Joyce

[Guest guest]

HI, how goes it today? Does the new pic line make things a littler or safer? I do hope you are doing better.much love.   me. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Jim,Do you use Ambien?  People using it sometimes experience strange episodes of behavior in the night.Tell your sweet wife to RUN AWAY, RUN AWAY. I hope that some of your professional friends can get to the bottom of this. Hugs, Joyce D.Pulmonary Fibrosis 1997    Bronchiectasis 2004    Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc)  Rejected for Transplant 2006 .....I will not forget you.  Behold, I have engraved you on the palm of my hands.  Isaiah 49: 15-16>> On second thought......the longer I think about this and consult with the pros I'm becoming certain that this is not an oxygen issue.....I actually wish it was. The problem is that I'm having violent dreams, thrashing around in bed and really putting Eva in danger. Started about a year ago but it was infrequent......maybe once a month or less. I'd start moaning, and twitching, then start throwing punchs. I never remember throwing the punch, don't remember the dreams, but I do vaguely remember being in a fight. I actually hit Eva on the shoulder a few months ago, hurt her, bruised her........then this past Friday night began 3 nights of this crap.....Fri nite I squeezed her arm so hard that my handprint is still there today. Sat nite I hit her on the top of the head. Sunday nite I punched the head of the bed and damned near broke my hand. So....some of you are wondering why the hell she puts up with it.....why doesn't she kick me out of bed.....it's just not that simple,> this is an extraordinary woman. However I am sleeping in another bed until this gets sorted out. Sunday I was a mess......I've worked mental health for 22 years and there are a couple PhD clinicians here that are excellent. Got together with them and an MD on Sunday. Got a full physical yesterday. They don't know...........they believe it has nothing to do with Eva but simply depends on which side on laying on at the time. Left side....she gets it, right side it's the head of the bed, a gun case (what? guns in the room with this moron??) a bedside stand one time. We went back to when I finished cancer treatment and morphed into the IPF. I had lots of horrible nightmares, recurring nightmares about death, me dying, my funeral, violent scenarios. I got "shrunk" at the time. Really a no brainer......I was seething with rage about what was happening to me and awake I could keep a lid on it, asleep .......out it came. As I adjusted to the diagnosis they subsided. Now> this........this is really long winded.....the docs theorize that either it's low sats, causing momentary panic, triggering a dream, etc, etc. or low blood sugar. Eva says they usually happen around 2:30 or 3am, likely when I'm coming out of the first, and deepest sleep on the way to the 1st REM. Well I was still up at 2am, stuck my finger....89...not low blood sugar. Also I wore the O2 hose all night, which I don't ordinarily do. I know, I know....I've read you folks talking about what your sats do at night, but I sleep great.....figured it must be okay. At 5am, while sucking the hose I did my twitch, moan dance. No pinchs, but it was discouraging......sats were good. Tonight we have a machine from inpatient at the hosp that monitors, records and prints my sats all night. So, I'll sleep with no hose and we'll see..........jeez.....is there a question there????? Does this ring any bells for anyone? I don't suffer apnea. The next step is into Anchorage for a sleep study.> I know many of you have had sleep studies. Have these been related to apnea or some other sleep disturbance? The sleep study is not without problems. First, how do I know I can perform for them? Will I have to stay there until I do?> > Hey Bruce Buddy.....I'm countin' on you here..........this has to be resolved. Separate beds will protect Eva but my hands can take only so many wall strikes. I should say.......I am not a violent man, 2 actual physical fights in 63 years. So this violent stuff is out of character. Especially now, when retirement has made such a change in my stress level, my disease has been stable for 8 months, maybe a year. > > Now that I've told my life story.......5'10", 200, brn, brn, bat left handed . I sure hope someone has an idea.. Ah yes........almost forgot....did any of you experience symptoms during sleep, other than apnea, as a result of low sats......I know....If I'm asleep how would I know? You know what I mean.........thanx ahead of time.....> > jim IPF 05> alaska > > > ---------------------------------> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.>

[Guest guest]

Joyce,

The experiences you have had should not happen to any living being. Even a wolverine is deserving of better than you got. The idea that this general surgeon had the gall to question your fortitude and ability to "tolerate" surgery based on his barbaric behavior is absolutely infuriating. He and the anesthesiologist should be tarred, feathered and run out of the medical profession. My sister the OB/GYN was horrified by your experience. Her comment was, 'This is why people don't trust doctors'. Then she looked me in the eye and asked me if I understood why she insists on choosing the doctors I see at Duke.

I'm just glad you're home and feeling better. The soreness will get better and your reaction to the lack of prednisone will resolve quickly too. What's wonderful and amazing is how well the Flolan is working for you and honestly how well you're tolerating it. It's such a thrill to see you recuperating the way you are.

You may not feel you're a hero but you are an inspiration to the rest of us and we love you!

Beth

Age 48 Fibrotic NSIP 06/06

Change everything. Love and Forgive