Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 Hi Peggy, I am so sorry to hear about your friend Alyce. I understand how frustrating her situation must be to both her husband and you. With both IPF and COPD, her oxygen situation is precarious. Having just gone through hospice with my mother (also a COPD patient) I know what a delicate balance the liter flow of oxygen is. Too much oxygen causes a buildup of co2, the dizzyness, being totally disoriented and struggling to breathe; our normal instincts are to crank up the oxygen when struggling to breathe. With COPD--you just can't turn it up! With my mother, we had a VPAP which we had to use to decrease the CO2 levels. When she returned to " normal " , we then put her back on her canula at her " normal " 2 liter flow until another episode. I don't know if they have considered a VPAP or if one would benefit her with both diseases, but I hope they can figure out how to make her comfortable.. My mother was also prescribed morphine , but after giving it to her twice and seeing how it affected her (groggy, mumbling, restless) we asked her if she wanted to discontinue taking it and she said " YES " ; so we didn't give it to her anymore. We instead had a cream formulation of lorazapam which we massaged on her wrists or throat---this seemed to calm her down enough that she wasn't struggling so hard to breathe. I wish her and you peace in the coming days. Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid > > Subject: Alyce up-date > To: Breathe-Support > Date: Wednesday, January 21, 2009, 10:27 AM > Hello everyone, My friend Alyce is having a horrible time. > Hospice hasn't been giving her any more that 6L and she > drops really low so now she is confined to the bed. When > they ask her Dr. he said with her condition any more than > two leaders would > be counter productive.. She has IPF/COPD. If her saturation > is dropping when she tries to move she needs more 02.. > When Burch (her hubby) questioned it he was told to do as > he said or find another Doc.... they have had about four > already... > This is just the reason I will not go to a local.. They > think they KNOW it all and know very little about IPF > > Anyhow the point of this post is to ask for prayers for > Alyce today. The morfien has her really groggy until Burch > can't understand her, OH I WANNA SCREAM.. this disease > is HORRRRRIBLE. Might throw in a word for me. I am having a > rough spot with all this. > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us > to our feet, > when our wings have trouble remembering how to fly. " > > >  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 Hi Peggy, I am so sorry to hear about your friend Alyce. I understand how frustrating her situation must be to both her husband and you. With both IPF and COPD, her oxygen situation is precarious. Having just gone through hospice with my mother (also a COPD patient) I know what a delicate balance the liter flow of oxygen is. Too much oxygen causes a buildup of co2, the dizzyness, being totally disoriented and struggling to breathe; our normal instincts are to crank up the oxygen when struggling to breathe. With COPD--you just can't turn it up! With my mother, we had a VPAP which we had to use to decrease the CO2 levels. When she returned to " normal " , we then put her back on her canula at her " normal " 2 liter flow until another episode. I don't know if they have considered a VPAP or if one would benefit her with both diseases, but I hope they can figure out how to make her comfortable.. My mother was also prescribed morphine , but after giving it to her twice and seeing how it affected her (groggy, mumbling, restless) we asked her if she wanted to discontinue taking it and she said " YES " ; so we didn't give it to her anymore. We instead had a cream formulation of lorazapam which we massaged on her wrists or throat---this seemed to calm her down enough that she wasn't struggling so hard to breathe. I wish her and you peace in the coming days. Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid > > Subject: Alyce up-date > To: Breathe-Support > Date: Wednesday, January 21, 2009, 10:27 AM > Hello everyone, My friend Alyce is having a horrible time. > Hospice hasn't been giving her any more that 6L and she > drops really low so now she is confined to the bed. When > they ask her Dr. he said with her condition any more than > two leaders would > be counter productive.. She has IPF/COPD. If her saturation > is dropping when she tries to move she needs more 02.. > When Burch (her hubby) questioned it he was told to do as > he said or find another Doc.... they have had about four > already... > This is just the reason I will not go to a local.. They > think they KNOW it all and know very little about IPF > > Anyhow the point of this post is to ask for prayers for > Alyce today. The morfien has her really groggy until Burch > can't