Guest guest Posted April 27, 2009 Report Share Posted April 27, 2009 Lou wish you lived nearby so we could visit often Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 inactive 4/09 www.transplantfund.org--- Subject: Re: Thank you so muchTo: Breathe-Support Date: Friday, April 24, 2009, 8:41 AM Dear Ginny:Thank you for your nice letter. Beth, Peggy and May and a few others have responded to your question about my 20 ltrs. and they know so much more about it than I do. When I first went on Hospice Jan 29, (3 mons) ago, my oxygen needs seemed to be increased pretty rapidly which meant I needed a higher flow. Right now I have a cannula (10 ltr) in the nose, and a face mask too (24/7), 10 each, so that is 30 ltrs. altogether. We have tried to go down on the liters at night and I really feel much better on the 30 total, and right now feel pretty good with that. If it keeps rising, I don'tknow what I will do. PERSISTENT FIGHTER is my nick name in here and it is a good one. Some days I feel more tired than others and I adjust to that by listening very carefully to what my body wants and needs. I have found that also eating lighter meals, smaller meals and more often meals that I feel better. My morphine is now regulated to 2.5 mil every 4 hours and xanax also. I was on too high a dose of morphine, and you really have to be extra careful with that stuff. I would love to see you. I am on Hospice so I can not go outside ever again, but I would be tickled pink if I could meet you and you could come over for lunch or coffee or play scrabble. (still can't beat my nurse, ). We played for 3 hours yesterday and she beat me by 30 points. I just can not beat her. haahahaCan you get out? ............ ......... ......... .I have someone with me 24/7, because things happen so so fast with me that I pretty much have to be monitored. I am not in any pain, can I am now just trying to help all of you loved ones on here in this group as my occupation since I can't go out to work in the community, I can work in this community, right? I would love to meet you if it is at all possible. I have never met another person with IPF yet and it would be so wonderful to have a local friend so we can compare.I LOVE YOU THIS DAYMARY LOU - RICHMOND VA IPF - 02Thanks guys for your input to Ginny for me, you can probably explain it better. love and kisses to you all this day.PERSISTENT FIGHTER is on the warpath against BIG BAD PF.> > >> > > for your responses to my letter to you all yesterday.> > > > > > Today is like a new breath of life being pumped into my veins with oxygen.... the difference is between night and day for communicating and typing too. You were all so sweet (even Bruce) with your responses.> > > > > > I do want to say that head nurse from Hospice was around this morning on one of her twice weekly stops and Earl had asked her about the dentist coming to the homes to do work. She said no, they can't do that. My dentist works about 3 houses down from here, but I am sure the insurance company that insures him and his business would not allow that to happen. Too much risk. Don't need him right now anyhow. I am talking Hospice here now. Hope my teeth behave themselves.> > > > > > Masks are working out pretty well and had a good nights sleep with one mask, no cannulas, and 20 ltrs. When I am in a period of sedation, the 20 ltrs seems to work out ok, but then when talking, then have to switch to the 30 cannulas.> > > > > > > > > Will write more later.> > > > > > I HOPE YOU ALL ARE FEELING WELL AND FEELING BETTER TODAY. SUN IS SHINNING BRIGHTLY AND MOOD IS MELLOW. LET ME SEE IF I CAN FIND SOME FUNNY STUFF TO SEND YOU LATER, K?> > > > > > I LOVE YOU THIS DAY!> > > MARY LOU RICHMOND VA> > > IPF - 02> > >> >> Quote Link to comment Share on other sites More sharing options...
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