Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Dearest Gwynne, I'm so sad to hear of your slide....if hoping could make a difference your lungs are Sooooo close by! When you're alone in the night & feeling so alone IMAGINE each of our faces & voices & know that we're with you in spirit....>> > You Guys,> My doctor restarted me on CellCept last Friday.> I'm not feeling so great... tummy troubles. Same> thing happened last time I started it, but I> remember it didn't last long. Hope the same applies> this time.> > I've definitely gotten worse in the past week. My> p.t. came today and I could only do one lap and> only half the time on the recumbent bike, and that> was struggling. My San nurse told me today> that twice lately they thought they had a lung for me,> but it wasn't meant to be. I'm at the point now that> turning in bed causes my sats to drop, and I have> to raise my liter flow to talk. 15L with exertion> doesn't even do the trick anymore most of the> time. I'm fighting for my life. I'm more afraid that> my worldly journey may not lead to transplant before> I succumb to this disease. However, I will keep> fighting IPF until my last breath. It would be easier if> the insurance industry and some of the healthcare> profession didn't seem to want to decide for me> how my quality of life should be defined.> Fortunately, my doctors are compassionate people,> but in the small hours of the night we walk this> walk alone. At least my God walks beside me --> this would be far too dark a place without Him.> > Joyce,> I thank God that you were able to go to church> last weekend. What a blessing. I hope to go to my> church class this Thursday morning, but we'll see.> > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> 2/08 Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Gwynne, You are my role model. I admire the gracefulness that you exhibit, even in the face of despair. I identify with you. I really do know your pain and frustration. We are so much alike in our determination to live. I get up in the morning with a new determination every day. I dread the day when the zeal for life is gone. I, too, am getting more and more helpless and I rage against that. The prayer posted by Ginger in the last week said exactly what I feel. "I am angry that it has made me dependant and at the mercy of others" could have spilled from my lips. Retaining dignity and some degree of control is important to me. But, as wrote, "vanity, all is vanity." Keep trying, Gwynne. Every day is a victory. Every day is new hope. 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 >> > You Guys,> My doctor restarted me on CellCept last Friday.> I'm not feeling so great... tummy troubles. Same> thing happened last time I started it, but I> remember it didn't last long. Hope the same applies> this time.> > I've definitely gotten worse in the past week. My> p.t. came today and I could only do one lap and> only half the time on the recumbent bike, and that> was struggling. My San nurse told me today> that twice lately they thought they had a lung for me,> but it wasn't meant to be. I'm at the point now that> turning in bed causes my sats to drop, and I have> to raise my liter flow to talk. 15L with exertion> doesn't even do the trick anymore most of the> time. I'm fighting for my life. I'm more afraid that> my worldly journey may not lead to transplant before> I succumb to this disease. However, I will keep> fighting IPF until my last breath. It would be easier if> the insurance industry and some of the healthcare> profession didn't seem to want to decide for me> how my quality of life should be defined.> Fortunately, my doctors are compassionate people,> but in the small hours of the night we walk this> walk alone. At least my God walks beside me --> this would be far too dark a place without Him.> > Joyce,> I thank God that you were able to go to church> last weekend. What a blessing. I hope to go to my> church class this Thursday morning, but we'll see.> > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> 2/08 Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 (((Gwynne))) I'm so glad you keep fighting, what a wonderful spirit you have. You are an inspiration I hope your tummy feels better soon Sending you much love and strength and a pair of boxing gloves to knock this ol' disease out Love Ze xxx>> > You Guys,> My doctor restarted me on CellCept last Friday.> I'm not feeling so great... tummy troubles. Same> thing happened last time I started it, but I> remember it didn't last long. Hope the same applies> this time.> > I've definitely gotten worse in the past week. My> p.t. came today and I could only do one lap and> only half the time on the recumbent bike, and that> was struggling. My San nurse told me today> that twice lately they thought they had a lung for me,> but it wasn't meant to be. I'm at the point now that> turning in bed causes my sats to drop, and I have> to raise my liter flow to talk. 15L with exertion> doesn't even do the trick anymore most of the> time. I'm fighting for my life. I'm more afraid that> my worldly journey may not lead to transplant before> I succumb to this disease. However, I will keep> fighting IPF until my last breath. It would be easier if> the insurance industry and some of the healthcare> profession didn't seem to want to decide for me> how my quality of life should be defined.