Re: Re: gina / K

April 15, 2008

K.... It is such a hard job being a caregiver to a spouse. I think taking care of children is easier, even when they are gravely ill as well.

It's nearly impossible to keep an opinion as only an opinion and still allow a gravely ill adult to make decisions for themselves.

Don needs to have control over his life , as long as he can have control over his life. He needs that even if you disagree.

I notice in most of your posts you write about what you like or don't like about what Don may need/want. Like "I'm not sure how I feel about that"...(Don wanting to go off prednisone)

I hope you will not take offense to something I want to say to you....it's times like this when writing can't convey a feeling or an attitude. I want to help you help Don. Bruce touched on this too, in a different way.

Don will feel like he wants to die but let's hope it isn't a plan of action and he's only expressing feelings of frustration and anger because he isn't the man he used to be. He feels like a burden to you.

Yes, that was tough to take when he said it. Did you talk about those feelings with him?

Hospice teaches that it's just about the hardest thing a spouse can do, is to put themselves aside and concentrate on the one who deals with a life-threatening disease every moment.

I asked you once before if there is anyone else to help with Don? I know his parents are dead but is there a good friend or Pastor or sibling? You need a break and a rest too.

Many here on the board have come off prednisone. It's no cure to begin with. I hope you can discuss Don's thinking about prednisone with him and not have him feel guilty if he wants something you do not want.

Mama means well here . You are in such a difficult time.

Hugs to you both.

Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there!

Re: Re: gina

Wow! Are you a doctor? Even our doc didn't explain it like that. That was very good. It has been a very bad 6 days. We thought that the entrance of the high pressure into the midwest would make him feel better. He is not. He has decided that when we go to Springfield to see the ENT doc he wants to go see the pulmonlogist and tell him to take him off the prednisone. I'm not sure how I feel about that. He said he wants to just die. That was tough to take.

k

Illinois <gina.francisbigpond> wrote:

Dear K,

From all the reading I've done I'd say that's pretty much it for the time being ......treatments that are known to be effective ACROSS the RANGE of PF conditions just do NOT exist.

However & it IS a big HOWEVER..... SOME patients DO respond to certain therapies such as Prednisone./ Imuran etc..some for a short period, some seem to respond all the time.

FOR EXAMPLE it's known that CELLULAR NSIP is a 'GOOD' responder...Mixed NSIP & Fibrotic NSIP are less certain, but there has been success for people with this form as well. Z & Beth are 2 people on this Forum who've had good response to Prednisone in terms of it stabilizing their PF.

People with UNDERLYING conditions such as Connective Tissue Disorders or Auto-Immune Disease aslo take Prednisone to control those disease processes. In those cases it is obviously beneficial to control the underlying casue of the diease process that lead to PF in the first place.

Although, in my mind, it DOES beg the question : WHY do Patients who've been taking Prednisone for years to control those diseases go on to develop PF at all if Prednisone is so darn good a drug for PF ????????

UIP is the one where the success is known to be poor unless there is a lot of inflamation & the Prednisone can at least reduce that aspect of the disease...it DOES NOT & CAN NOT reduce the scarring (Fibrosis). Doctors often prescribe it anyway for a variety of reasons (including merely wanting to something, ANYTHING to give their patients hope!)

Even if Don had a form that can respond in some way to Steroid/Autoimmune Treatments the downside can be that the side effects become too severe to continue. No one knows until they start the course of treatments. Some side effects can take a long time to show up. Some side effects stop (eg Diabetes, shakiness, weight gain) when the treatment stops..others become permanent! (eg Cataract, glaucoma, osteoporosis damage)

The 2 Drugs that do seem to be of universal benefit are O2 & NAC ( N- Acetyl Cysteine...given to relieve mucous production but now also thought to be operating at a cellular level to slow progression within lung tissue structures) There is now a Trial to go ahead to test the egffectives of NAC.

O2 use helps prevent damage to other major organs in the body & therefore helps to prolong life. as well as to ENJOY it more. I think it is critical that new patients are taught to understand just why O2 is so important. Doctors need to recognise that the 6 min walk is NOT a satisfactory indicator of O2 needs when taking exercise. I don't think it is good enough that Doctors wait to prescribe O2 until a patient is OBVIOUSLY displaying signs of Oxygn deprivation (blue lips, clubbing of the fingers, cold extremities, & dropping SATs in the 6 min Walk Test etc etc )

Now that many of us are being diagnosed in earlier stages of the Disease Process it is CRITICAL that we monitor ourselves for signs of dropping SATS when we ARE being active...not just sitting in a Doctor's Office, after an hour's waiting time (Sitting of course!) I don't WANT to just WALK thank you...I want to be out there LIVING....

