Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Oh Joyce, I am not going to have the grumpys. I will go hurt somebody at the 02 company if I do. Ask I probably already have them. Believe it or not this puppy keeps me sane. I am going to be thinking of the perfect name for your Queen room. Maybe we should run a contest. I do hope you have the Trans-tracheal done just to give you relief from the hose up the nose. That is if that's what you want. I'm glad the nitro is helping. I know this sounds stupid but exactly where is the pain? In your chest? Lungs?The only pain I have is when I lay down at night my chest hurt quite a bit. I love you and do wish I could do something for you. I would be a captain for you. Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Hi Joyce Had A Echo two weeks ago and the report I just got did not have any reference to Pulmonary pressure so ask the tech to make sure they get reading for it P UIP 8/00Joyce wrote: Peggy., Believe me, this is no Queen room. One of my daughters had this room. She used to say it was so small that she had to go out into the hall to change her mind! The pain that I had was when my 02 would drop down into the 70's and below. It felt like a spiked steel band around my chest, just under my arms....then the pain would spread into my shoulders, neck and ears. Ending with a headache. Doc said it was Angina. The med helped it, but I still have vague pain. He told me to call my cardiologist, which I did, and got no return call. Nice. One of my tests tomorrow is an echocardiagram. Might give some answers. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Oh Joyce, I am not going to have the grumpys. I will go hurt somebody > at the 02 company if I do. Ask I probably already have them. > Believe it or not this puppy keeps me sane.> I am going to be thinking of the perfect name for your Queen room. > Maybe we should run a contest.> > I do hope you have the Trans-tracheal done just to give you relief > from the hose up the nose. That is if that's what you want. I'm glad > the nitro is helping.> > I know this sounds stupid but exactly where is the pain? In your > chest? Lungs?> The only pain I have is when I lay down at night my chest hurt quite > a bit.> > I love you and do wish I could do something for you. I would be a > captain for you.> > > > > Love and Prayers, Peggy> ipf 6/04> > Worry looks around.> Sorry looks back,> Faith looks up.> P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2008 Report Share Posted January 23, 2008 Been on Trecleer a little over a year. Hypertension was 56 last Jan 07 then 48 in July and don't know about this last test. Have to call Doc who read test tomorrow to see if he has the figures to come up with the PH number. I think 24 or below is normal Joyce wrote: Thanks , I will. It has been awhile since I have had one. Not my favorite test. What are you taking for PH and is it working? Hugs, Joyce> >> > Oh Joyce, I am not going to have the grumpys. I will go hurt somebody > > at the 02 company if I do. Ask I probably already have them. > > Believe it or not this puppy keeps me sane.> > I am going to be thinking of the perfect name for your Queen room. > > Maybe we should run a contest.> > > > I do hope you have the Trans-tracheal done just to give you relief > > from the hose up the nose. That is if that's what you want. I'm glad > > the nitro is helping.> > > > I know this sounds stupid but exactly where is the pain? In your > > chest? Lungs?> > The only pain I have is when I lay down at night my chest hurt quite > > a bit.> > > > I love you and do wish I could do something for you. I would be a > > captain for you.> > > > > > > > > > Love and Prayers, Peggy> > ipf 6/04> > > > Worry looks around.> > Sorry looks back,> > Faith looks up.> >> > > > > > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59> > ---------------------------------> Never miss a thing. Make Yahoo your homepage.> P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Amen Brother Bruce!!! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Re: high flow etc. JoyceThey so don't get what you just said. We understand our bodies. I don't know a person in the world who likes going to doctors and just goes for kicks. When we tell a doctor something is wrong it probably is. I even had a psychiatrist include in her notes the term somatization. Somatization disorder is a chronic condition in which there are numerous physical complaints. These complaints can last for years, and result in substantial impairment. The physical symptoms are caused by psychological problems, and no underlying physical problem can be identified. I got extremely angry and slammed the door and left when she didn't think there were physical problems as I was about to go to the doctors.Well, never one time did I go that there wasn't a problem. My counselor always believed there was something not being found. As my new pulmonologist said, "well, it turns out she certainly was right." The funniest thing was when I applied for social security disability, the psychologist reviewing saw the word in the notes that said somatization. She said, how can she write that with the list of all the things you have. The medical doctor reviewing was actually more concerned than mine about some issues and