understand her, OH I WANNA SCREAM.. this disease > is HORRRRRIBLE. Might throw in a word for me. I am having a > rough spot with all this. > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us > to our feet, > when our wings have trouble remembering how to fly. " > > >  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 Hi Peggy, I am so sorry to hear about your friend Alyce. I understand how frustrating her situation must be to both her husband and you. With both IPF and COPD, her oxygen situation is precarious. Having just gone through hospice with my mother (also a COPD patient) I know what a delicate balance the liter flow of oxygen is. Too much oxygen causes a buildup of co2, the dizzyness, being totally disoriented and struggling to breathe; our normal instincts are to crank up the oxygen when struggling to breathe. With COPD--you just can't turn it up! With my mother, we had a VPAP which we had to use to decrease the CO2 levels. When she returned to " normal " , we then put her back on her canula at her " normal " 2 liter flow until another episode. I don't know if they have considered a VPAP or if one would benefit her with both diseases, but I hope they can figure out how to make her comfortable.. My mother was also prescribed morphine , but after giving it to her twice and seeing how it affected her (groggy, mumbling, restless) we asked her if she wanted to discontinue taking it and she said " YES " ; so we didn't give it to her anymore. We instead had a cream formulation of lorazapam which we massaged on her wrists or throat---this seemed to calm her down enough that she wasn't struggling so hard to breathe. I wish her and you peace in the coming days. Roxanne, 58, South Carolina 2006 Asthma/ PF 2008 IPF/ Sarcoidosis/Gerd Lady Slipper Orchid > > Subject: Alyce up-date > To: Breathe-Support > Date: Wednesday, January 21, 2009, 10:27 AM > Hello everyone, My friend Alyce is having a horrible time. > Hospice hasn't been giving her any more that 6L and she > drops really low so now she is confined to the bed. When > they ask her Dr. he said with her condition any more than > two leaders would > be counter productive.. She has IPF/COPD. If her saturation > is dropping when she tries to move she needs more 02.. > When Burch (her hubby) questioned it he was told to do as > he said or find another Doc.... they have had about four > already... > This is just the reason I will not go to a local.. They > think they KNOW it all and know very little about IPF > > Anyhow the point of this post is to ask for prayers for > Alyce today. The morfien has her really groggy until Burch > can't understand her, OH I WANNA SCREAM.. this disease > is HORRRRRIBLE. Might throw in a word for me. I am having a > rough spot with all this. > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us > to our feet, > when our wings have trouble remembering how to fly. " > > >  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 Peggy, I'm so sorry to hear how Alyce is struggling. My prayers are with them and also with you today. Roxanne makes a very good suggestion about the VPAP. It's possible it could help the situation some. Maybe Burch could ask the doctor about it. I know how frustrating it is. The combination of resrictive and obstructive lung disease is a nightmare and unfortunately her doctors have legitimate concerns about the build up of CO2. At this point though I know Burch just wants her kept comfortable. That should be everyones top priority. I'm prayin Peggy, I promise!! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, January 21, 2009 10:42:33 AMSubject: Re: Alyce up-date Hi Peggy,I am so sorry to hear about your friend Alyce. I understand how frustrating her situation must be to both her husband and you. With both IPF and COPD, her oxygen situation is precarious. Having just gone through hospice with my mother (also a COPD patient) I know what a delicate balance the liter flow of oxygen is. Too much oxygen causes a buildup of co2, the dizzyness, being totally disoriented and struggling to breathe; our normal instincts are to crank up the oxygen when struggling to breathe. With COPD--you just can't turn it up!With my mother, we had a VPAP which we had to use to decrease the CO2 levels. When she returned to "normal", we then put her back on her canula at her "normal" 2 liter flow until another episode.I don't know if they have considered a VPAP or if one would benefit her with both diseases, but I hope they can figure out how to make her comfortable. . My mother was also prescribed morphine , but after giving it to her twice and seeing how it affected her (groggy, mumbling, restless) we asked her if she wanted to discontinue taking it and she said "YES"; so we didn't give it to her anymore. We instead had a cream formulation of lorazapam which we massaged on her wrists or throat---this seemed to calm her down enough that she wasn't struggling so hard to breathe.I wish her and you peace in the coming days.Roxanne, 58, South Carolina2006 Asthma/ PF2008 IPF/ Sarcoidosis/ GerdLady Slipper Orchid> From: Peggy <pac1773 (AT) cfl (DOT) rr.com>> Subject: Alyce up-date> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, January 21, 2009, 10:27 AM> Hello everyone, My friend Alyce is having a horrible time.