Having a Lung Biopsy would hopefully indicate which TYPE of PF that Don has, but a word of warning...it needs to be done by one of the Facilities that specialise in PF....they need to take samples from 3 sites to cross examine what's going on in the lung. Other wise the Biopsy can be a waste of effort, especially given that it IS an invasive procedure with varying recovery times.

If Don was wanting to join any of the Clinical Trials he would have to have a Biopsy to be eligible.

WE've all had different experiences....try outting VATS in the Search facility on the Web Message Board you'll get lots of discussion that has gone on previously on this subject...as well as Prednisone...there's OODLES on that subject!

in Oz

IPF: Fibrotic NSIP/ UIP???????

Reynauds'

May 2007

> > > > >> > > > > Sher,> > > > > I'm happy to hear the doctors have switched your diagnosis. NSIP> > > > is definitely preferable to IPF, the life expectancy is much longer> > > > and as a bonus, it does not always progress. As a matter of fact,> > > > Dr. on at Duke just told me last month that he's seen > > patients> > > > with NSIP who have been "stable for decades." I mean I know that my> > > > experience may be different but anything that gives us hope is> > > > helpful!> > > > > Have they switched your dx based on the behavior of the > > disease or> > > > also on the ct scan results? NSIP is usually very identifiable > > by CT> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > > you> > > > would need a biopsy. But at this point it probably doesn't > > matter as> > > > long as your stable. I understand why you wouldn't put yourself> > > > through that. I don't regret my biopsy but I totally get why you've> > > > chosen not to go down that road.> > > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > >> > >> > > > > > > > > > Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > RHEUMATOID ARTHRITIS 03/08> > Mississippi> > __________________________________________________> >

April 15, 2008

Mama, I really won't interfere with what he wants. I can't feel his pain. He knows my pain. I understand where he is. Thank you so much for the wise words. sob sob. You are such a strong member of this board. I couldn't do it without you-------all of you. The boys are really the ones who have convinced him to dump the steroids and I know Don well enough that he will give Dr. the ultimatum and if he gives Don any hassle he will threaten to do it himself. He can be onery that way. Mama, I would never take offense to what you would say to me. I know mama knows best. I am getting tired and I have asked my daughter in law to take me shopping some Sunday and her hubby could stay with Don. Thanks a million and I really feel the love. K IllinoisSher Bauman

wrote: K.... It is such a hard job being a caregiver to a spouse. I think taking care of children is easier, even when they are gravely ill as well. It's nearly impossible to keep an opinion as only an opinion and still allow a gravely ill adult to make decisions for themselves. Don needs to have control over his life , as long as he can have

control over his life. He needs that even if you disagree. I notice in most of your posts you write about what you like or don't like about what Don may need/want. Like "I'm not sure how I feel about that"...(Don wanting to go off prednisone) I hope you will not take offense to something I want to say to you....it's times like this when writing can't convey a feeling or an attitude. I want to help you help Don. Bruce touched on this too, in a different way. Don will feel like he wants to die but let's hope it isn't a plan of action and he's only expressing feelings of frustration and anger because he isn't the man he used to be. He feels like a burden to you. Yes, that was tough to take when he said it. Did you

talk about those feelings with him? Hospice teaches that it's just about the hardest thing a spouse can do, is to put themselves aside and concentrate on the one who deals with a life-threatening disease every moment. I asked you once before if there is anyone else to help with Don? I know his parents are dead but is there a good friend or Pastor or sibling? You need a break and a rest too. Many here on the board have come off prednisone. It's no cure to begin with. I hope you can discuss Don's thinking about prednisone with him and not have him feel guilty if he wants something you do not want. Mama means well here . You are in such a difficult time. Hugs

to you both. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Re: gina Wow! Are you a doctor? Even our doc didn't explain it

like that. That was very good. It has been a very bad 6 days. We thought that the entrance of the high pressure into the midwest would make him feel better. He is not. He has decided that when we go to Springfield to see the ENT doc he wants to go see the pulmonlogist and tell him to take him off the prednisone. I'm not sure how I feel about that. He said he wants to just die. That was tough to take. k Illinois <gina.francisbigpond> wrote: Dear K, From all the reading I've done I'd say that's pretty

