Re: Live Like You Were Dying

[Guest guest]

Bruce, very well said.

Patti, I was fearful and depressed when learning of my diagnosis and prognosis and knew I needed to find a counselor to help me work out some of these issues. All the old hopes and dreams were gone and at first that was terribly sad to me and I grieved over that loss. But with the help of my counselor I am making new plans.

The disease itself is ugly and yes we have to live with it and manage it the best we can, but it doesn't have to define who we are. I don't want to obsess about the poor prognosis of this disease, I want to focus on what's important to me, what I most want to be doing with my time.

Don't sit around in fear waiting until you die, but do "live like you were dying."

I'm actually kind of excited because I get to do all those things I was putting off to do when I retired from work...13 years earlier!!

The reality is that I do have some limitations (the oxygen use reminds me daily) and some days its frustrating and depressing, but today I'm not actively dying and I'm not bed-ridden and that is worth celebrating!!!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

To: Breathe-Support Sent: Tue, December 15, 2009 12:45:22 PMSubject: Re: lung biopsy

Positive: You're alive. You can enjoy life with UIP/IPF. It can be thebest years you've had if you make it so. You don't have Alzheimer's. Youdon't have cancer. You don't have ALS. You weren't just in an accidentand laying paralyzed in a hospital bed being kept alive by artificialmeans.If what you want is to be told you're going to live forever and behealthy its not there. In fact the prognosis isn't good. But you arealive and life can be whatever you make it for as long as you have it.Death is a moment in time. It happens on its own and doesn't require alot of time or effort or work ahead of time. Life is every moment untilthat one and each can be treasured. Most also believe that what comesafter death is good. That's subject to individual belief.But today is about living. I have UIP/IPF and I'm making this the besttime of my life. It's natural you are struggling with it. I

stronglysuggest counseling if dealing with the disease is overwhelming you. Youaren't suppose to fight anything. But ultimately there is radicalacceptance and then making the most of it.What have you really learned? That you'll ultimately die sometime? Youknew that. That it may be sooner than you hoped? Wasn't that alwayspossible? That it may be from UIP/IPF? It may not and as causes of deathgo this certainly is not one of the worst ones.Whether transplant is something you might pursue, I don't know.It's hard but I am thankful for what I do have.. I do feel lucky when Isee many others. Visit some forums of diseases where every day is filledwith pain beyond our imagination. I've done so when other possibleconditions have been mentioned. I think of Brett Bowser and what he andhis family would have given for a diagnosis of just IPF/UIP.I know I'm more focused on living and on making the

most of life than Iever was before. I know I strengthened relationships with family andvisited those I hadn't seen for so long. In fact, I'll be making anothertrip in January or February and see them in the process (and you, Beth). I've done things since diagnosis that without this disease Iwould have put off forever, one year at a time. I always said "nextyear" but now I live each year as if it's my last. I wish I'd alwayslived this way.I know my personal odds because I'm too much a person seekinginformation and who has laid them out to help make some decisions inlife. I've calculated odds of making it to various dates but I know Idon't have a stamp on my derriere with an expiration date..My glass is 97% empty if I choose to look at it that way. Instead, I'mgoing to look at the 3% still in the glass and think of it as the finestchampagne ever poured and savor it one sip at a time. And

instead ofthinking as a normal glass, I'm picturing a glass that is about a miletall and so the amount still in it is still quite a bit to savor.This is just how I'm personally approached life with UIP/IPF. I'm nottrying to minimize it but taking this kind of attitude is how I do livewith it, how I do find the positive. I even laugh about my mortality andjoke about the harsh realities with those closest to me because while Ican't beat the disease physically, I can beat it mentally andemotionally and I intend to. Does it win some days? Oh yes it winsbattles. But I'm winning the war. I can control that part. I control howI spend each day and how much pleasure I derive from it. I do have theworld's best counselor and I lean on her and will do so when I need to.Some don't need one but I do. She's more valuable to me than mypulmonologist, rheumatologist, nephrologist, neurologist,

