Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Steve... maybe there is a place for we mother-hens here on our site! Isn't MB something else? What an absolutely sweet thing she wrote to me this morning. The first post I read BTW! Steve, you have a lot you can share ("recommend" if you will) with others! Our own experiences are valuable to someone on the board. I have that SOB too and so many have it way worse! Stairs do me in too. We live in an upstairs apt and I go out very little. We've been waiting 3 years for a downstairs to open up....now we are beginning to look for an apt closer to Lysa. She is about 30 miles away. I hope you will love a cruise as much as I did. Places to sit all along any direction. Is this your first? I've been on only one...with my daughter, Lysa. I'd go again anytime but Rich does not like water and refuses to go....I'll sure miss him...hheeehehe. >>>>I told him if he didn't quit playing golf I'd leave him. He said he sure would miss me. haaahahaa>>>>> I too hope you click with counselor. It's a whole lot easier if you're not "bristly" 'cause you really don't like him/her. You, committed? Naaa. They never throw the baby out with the bath water... Even the hateful counselors. I'm glad I bought the oximeter...can't beat $65... I'm frequently surprised when I'm really SOB and yet my SATS are in the low 90s. I know the two are not necessarily connected. Pulmonologist told me I'm SOB because I have a lung disease! Well, if it turns out you do need O2, 24/7 then be glad you found out. I feel so much better since I've been on O2. .....Do you perhaps need a new face mask or a different type? Watch for it, here it comes..... Call your O2 provider...they will help you w/mask problems. Go ahead....go call! Is the shakiness from meds??? BTW, I hope I didn't offend you when I critized what I "thought" the Dr. said to you about "no oxygen"...... It's certainly obvious you are in good hands! Hello to Vickie. 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 10, 2008 Report Share Posted April 10, 2008 Mama Cher, Yes, MB is very sharp and , seems to get to the point and clarify. Yes this is my first cruise, I always thought they were for old people. And I guess now I are one. HAHa I traveled to Mexico and swam and snorkeled for years. I keep asking both my pulmonologists about snorkeling and they smile and say no way . My oximeter just came, I haven't even opened the box yet.As for the face mask it is full face and I might try a nose only now that I know what they are about. the shakiness and beginning dementia(confusion) are just being investigated now. One doctor suggested a as yet undiagnosed autoimmune disease. I have even heard the word Parkinson's mentioned. What all the doctors agee on is the need for more testing. What a suprise! Do I come across as bristly in my replies to this group. I am really very easy going and fairly thick skinned and very slow to feel offended. I am a realist and sometimes it makes me seem abrubt and to the point. With Vickie being so sick with the stomach flu, I have lost my driver but will still check on a different style mask soon. Steve59 from WA IPF 2006 Reply-To: Breathe-Support To: <Breathe-Support >Subject: Re: Re: Mama-Sher/ SteveDate: Thu, 10 Apr 2008 10:38:41 -0700 Steve... maybe there is a place for we mother-hens here on our site! Isn't MB something else? What an absolutely sweet thing she wrote to me this morning. The first post I read BTW! Steve, you have a lot you can share ("recommend" if you will) with others! Our own experiences are valuable to someone on the board. I have that SOB too and so many have it way worse! Stairs do me in too. We live in an upstairs apt and I go out very little. We've been waiting 3 years for a downstairs to open up....now we are beginning to look for an apt closer to Lysa. She is about 30 miles away. I hope you will love a cruise as much as I did. Places to sit all along any direction. Is this your first? I've been on only one...with my daughter, Lysa. I'd go again anytime but Rich does not like water and refuses to go....I'll sure miss him...hheeehehe. >>>>I told him if he didn't quit playing golf I'd leave him. He said he sure would miss me. haaahahaa>>>>> I too hope you click with counselor. It's a whole lot easier if you're not "bristly" 'cause you really don't like him/her. You, committed? Naaa. They never throw the baby out with the bath water... Even the hateful counselors. I'm glad I bought the oximeter...can't beat $65... I'm frequently surprised when I'm really SOB and yet my SATS are in the low 90s. I know the two are not necessarily connected. Pulmonologist told me I'm SOB because I have a lung disease! Well, if it turns out you do need O2, 24/7 then be glad you found out. I feel so much better since I've been on O2. .....Do you perhaps need a new face mask or a different type? Watch for it, here it comes..... Call your O2 provider...they will help you w/mask problems. Go ahead....go call! Is the shakiness from meds??? BTW, I hope I didn't offend you when I critized what I "thought" the Dr. said to you about "no oxygen"...... It's certainly obvious you are in good hands! Hello to Vickie. 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 ><< 3_11_11.gif >> ><< 36_1_11.gif >> ><< sig.jsp_pc_ZSzeb095_pp_ZSYYYYYYYYUS >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2008 Report Share Posted April 10, 2008 Steve....hey, re-read my post...the "bristly" is in reference to you maybe not clicking w/your counselor. No. You certainly do not come across as bristly on the board! I really understand the beginning 'dementia'....I have a lot of problems with forgetfulness and get confused easily. Again, like yourself, I am a realist and pragmatic. I know I'm direct and to the point as well. Sorry Vickie has that darn flu. I've heard of some being really sick. 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 ><< 3_11_11.gif >> ><< 36_1_11.gif >> ><< sig.jsp_pc_ZSzeb095_pp_ZSYYYYYYYYUS >> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.