not only included that but encouraged me very strongly to go to UTSW for second opinions.To this date I have never reported a problem and there not been one. I know my body. I know when its right and when something different or new is going on.So does everyone on here. My Primary didn't believe me but one 6 minute walk and he sure did. When it was stomach or esophagus the Upper GI's and Endoscopies always supported. The ear surgery supported an ear problem. The colon resection supported a problem. My confirmed neurological issues supported a problem. As it turns out I was always underreporting, never over. For 18 months I said I just couldn't get enough breath to get started back on a treadmill before the three attacks and my complaints got me a 6 minute walk.Listen to us. The last thing in the world we want is to go to the doctor. The last thing is to have another issue. If we say something is wrong, it is.> > > >> > > > Oh Joyce, I am not going to have the grumpys. I will go hurt> somebody> > > > at the 02 company if I do. Ask I probably already have them.> > > > Believe it or not this puppy keeps me sane.> > > > I am going to be thinking of the perfect name for your Queen room.> > > > Maybe we should run a contest.> > > >> > > > I do hope you have the Trans-tracheal done just to give you relief> > > > from the hose up the nose. That is if that's what you want. I'm> glad> > > > the nitro is helping.> > > >> > > > I know this sounds stupid but exactly where is the pain? In your> > > > chest? Lungs?> > > > The only pain I have is when I lay down at night my chest hurt> quite> > > > a bit.> > > >> > > > I love you and do wish I could do something for you. I would be a> > > > captain for you.> > > >> > > >> > > >> > > >> > > > Love and Prayers, Peggy> > > > ipf 6/04> > > >> > > > Worry looks around.> > > > Sorry looks back,> > > > Faith looks up.> > > >> > >> > >> > >> > >> > >> > >> > > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL> yo 59> > >> > > ------------ --------- --------- ---> > > Never miss a thing. Make Yahoo your homepage.> > >> >> >> >> >> >> >> > P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo> 59> >> > ------------ --------- --------- ---> > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try> it now.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 yes yes , I agree too. Love and Prayers, Peggyipf 6/04Worry looks around.Sorry looks back,Faith looks up. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2008 Report Share Posted January 24, 2008 Hey Joyce....call it the offspital room or the spit-off room. I'm of course being silly...I'm sorry you deal with this all the time. There never is a rest from it is there. I'm glad the nitro is controlling pain. Do you have any idea how far off the Trans-tracheal could be? Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: high flow etc. Peggy, I just walked back from my laundry room to my hospital room/office....we don't know what to call this room.....anyway a distance of about 20 feet and my 02 fell to 67. It is miserable. The doc told me that when it drops like that to sit and rest 30 minutes. How many 30 minutes are in a day??? The long acting nitroglycerin pills are keeping the pain down. The high flow cannula and tubing are quieter. But, you won't like that cannula. I get so grumpy when I am trying to hear something and all I can hear is this gale force wind blowing up my nose. I use my mask at night sometimes and even during the day. As soon, as these docs decide how they want to try and kill me....I want to get the Trans-tracheal done. This new doc is all for it. It would be so wonderful not to have this rubber hose wrapped all over my head. Aaaaargh! I am going tomorrow for all day testing. I got the new HRCT report and it said Idiopathic. I have had so many different names put to this PF. Everytime I do an HRCT or some other scan at a hospital that does not have old records, they name it something else. In the end what does it matter. Sometimes I think if they just clumped all the PF diseases together and put one name to it....maybe it would make more of an impact on the medical world. This report is the first one that said Pulmonary Hypertension. I had a hunch because of the plummeting 02. It said that both coronary arteries were enlarged. I will know more on the 4th of Feb, when I see the Duke Doc again. Peggy, I think you will have the Grumpies, real soon. I see them lurking in your posts. Keep smiling that great smile, they hate smiles. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Gwynne, My saturation doesn't drop nearly like Joyce, and you. > I don't think I could make it. The lowest I have dropped I think is > 83. I felt like an elephant was sitting on me. I guess I am a wimp, > even though I know I have a high pain tolerance I have a low 02 > tolerance. Some days I just feel like a rag. Then I think of all > y'all have been through and I am just amazed. I do have such HEROs to > look up to and learn how to cope with this monster. I Thank everyone > of you for your support and prayers.> > > > Love & Prayers, Peggy> ipf 6/04> > Worry looks around.> Sorry looks back,> Faith looks up.> Quote Link to comment Share on other sites More sharing options...
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