Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Boy did my post cause a avalanche of E-mails. I have 2 pulmonologists, 1 liver specialst, 1 cancer specialist, and a pcp who is intelligent enough to coordinate this team of doctors. I currently don't have a rx for ox because my 6 min walk is 91. My next visit with the pulmo is the end of this mo. Hopefully the immuran will have stabilized my 6min at 91. I have just been put back on immuran. Will have blood tests on the 17th. I think it may be why I've felt so lousy the last couple weeks. Or could I have picked this up mentally from this board. The blood work should tell. I plan to talk seriously to my pcp on why they did too many phlebotomies and I seem to be in a constant anemic state for the last 8 weeks or so. Did I ever tell you I am the worlds greatest procrastinator. I will call the cpap provider soon. Keep prodding me. I meant at night. When you have bad sleep problems day and night seem to blur. Also Vickie has been very sick with flu and or me. I am glad you have a chance to take it easy. Talk to you later.Steve59 from WA IPF 2006 Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: Mama-SherDate: Wed, 9 Apr 2008 11:20:26 -0700 Steve... This post is from yesterday and I'm stunned that a Dr would refuse you an rx for O2 because you would "use it as a crutch and lungs would deteriorate faster"! Someone doesn't know what they are talking about Steve...Dr or no. Do you have a pulmonologist?? If not, go to one soon! A pcp simply does not know enough about a disease which even specialists disagree. If your SATS are below 88-89 you need O2. What you write suggests you have not had a six minute walk for testing....have you had any pulmonary function testing? Using the cpap 2 hrs....do you mean at night? You say 2 hrs a day........sleeping problems are just awful. Have you contacted your O2 provider and asked them for assistance w/cpap so you can sleep? My eye is still swollen/inflamed but no complications. I'm just being more lazy than usual for a few days. Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! Mama-Sher Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Z.... good news that vertigo is less and back is better! I'm so relieved that is doing better as well. I know how quickly babies grow. just like little weeds. Gee, 7 wks old and turning over already. She is a strong baby. Take care! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Mama-Sher Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.9/1365 - Release Date: 4/8/2008 7:30 AM No virus found in this incoming message. Checked by AVG. Version: 7.5.519 / Virus Database: 269.22.10/1367 - Release Date: 4/9/2008 7:10 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Yes Steve...do keep moving toward using the cpap and getting help if needed. If you will be persistent you will benefit and wish you had done it sooner. What trouble do you have w/cpap that you don't use it? Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Mama-Sher Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Beth, You are the best or tied with Bruce, with Mama Sher following close. Bedside manner and all. Actually I do like the mother hens keeping watch on me and others on this board. God knows I would not recommend anything for anyone knowingly or not. I will watch what I write here and try to remember the mother hens keeping track, God Bless Them. Steve59 from WA IPF 2006 Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Re: Mama-SherDate: Wed, 9 Apr 2008 16:08:59 -0700 (PDT) Steve, Thanks for clearing that up. I feel so much better now. You're right Dr. Raghu is indeed one of the foremost experts in our disease on the planet. It will still be good to get your oximeter so that you can monitor yourself during different activities. It would be interesting to find out what your sats are like when your doing something somewhat more strenuous than a 6 minute walk. Again thanks for the clarification, just goes to show what a bunch of worriers we are here. Did you want to have 600 mother hens looking over your shoulder? LOL Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Mama-SherDate: Wed, 09 Apr 2008 04:17:18 -0000 'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete with Torture Chamber Mentality AND IGNORANCE).. .......use O2 as a CRUTCH ......deteriorate faster...... ..what sheer utter NONSENSE.... .get yourself to a decent Specialist.. ..... PRONTO...... . If our Bugle Boy wasn't on the road right now you'd be getting a REALLY DETAILED response from him on THAT one! You NEED O2 if your Sats fall below 90 to keep all your organs in good functioning condition... .BRAIN, HEART....LIVER. ....starving these of O2 is what will cause your WHOLE body to deteriorate faster! OMG I can NOT believe you were advised this! Now of course I must say I am NOT a Doctor & cannot give medical advice BUT....get to some one who CAN! Get a second, more up-to-date, informed Specialist in PF! in OZ in Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 HEY HEY HEY, what am I chopped liver ?????????????????  Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Beth, You are the best or tied with Bruce, with Mama Sher following close.  Bedside manner and all. Actually I do like the mother hens keeping watch on me and others on this board. God knows I would not recommend anything for anyone knowingly or not. I will watch what I write here and try to remember the mother hens keeping track, God Bless Them.Steve59 from WA IPF 2006From: Beth <mbmurtha>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Re: Mama-SherDate: Wed, 9 Apr 2008 16:08:59 -0700 (PDT)Steve,Thanks for clearing that up. I feel so much better now. You're right Dr. Raghu is indeed one of the foremost experts in our disease on the planet.It will still be good to get your oximeter so that you can monitor yourself during different activities. It would be interesting to find out what your sats are like when your doing something somewhat more strenuous than a 6 minute walk.Again thanks for the clarification, just goes to show what a bunch of worriers we are here. Did you want to have 600 mother hens looking over your shoulder? LOL   Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive       Re: Mama-SherDate: Wed, 09 Apr 2008 04:17:18 -0000'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete with Torture Chamber Mentality AND IGNORANCE).. .......use O2 as a CRUTCH ......deteriorate faster...... ..what sheer utter NONSENSE.... .get yourself to a decent Specialist.. ..... PRONTO...... .If our Bugle Boy wasn't on the road right now you'd be getting a REALLYDETAILED response from him on THAT one! You NEED O2 if your Sats fall below 90 to keep all your organs in good functioning condition... .BRAIN, HEART....LIVER. ....starving these of O2 is what will cause your WHOLE body to deteriorate faster!OMG I can NOT believe you were advised this!Now of course I must say I am NOT a Doctor & cannot give medical advice BUT....get to some one who CAN! Get a second, more up-to-date, informed Specialist in PF! in OZ in Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Hi Mama Sher. Yes I have sob, common symptom of IPF. I also have muscle pain which thru my research can be caused by lack of oxygen. My doctors all say I will get ox at 88 six min walk. My oximeter arrives tomorrow via UPS. So I will find out if I am hypochondriac or not. Our bedroom is upstairs and some(most) nights I just gasp for air after climbing those 14 steps. Anyway before we go on cruise I'll have better answers. Also go to counselor on the 17th. Hopefully we click. Will let you know what I feel unless I'm committed. HaHa. Talk to you before then.Steve59 from WA IPF 2006 Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: Re: Mama-SherDate: Wed, 9 Apr 2008 16:31:19 -0700 Steve...yes, that was confusing. I understand sats have to be 88 or below. I understood you to mean you were seeing a pcp. Well you are in good hands it looks like. What is the reason you want to be on O2? Are you sob?? What does Dr. say about that? Thanks for the clarification! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! RE: Re: Mama-Sher Sorry for the confusion. I go to one of the best Pulmonologists in the world. Dr. Ganesh Raghu at the University of Washington. The standard here is if 6 min walk falls to 88, you go on oxygen. My current 6 min walk is 91. Steve59 from WA IPF 2006 From: "" <gina.francisbigpond>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Mama-SherDate: Wed, 09 Apr 2008 04:17:18 -0000 'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete with Torture Chamber Mentality AND IGNORANCE).........use O2 as a CRUTCH ......deteriorate faster........what sheer utter NONSENSE.....get yourself to a decent Specialist....... PRONTO....... If our Bugle Boy wasn't on the road right now you'd be getting a REALLY DETAILED response from him on THAT one! You NEED O2 if your Sats fall below 90 to keep all your organs in good functioning condition....BRAIN, HEART....LIVER.....starving these of O2 is what will cause your WHOLE body to deteriorate faster! OMG I can NOT believe you were advised this! Now of course I must say I am NOT a Doctor & cannot give medical advice BUT....get to some one who CAN! Get a second, more up-to-date, informed Specialist in PF! in OZ in Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Absolutely agree with you Steve...sorry for the confusion I interpreted your meassage as though you were BELOW the 90 mark & your Doc was holding out on you for rather strange reasons....Good to hear that you're still ABOVE the magic mark..at