pulmonaryhypertension specialist, cardiologist, gastroenterologist, primary,opthalmologist, ontorologist, and dermatologist all combined.Life is good. It will end. But today it is good. And tomorrow it willbe. I'll deal with Friday later.>> Beth,> How come every time I read a post about IPF/UIP it is so frightening. I feel like I'm just waiting until the day I die. I know that I amsuppose to fight this feeling but I don't see anything positive comingout of this.> >>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 15, 2009 10:48:10 AM> Subject: Re: lung biopsy>>> Patti,> I would not call it a general consensus by any means. There is a widevariety of experiences and opinions here and very little in the way ofagreement or consensus. That's what makes this decision so verydifficult.> I had an open lung biopsy in June of 2006. The surgery itself wasuneventful. My reaction to the pre-op sedation and the anesthesia wasanything but. I recovered fairly easily from the biopsy and once thestiches were out I've never had so much as a twinge. If I had it to doover again, I would because I gained useful information. It's not just amatter of obsessively having to know what the label is. It's learningand understanding what I have in order to know what my

options are.Perhaps if the biopsy just said UIP I would feel differently, I'll neverknow. But because I was diagnosed with NSIP we knew that prednisone wasa reasonable option for me and proceeded accordingly. My biopsy resultsstill have bearing on my treatment all this time later. If I had not hadthe biopsy and was treated as though I had IPF/UIP I probably wouldn'tbe here since the steroids halted the progression and eventuallystablized me. So I have no regrets.>> I would not however tell anyone to do the same thing. You have toweigh the pros and cons for yourself. Take into consideration thingslike your current condition and stability, how certain is your currentdiagnosis, your surgeons experience, your anethesiologists experiencewith pf patients.... all these things factor in to a solid decision.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis

11/08>>>>>>> ____________ _________ _________ __> From: Patti Bruckman napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Mon, December 14, 2009 10:47:07 PM> Subject: Re: lung biopsy>>> I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give anymore information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns.>> .......that is just terrible about your brother....I am so sorry.>>> Patti....IPF. ...2007>

[Guest guest]

thanks for that

<FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT>

To: Breathe-Support Sent: Wed, December 16, 2009 12:01:43 AMSubject: Re: Live Like You Were Dying

Bruce, very well said.

Patti, I was fearful and depressed when learning of my diagnosis and prognosis and knew I needed to find a counselor to help me work out some of these issues. All the old hopes and dreams were gone and at first that was terribly sad to me and I grieved over that loss. But with the help of my counselor I am making new plans.

The disease itself is ugly and yes we have to live with it and manage it the best we can, but it doesn't have to define who we are. I don't want to obsess about the poor prognosis of this disease, I want to focus on what's important to me, what I most want to be doing with my time.

Don't sit around in fear waiting until you die, but do "live like you were dying."

I'm actually kind of excited because I get to do all those things I was putting off to do when I retired from work...13 years earlier!!

The reality is that I do have some limitations (the oxygen use reminds me daily) and some days its frustrating and depressing, but today I'm not actively dying and I'm not bed-ridden and that is worth celebrating! !!

C_53_Familial IPF_5/09, Washington

HOPE doesn't disappoint!

From: Bruce <brucemoreland@ gmail.com>To: Breathe-Support@ yahoogroups. comSent: Tue, December 15, 2009 12:45:22 PMSubject: Re: lung biopsy

Positive: You're alive. You can enjoy life with UIP/IPF. It can be thebest years you've had if you make it so. You don't have Alzheimer's. Youdon't have cancer. You don't have ALS. You weren't just in an accidentand laying paralyzed in a hospital bed being kept alive by artificialmeans.If what you want is to be told you're going to live forever and behealthy its not there. In fact the prognosis isn't good. But you arealive and life can be whatever you make it for as long as you have it.Death is a moment in time. It happens on its own and doesn't require alot of time or effort or work ahead of time. Life is every moment untilthat one and each can be treasured. Most also believe that what comesafter death is good. That's subject to individual belief.But today is about living. I have UIP/IPF and I'm making this the besttime of my life. It's natural you are struggling with it. I