much it for the time being ......treatments that are known to be effective ACROSS the RANGE of PF conditions just do NOT exist. However & it IS a big HOWEVER..... SOME patients DO respond to certain therapies such as Prednisone./ Imuran etc..some for a short period, some seem to respond all the time. FOR EXAMPLE it's known that CELLULAR NSIP is a 'GOOD' responder...Mixed NSIP & Fibrotic NSIP are less certain, but there has been success for people with this form as well. Z & Beth are 2 people on this Forum who've had good response to Prednisone in terms of it stabilizing their PF. People with UNDERLYING conditions such as Connective Tissue Disorders or Auto-Immune Disease aslo take Prednisone to control those disease processes. In those cases it is obviously beneficial to control the underlying casue of the diease process that lead to PF in the first place. Although, in my mind, it DOES beg the question : WHY do Patients who've been taking Prednisone for years to control those diseases go on to develop PF at all if Prednisone is so darn good a drug for PF ???????? UIP is the one where the success is known to be poor unless there is a lot of inflamation & the Prednisone can at least reduce that aspect of the disease...it DOES NOT & CAN NOT reduce the scarring (Fibrosis). Doctors often prescribe it anyway for a variety of reasons (including merely wanting to something, ANYTHING to give their patients hope!) Even if Don had a form that can respond in some way to Steroid/Autoimmune Treatments the downside can be that the side effects become too severe to continue. No one knows until they start the course of treatments. Some side effects can take a long time to show up. Some side effects stop (eg Diabetes,

shakiness, weight gain) when the treatment stops..others become permanent! (eg Cataract, glaucoma, osteoporosis damage) The 2 Drugs that do seem to be of universal benefit are O2 & NAC ( N- Acetyl Cysteine...given to relieve mucous production but now also thought to be operating at a cellular level to slow progression within lung tissue structures) There is now a Trial to go ahead to test the egffectives of NAC. O2 use helps prevent damage to other major organs in the body & therefore helps to prolong life. as well as to ENJOY it more. I think it is critical that new patients are taught to understand just why O2 is so important. Doctors

need to recognise that the 6 min walk is NOT a satisfactory indicator of O2 needs when taking exercise. I don't think it is good enough that Doctors wait to prescribe O2 until a patient is OBVIOUSLY displaying signs of Oxygn deprivation (blue lips, clubbing of the fingers, cold extremities, & dropping SATs in the 6 min Walk Test etc etc ) Now that many of us are being diagnosed in earlier stages of the Disease Process it is CRITICAL that we monitor ourselves for signs of dropping SATS when we ARE being active...not just sitting in a Doctor's Office, after an hour's waiting time (Sitting of course!) I don't WANT to just WALK thank you...I want to be out there LIVING.... Having a Lung Biopsy would hopefully indicate which TYPE of PF that Don has, but a word of warning...it needs to be done by one of the Facilities that specialise in PF....they need to take samples from 3 sites to cross examine what's going on in the lung. Other wise the Biopsy can be a waste of effort, especially given that it IS an invasive procedure with varying recovery times. If Don was wanting to join any of the Clinical Trials he would have to have a Biopsy to be eligible. WE've all had

different experiences....try outting VATS in the Search facility on the Web Message Board you'll get lots of discussion that has gone on previously on this subject...as well as Prednisone...there's OODLES on that subject! in Oz IPF: Fibrotic NSIP/ UIP??????? Reynauds' May 2007 > > > > >> > > > > Sher,> > > > > I'm

happy to hear the doctors have switched your diagnosis. NSIP> > > > is definitely preferable to IPF, the life expectancy is much longer> > > > and as a bonus, it does not always progress. As a matter of fact,> > > > Dr. on at Duke just told me last month that he's seen > > patients> > > > with NSIP who have been "stable for decades." I mean I know that my> > > > experience may be different but anything that gives us hope is> > > > helpful!> > > > > Have they switched your dx based on the behavior of the > > disease or> > > > also on the ct scan results? NSIP is usually very identifiable > > by CT> > > > scan. To identify the type of NSIP (fibrotic, cellular or mixed) > > you> > > > would need a biopsy. But at this point it probably doesn't > > matter

as> > > > long as your stable. I understand why you wouldn't put yourself> > > > through that. I don't regret my biopsy but I totally get why you've> > > > chosen not to go down that road.> > > > > In the meantime, celebrate stability!! Stable is my happy word!!> > > > > Beth> > > > > Age 48 Fibrotic NSIP 06/06> > > > >> > > > > Change everything. Love and Forgive> > > > >> > > >> > >> > > > > > > > > > Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, > > RHEUMATOID ARTHRITIS 03/08> > Mississippi> > __________________________________________________> >

April 16, 2008

K... I'm sure after so many years you and Don know each other so well and I know he hurts for you and the boys.

I hope he won't go off the prednisone cold turkey. Those who have experience I listen to.

I hope you can get away for awhile...and go shopping. Do something just for you .

You will worry about Don all the while you're gone but nonetheless you need breaks. You will feel stronger too. Your boys need you too. If you and Don are both down........

I'm very relieved you did not take offense. I know I'm direct, I try to soften things down and often rewrite before I send, but my heart is in the right place and I want so badly to help Don and you as well.

Love to you both.