least on the 6 min walk test! in Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Sounds good to me. I bet your 6min walk is in the 80's. I guess I'm a little paranoid thinking when I get on ox it will be 24/7. Steve59 from WA IPF 2006 Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: Re: Mama-SherDate: Wed, 9 Apr 2008 16:42:44 -0700 Steve...most of the time my sats do hold in low 90s unless I'm active. Even so, there are times when I feel I'm not breathing 'easily'...and I use the o2. It helps. Guess I'll have to carry oximeter and O2 with me all the time, in case I'm active and sats fall. I'll have O2 w/me. Sometimes I go out w/o O2 because I know I'm in the car and then in a Drs office and back in the car. Not much activity there. But coming up the stairs can sometimes drop my sats. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! RE: Re: Mama-Sher Once more I have 2 excellent doctors. If Shers oximeter holds in low 90's and her doctor sez she doesn't require ox then I would listen to the doc's. My personal 6 min walk is 91 with 88 being the thresh hold for Ox rx.Steve59 from WA IPF 2006 From: "Tina" <tjnikita>Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Mama-SherDate: Wed, 09 Apr 2008 13:37:18 -0000 Steve, Ditto what has said! Everytime your 02 falls below 90, something in your body is suffering. You need better advice than I can give....I am not a doctor and don't play one on TV either. Lol. I hope you receive the information you need. God Bless,TinaIPF PH Ohio>> > 'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete> with Torture Chamber Mentality AND IGNORANCE).........use O2 as a CRUTCH> ......deteriorate faster........what sheer utter NONSENSE.....get> yourself to a decent Specialist....... PRONTO.......> > If our Bugle Boy wasn't on the road right now you'd be getting a REALLY> DETAILED response from him on THAT one! You NEED O2 if your Sats fall> below 90 to keep all your organs in good functioning condition....BRAIN,> HEART....LIVER.....starving these of O2 is what will cause your WHOLE> body to deteriorate faster!> > OMG I can NOT believe you were advised this!> > Now of course I must say I am NOT a Doctor & cannot give medical advice> BUT....get to some one who CAN! Get a second, more up-to-date, informed> Specialist in PF!> > in OZ> > > > in Oz> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 Mama Sher, It irritates my face when I cinch it tight enough to stop leaks. I'm going through a terrible bout with insomnia and shakiness now so maybe that is contributing. Steve59 from WA IPF 2006 Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: Mama-SherDate: Wed, 9 Apr 2008 18:19:23 -0700 Yes Steve...do keep moving toward using the cpap and getting help if needed. If you will be persistent you will benefit and wish you had done it sooner. What trouble do you have w/cpap that you don't use it? Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Mama-Sher Mama-Sher,How are you doing?Toodles!Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2008 Report Share Posted April 9, 2008 , I took it all as good advice and knew I had confused the group. I am dissapointed however that I didn't get one of your great emoticons. Talk to you later.Steve59 from WA IPF 2006 Reply-To: Breathe-Support To: Breathe-Support Subject: Re: Mama-SherDate: Thu, 10 Apr 2008 02:12:03 -0000 Absolutely agree with you Steve...sorry for the confusion I interpreted your meassage as though you were BELOW the 90 mark & your Doc was holding out on you for rather strange reasons....Good to hear that you're still ABOVE the magic mark..at least on the 6 min walk test! in Oz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Peggy....absolutely not chopped liver.....you're scrambled eggs with the rest of us mama-hens! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Re: Mama-SherDate: Wed, 09 Apr 2008 04:17:18 -0000 'Xuse me Steve BUT your Doctors are living in the Dark Ages (complete with Torture Chamber Mentality AND IGNORANCE).. .......use O2 as a CRUTCH ......deteriorate faster...... ..what sheer utter NONSENSE.... .get yourself to a decent Specialist.. ..... PRONTO...... . If our Bugle Boy wasn't on the road right now you'd be getting a REALLYDETAILED response from him on THAT one! You NEED O2 if your Sats fall below 90 to keep all your organs in good functioning condition... .BRAIN, HEART....LIVER. ....starving these of O2 is what will cause your WHOLE body to deteriorate faster! OMG I can NOT believe you were advised this! Now of course I must say I am NOT a Doctor & cannot give medical advice BUT....get to some one who CAN! Get a second, more up-to-date, informed Specialist in PF! in OZ in Oz Quote Link to comment Share on other sites More sharing options...
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