stronglysuggest counseling if dealing with the disease is overwhelming you. Youaren't suppose to fight anything. But ultimately there is radicalacceptance and then making the most of it.What have you really learned? That you'll ultimately die sometime? Youknew that. That it may be sooner than you hoped? Wasn't that alwayspossible? That it may be from UIP/IPF? It may not and as causes of deathgo this certainly is not one of the worst ones.Whether transplant is something you might pursue, I don't know.It's hard but I am thankful for what I do have.. I do feel lucky when Isee many others. Visit some forums of diseases where every day is filledwith pain beyond our imagination. I've done so when other possibleconditions have been mentioned. I think of Brett Bowser and what he andhis family would have given for a diagnosis of just IPF/UIP.I know I'm more focused on living and on making

the most of life than Iever was before. I know I strengthened relationships with family andvisited those I hadn't seen for so long. In fact, I'll be making anothertrip in January or February and see them in the process (and you, Beth). I've done things since diagnosis that without this disease Iwould have put off forever, one year at a time. I always said "nextyear" but now I live each year as if it's my last. I wish I'd alwayslived this way.I know my personal odds because I'm too much a person seekinginformation and who has laid them out to help make some decisions inlife. I've calculated odds of making it to various dates but I know Idon't have a stamp on my derriere with an expiration date..My glass is 97% empty if I choose to look at it that way. Instead, I'mgoing to look at the 3% still in the glass and think of it as the finestchampagne ever poured and savor it one sip at a time.

And instead ofthinking as a normal glass, I'm picturing a glass that is about a miletall and so the amount still in it is still quite a bit to savor.This is just how I'm personally approached life with UIP/IPF. I'm nottrying to minimize it but taking this kind of attitude is how I do livewith it, how I do find the positive. I even laugh about my mortality andjoke about the harsh realities with those closest to me because while Ican't beat the disease physically, I can beat it mentally andemotionally and I intend to. Does it win some days? Oh yes it winsbattles. But I'm winning the war. I can control that part. I control howI spend each day and how much pleasure I derive from it. I do have theworld's best counselor and I lean on her and will do so when I need to.Some don't need one but I do. She's more valuable to me than mypulmonologist, rheumatologist, nephrologist, neurologist,

pulmonaryhypertension specialist, cardiologist, gastroenterologist, primary,opthalmologist, ontorologist, and dermatologist all combined.Life is good. It will end. But today it is good. And tomorrow it willbe. I'll deal with Friday later.>> Beth,> How come every time I read a post about IPF/UIP it is so frightening. I feel like I'm just waiting until the day I die. I know that I amsuppose to fight this feeling but I don't see anything positive comingout of this.> >>>>> ____________ _________ _________ __> To: Breathe-Support@ yahoogroups. com> Sent: Tue, December 15, 2009 10:48:10 AM> Subject: Re: lung biopsy>>> Patti,> I would not call it a general consensus by any means. There is a widevariety of experiences and opinions here and very little in the way ofagreement or consensus. That's what makes this decision so verydifficult.> I had an open lung biopsy in June of 2006. The surgery itself wasuneventful. My reaction to the pre-op sedation and the anesthesia wasanything but. I recovered fairly easily from the biopsy and once thestiches were out I've never had so much as a twinge. If I had it to doover again, I would because I gained useful information. It's not just amatter of obsessively having to know what the label is. It's learningand understanding what I have in order to know what my

options are.Perhaps if the biopsy just said UIP I would feel differently, I'll neverknow. But because I was diagnosed with NSIP we knew that prednisone wasa reasonable option for me and proceeded accordingly. My biopsy resultsstill have bearing on my treatment all this time later. If I had not hadthe biopsy and was treated as though I had IPF/UIP I probably wouldn'tbe here since the steroids halted the progression and eventuallystablized me. So I have no regrets.>> I would not however tell anyone to do the same thing. You have toweigh the pros and cons for yourself. Take into consideration thingslike your current condition and stability, how certain is your currentdiagnosis, your surgeons experience, your anethesiologists experiencewith pf patients.... all these things factor in to a solid decision.>> Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis

11/08>>>>>>> ____________ _________ _________ __> From: Patti Bruckman napa73 (AT) comcast (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Mon, December 14, 2009 10:47:07 PM> Subject: Re: lung biopsy>>> I thank everyone for all your comments concerning a surgical biopsy. It appears that the general consensus is that it often does not give anymore information than the bronchoscope and perhaps not worth the risk. If they suggest this I certainly will voice my concerns.>> .......that is just terrible about your brother....I am so sorry.>>> Patti....IPF. ...2007>