> Hospice hasn't been giving her any more that 6L and she> drops really low so now she is confined to the bed. When> they ask her Dr. he said with her condition any more than> two leaders would> be counter productive.. She has IPF/COPD. If her saturation> is dropping when she tries to move she needs more 02..> When Burch (her hubby) questioned it he was told to do as> he said or find another Doc.... they have had about four> already...> This is just the reason I will not go to a local.. They> think they KNOW it all and know very little about IPF> > Anyhow the point of this post is to ask for prayers for> Alyce today. The morfien has her really groggy until Burch> can't understand her, OH I WANNA SCREAM.. this disease> is HORRRRRIBLE. Might throw in a word for me. I am having a> rough spot with all this.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us> to our feet,> when our wings have trouble remembering how to fly."> > >  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009 Peggy I don't know her specifics but with COPD what she is being told to do may make some sense. Her's is a complex situation. While she needs enough oxygen to maintain sats, she does need to avoid too much. The balance can be a challenge. I don't honestly know that we even have a fix on her true diagnosis. Hospice is just trying to keep her free from pain and I hope the morphine is doing so. It may be that her husband and you are experiencing more pain than she is at this point. You may be wanting to fix something that isn't fixable, I'm afraid to say. You do make the point of getting to doctors with expertise as early in the process as you can. Be sure the diagnosis is correct and the knowledge is there. Local doctors generally have a lot of experience with COPD and very little with PF. I don't know which she has or if she has both or which is the most serious to her at this point. The main thing I'd ask is if she's in pain. This doesn't mean can she do as she wishes or breathe as she wishes. Just how is her suffering. Thats what hospice is about, pallative care. That's item and agenda one. Then you and her husband are next. Take comfort if her pain is minimal and then try, as hard as it might be, to accept. Your pain is from the thought of a loss of a friend. All you can do is talk to her when she is her most lucid. Sit with her if you can. Pray for her comfort. > > Hello everyone, My friend Alyce is having a horrible time. Hospice > hasn't been giving her any more that 6L and she drops really low so > now she is confined to the bed. When they ask her Dr. he said with > her condition any more than two leaders would > be counter productive.. She has IPF/COPD. If her saturation is > dropping when she tries to move she needs more 02.. > When Burch (her hubby) questioned it he was told to do as he said or > find another Doc.... they have had about four already... > This is just the reason I will not go to a local.. They think they > KNOW it all and know very little about IPF > > Anyhow the point of this post is to ask for prayers for Alyce today. > The morfien has her really groggy until Burch can't understand her, > OH I WANNA SCREAM.. this disease is HORRRRRIBLE. Might throw in a > word for me. I am having a rough spot with all this. > > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > > >  > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009  I'm sorry Peggy, about your friend Alyce. There is good solid and dependable advice here on this board but it doesn't do a damn bit of good if it's blocked by a dr who doesn't know about PF! Prayers have already been said, for both of you! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Alyce up-date Hello everyone, My friend Alyce is having a horrible time. Hospice hasn't been giving her any more that 6L and she drops really low so now she is confined to the bed. When they ask her Dr. he said with her condition any more than two leaders would be counter productive.. She has IPF/COPD. If her saturation is dropping when she tries to move �she needs more 02..� When Burch (her hubby) questioned it he was told to do as he said or find another Doc.... they have had about four already... This is just the reason I will not go to a local.. They think they KNOW it all and know very little about IPF Anyhow the point of this post is to ask for prayers for Alyce today. The morfien has her really groggy until Burch can't understand her, �OH I WANNA SCREAM.. this disease is HORRRRRIBLE. �Might throw in a word for me. I am having a rough spot with all this. Love & Prayers, Peggy Florida, �IPF/UIP 2004 "I believe that friends are quiet angels�who lift us to our feet,� when our wings�have trouble remembering how to fly."� Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009  Well...I spoke to quickly...sorry. I know nothing about a VPAP or the problems concerning both COPD/PF. I reacted to Peggy's concerns and made an assumption that it was the dr's fault. Sorry group. I will leave what I don't know to those who do know. I thought I was wrong once, but I was mistaken! heheeehe MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Alyce up-date> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, January 21, 2009, 10:27 AM> Hello everyone, My friend Alyce is having a horrible time.> Hospice hasn't been giving her any more that 6L and she> drops really low so now she is confined to the bed. When> they ask her Dr. he said with her condition any more than> two leaders would> be counter productive.. She has IPF/COPD. If her saturation> is dropping when she tries to move she needs more 02..> When Burch (her hubby) questioned it he was told to do as> he said or find another Doc.... they have had about four> already...> This is just the reason I will not go to a local.. They> think they KNOW it all and know very little about IPF> > Anyhow the point of this post is to ask for prayers for> Alyce today. The morfien has her really groggy until Burch> can't understand her, OH I WANNA SCREAM.. this disease> is HORRRRRIBLE. Might throw in a word for me. I am having a> rough spot with all this.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us> to our feet,> when our wings have trouble remembering how to fly."> > >  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009  Well...I spoke to quickly...sorry. I know nothing about a VPAP or the problems concerning both COPD/PF. I reacted to Peggy's concerns and made an assumption that it was the dr's fault. Sorry group. I will leave what I don't know to those who do know. I thought I was wrong once, but I was mistaken! heheeehe MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Alyce up-date> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, January 21, 2009, 10:27 AM> Hello everyone, My friend Alyce is having a horrible time.> Hospice hasn't been giving her any more that 6L and she> drops really low so now she is confined to the bed. When> they ask her Dr. he said with her condition any more than> two leaders would> be counter productive.. She has IPF/COPD. If her saturation> is dropping when she tries to move she needs more 02..> When Burch (her hubby) questioned it he was told to do as> he said or find another Doc.... they have had about four> already...> This is just the reason I will not go to a local.. They> think they KNOW it all and know very little about IPF> > Anyhow the point of this post is to ask for prayers for> Alyce today. The morfien has her really groggy until Burch> can't understand her, OH I WANNA SCREAM.. this disease> is HORRRRRIBLE. Might throw in a word for me. I am having a> rough spot with all this.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us> to our feet,> when our wings have trouble remembering how to fly."> > >  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 21, 2009 Report Share Posted January 21, 2009  Well...I spoke to quickly...sorry. I know nothing about a VPAP or the problems concerning both COPD/PF. I reacted to Peggy's concerns and made an assumption that it was the dr's fault. Sorry group. I will leave what I don't know to those who do know. I thought I was wrong once, but I was mistaken! heheeehe MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Alyce up-date> To: Breathe-Support@ yahoogroups. com> Date: Wednesday, January 21, 2009, 10:27 AM> Hello everyone, My friend Alyce is having a horrible time.> Hospice hasn't been giving her any more that 6L and she> drops really low so now she is confined to the bed. When> they ask her Dr. he said with her condition any more than> two leaders would> be counter productive.. She has IPF/COPD. If her saturation> is dropping when she tries to move she needs more 02..> When Burch (her hubby) questioned it he was told to do as> he said or find another Doc.... they have had about four> already...> This is just the reason I will not go to a local.. They> think they KNOW it all and know very little about IPF> > Anyhow the point of this post is to ask for prayers for> Alyce today. The morfien has her really groggy until Burch> can't understand her, OH I WANNA SCREAM.. this disease> is HORRRRRIBLE. Might throw in a word for me. I am having a> rough spot with all this.> > > Love & Prayers, Peggy> Florida, IPF/UIP 2004> > "I believe that friends are quiet angels who lift us> to our feet,> when our wings have trouble remembering how to fly."> > >  Quote Link to comment Share on other sites More sharing options...
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