently he is serving time in jail but is supposed to be released in about 4 months. Unfortunately, he has another charge coming up so he will be going back and we don't know for how long. I think his disease was sexually transmitted although I know he has done drugs before, but I don't think they have been IV drugs (but no, I am not sure). I have times when I don't feel like I can talk to anyone in my family about my illnesses or my son's because they don't understand because they aren't dealing with it on a daily basis. That is why I ABSOLUTELY LOVE this group!! No matter what's on your mind, wonderful

day, crappy day, depressed wanta die day, or any other kind of day, someone will ALWAYS listen!! I am here if you need me. I don't post as often as some of the others, but I do read all the posts. Sometimes I have good days and get on a roll and post all the time, and other days, I don't even want to get out of bed and just crawl in my "hideaway zone," which I know is not a good place to be, but sometimes I end up there without even realizing it and there is always someone here to bring me back and pick me back up!! Welcome, welcome, welcome!! You are not alone!! CaroOSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: "rpickel1 (AT) msn (DOT) com" <rpickel1 (AT) msn (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Thursday, April 30, 2009 3:47:58 PMSubject: Re: Afraid

Sher,

Thank you for your kind words. I am still not eating much at all. I had a cup of brussell sprouts last night and spent 2 hours literally screaming in pain. It just isn't worth it to eat when it causes so much pain. I am trying to drink lots and lots of water because it hurts so bad when I go potty now. I figure another UTI. They aren't infrequent with me but antibiotics usually clears it up fairly quickly. Lupus has attacked me kidneys and done some damage in the past so it is not unexpected or worrisome to me. I am seeing the GI doc at 2:45 today. All morning I have been praying that first off he can figure out why it hurts so bad to eat and why other than at the hospital the other night I don't go poo. Second that he will refer me to a surgeon right away so they can stop the aspiration and my lungs won't be damaged any further. To be honest I am feeling

more confident and more assertive. For the first time I feel like I can question the doctor and make him take time for me. After all don't we all make his house payments? You all have been so good for me I wish there were words to express the changes I am making JUST because of you and everyone else's care and straight talk. And besides all of the other good, I have dropped from 220 size 24W to 170 size 12 in just about 12 weeks. I am looking good and it means I get new clothes. Right now all of the weight seems to be coming off from the waist up. My backside still resembles a humvee going down the I90. Since I can't do hardly any exercise it makes it hard to work it off. I am still waiting, since Tuesday, for my oxygen. The called yesterday to ask what provider I wanted. I had no idea. We live in the boonies and I don't know who delivers here. Supposedly someone was suppose

to call me today to get me set up but no word yet. And by the way: I love your big mouth so don't you dare change a whit.

Sunny

From: Sher Bauman

Sent: Wednesday, April 29, 2009 1:54 PM

To: Breathe-Support@ yahoogroups. com

Subject: Re: Afraid

Sunny... My gosh, thank you for such kind words. I do lay claim to a big heart and I so want to be helpful when/where I can.

I have a big mouth to match the big heart Sunny and I seldom mince words.

Your last few posts are sounding much more upbeat.

How are you doing now with food/eating?

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly" . He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that

he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Sunny... I am so relieved (no pun intended, ;o) you are taking pain seriously. The two of us have/had similar problems. If I can help eliminate (teehee) some of the problems, then you have more strength to fight your disease and advocate for what you need. Constant straining can lead to 'roids and then we have two more problems...impactions and 'roids....

That Rx only (for impaction) I sent you, I urge again for you to ask doc about. This stuff works!

I had surgery on my rectum in 2000...and began having impactions immediately....I won't go in to all the details. Now on this Rx stuff, for the first time, (9 years!) my bowels are not my constant focus.

Now I know this is a bit graphic here but there needs to be enough explanation to make sense...

I strongly believe we just begin to spiral more and more downward with each chronic med problem we have. I hope I can be just a little help to you.

AHA! Oxygen . Another need taken care of, we hope. You will feel so much better now Sunny.

You might mention to Rich that his snoring could be sleep apnea. Just what you want to know, huh... but knowledge is a good thing.

Have a great day!

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.

[Guest guest]

Sunny... I am so relieved (no pun intended, ;o) you are taking pain seriously. The two of us have/had similar problems. If I can help eliminate (teehee) some of the problems, then you have more strength to fight your disease and advocate for what you need. Constant straining can lead to 'roids and then we have two more problems...impactions and 'roids....

That Rx only (for impaction) I sent you, I urge again for you to ask doc about. This stuff works!

I had surgery on my rectum in 2000...and began having impactions immediately....I won't go in to all the details. Now on this Rx stuff, for the first time, (9 years!) my bowels are not my constant focus.

Now I know this is a bit graphic here but there needs to be enough explanation to make sense...

I strongly believe we just begin to spiral more and more downward with each chronic med problem we have. I hope I can be just a little help to you.

AHA! Oxygen . Another need taken care of, we hope. You will feel so much better now Sunny.

You might mention to Rich that his snoring could be sleep apnea. Just what you want to know, huh... but knowledge is a good thing.

Have a great day!

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

Afraid

I've had Interstitial Pulmonary Fibrosis since March 2005. I've been on oxygen 24/7 for awhile. I haven't been feeling well and find myself doing less and less. I went for extensive blood work last month and haven't heard the results. But, I knew I have another doctor's appointment in a few weeks. I went for Pulmonary Function testing the other day and saw the doctor afterwards. I was nervous as to the results. The doctor told my partner & me that the disease has "progressed significantly". He also said that there was an abnormality in one of the blood tests. I was so upset, that I don't remember what he was saying. I'm scheduled for a CAT scan and a broncoscopy in a few weeks. He also mentioned doing a lung biopsy. I don't know if he meant while doing the broncoscopy, or at a later time. If he meant later, I don't think I'll have it done. I've read postings about what people have gone through.He also said that he may prescribe Prednisone with insulin. Prednisone makes me a diabetic. I don't know if it's worth taking one medication with side effects and having to take another to counter them. I have HIV/AIDS and have been through it before.I'm very depressed at the moment. I feel like I'm unable to tell my partner. I guess I shouldn't feel this way, because I've read how others have it worse than me. The doctor told me, awhile ago, to eat more. I have no appetite, but I try. My partner asked me yesterday, if I'm ready to die.I afraid to die. I guess it's because I don't have faith. I've tried to find something, but I can't. I know we're all going to die at some time. But, I'm so scared.Well, thanks for letting me say what's on my mind. I hope someone can understand.