> Fortunately, my doctors are compassionate people,> but in the small hours of the night we walk this> walk alone. At least my God walks beside me --> this would be far too dark a place without Him.> > Joyce,> I thank God that you were able to go to church> last weekend. What a blessing. I hope to go to my> church class this Thursday morning, but we'll see.> > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> 2/08 Texas> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Gwynne, Just wanted to let you know you are in my thoughts and prayers. I think of you often and you never fail to inspire me. Don't ever underestimate the effect your courage and dignity have on the rest of us. Remember how much you are loved and respected! Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." fighting to live You Guys,My doctor restarted me on CellCept last Friday.I'm not feeling so great... tummy troubles. Samething happened last time I started it, but Iremember it didn't last long. Hope the same appliesthis time.I've definitely gotten worse in the past week. Myp.t. came today and I could only do one lap andonly half the time on the recumbent bike, and thatwas struggling. My San nurse told me todaythat twice lately they thought they had a lung for me,but it wasn't meant to be. I'm at the point now thatturning in bed causes my sats to drop, and I haveto raise my liter flow to talk. 15L with exertiondoesn't even do the trick anymore most of thetime. I'm fighting for my life. I'm more afraid thatmy worldly journey may not lead to transplant beforeI succumb to this disease. However, I will keepfighting IPF until my last breath. It would be easier ifthe insurance industry and some of the healthcareprofession didn't seem to want to decide for mehow my quality of life should be defined.Fortunately, my doctors are compassionate people,but in the small hours of the night we walk thiswalk alone. At least my God walks beside me --this would be far too dark a place without Him.Joyce,I thank God that you were able to go to churchlast weekend. What a blessing. I hope to go to mychurch class this Thursday morning, but we'll see.Gwynne 56 IPF 7/04 listed for transplant 3/07 and2/08 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 I hope the CellCept tummy troubles go away quickly. But far more I hope and pray for your lung or lungs. I know nothing more to say other than that and to remind everyone here of the imperative of encouraging more organ donation. I know it would probably have no chance, but I wish a law could be passed making organ donation the default unless you exempted out and that was shown on your license. I'm sure there would be the fight over rights but if we are subject to telemarketing without registering on a " do not call " list, certainly something as life saving as organ donation could be the same. On another site I went back recently and read the post a while back of a young girl who got lungs from a 16 year old accident victim. With his lungs she walked down the aisle to accept his high school diploma and has formed such a bond with his family. Gwynne, I know your friends have formed a group to crusade for organ donation and that you would never on your own give a contact here, so I'm asking for you to post one, a way to reach and contribute to their effort please. > > > You Guys, > My doctor restarted me on CellCept last Friday. > I'm not feeling so great... tummy troubles. Same > thing happened last time I started it, but I > remember it didn't last long. Hope the same applies > this time. > > I've definitely gotten worse in the past week. My > p.t. came today and I could only do one lap and > only half the time on the recumbent bike, and that > was struggling. My San nurse told me today > that twice lately they thought they had a lung for me, > but it wasn't meant to be. I'm at the point now that > turning in bed causes my sats to drop, and I have > to raise my liter flow to talk. 15L with exertion > doesn't even do the trick anymore most of the > time. I'm fighting for my life. I'm more afraid that > my worldly journey may not lead to transplant before > I succumb to this disease. However, I will keep > fighting IPF until my last breath. It would be easier if > the insurance industry and some of the healthcare > profession didn't seem to want to decide for me > how my quality of life should be defined. > Fortunately, my doctors are compassionate people, > but in the small hours of the night we walk this > walk alone. At least my God walks beside me -- > this would be far too dark a place without Him. > > Joyce, > I thank God that you were able to go to church > last weekend. What a blessing. I hope to go to my > church class this Thursday morning, but we'll see. > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and > 2/08 Texas > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Gwynnie... I'm saddened to hear you think are worse in this past week. I am glad you have experience w/CellCept and know the side effects pass... You have to be worn out in fighting for your life. That takes so much energy. Physically, mentally and emotionally. You don't write about family with you or friends...are you going through this alone? Is there someone close to you who can spend a night with you? I know, things seem worse in the dark In the middle of the night the mental monsters come out and scream at us. If I could do something I would. I feel so damn helpless. I send you warm hugs though! Mama-Sher, age 69. IPF 3-06, OR. Don't fret about tomorrow, God is already there! fighting to live You Guys,My doctor restarted me on CellCept last Friday.I'm not feeling so great... tummy troubles. Samething happened last time I started it, but Iremember it didn't last long. Hope the same appliesthis time.I've definitely gotten worse in the past week. Myp.t. came today and I could only do one lap andonly half the time on the recumbent bike, and thatwas struggling. My San nurse told me todaythat twice lately they thought they had a lung for me,but it wasn't meant to be. I'm at the point now thatturning in bed causes my sats to drop, and I haveto raise my liter flow to talk. 15L with exertiondoesn't even do the trick anymore most of thetime. I'm fighting for my life. I'm more afraid thatmy worldly journey may not lead to transplant beforeI succumb to this disease. However, I will keepfighting IPF until my last breath. It would be easier ifthe insurance industry and some of the healthcareprofession didn't seem to want to decide for mehow my quality of life should be defined.Fortunately, my doctors are compassionate people,but in the small hours of the night we walk thiswalk alone. At least my God walks beside me --this would be far too dark a place without Him.Joyce,I thank God that you were able to go to churchlast weekend. What a blessing. I hope to go to mychurch class this Thursday morning, but we'll see.Gwynne 56 IPF 7/04 listed for transplant 3/07 and2/08 Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 18, 2008 Report Share Posted March 18, 2008 Dearest Gwynne, Just reposting my reply to your Post ...it came up straight after you had posted. I'd hate to think you didn't see it.. I went to bed thinking of you....I often carry one or other of you off to dream-time with me....that's how I DO my spirit work! Gwynne, you surely ARE a strong woman but in need of as much support as the rest of us. I often feel USELESS on this Board & here's something TOTALLY stupid but I'm gunna blurt it out anyway....not SICK ENOUGH to deserve being here among you! I'm NOT threatened by knowing ahead of time what's in store for me BUT I'm cowed into Silence at the magnitude of what some of you contend with in your daily lives. I can only store up your various approaches & experiences & hope that when my turn comes I can be as wonderful a support to others as you all have been to me & other 'newbies'. Rest assured You are Much loved & appreciated & FELT by this Scilly woman in Oz, > >> >> > You Guys,> > My doctor restarted me on CellCept last Friday.> > I'm not feeling so great... tummy troubles. Same> > thing happened last time I started it, but I> > remember it didn't last long. Hope the same applies> > this time.> >> > I've definitely gotten worse in the past week. My> > p.t. came today and I could only do one lap and> > only half the time on the recumbent bike, and that> > was struggling. My San nurse told me today> > that twice lately they thought they had a lung for me,> > but it wasn't meant to be. I'm at the point now that> > turning in bed causes my sats to drop, and I have> > to raise my liter flow to talk. 15L with exertion> > doesn't even do the trick anymore most of the> > time. I'm fighting for my life. I'm more afraid that> > my worldly journey may not lead to transplant before> > I succumb to this disease. However, I will keep> > fighting IPF until my last breath. It would be easier if> > the insurance industry and some of the healthcare> > profession didn't seem to want to decide for me> > how my quality of life should be defined.> > Fortunately, my doctors are compassionate people,> > but in the small hours of the night we walk this> > walk alone. At least my God walks beside me --> > this would be far too dark a place without Him.> >> > Joyce,> > I thank God that you were able to go to church> > last weekend. What a blessing. I hope to go to my> > church class this Thursday morning, but we'll see.> >> > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> > 2/08 Texas> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 , Don't you even think of leaving this board! Not sick enough??? Share the joy of that with us. You make us dream and you make us giggle. We need you! 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 > > >> > >> > > You Guys,> > > My doctor restarted me on CellCept last Friday.> > > I'm not feeling so great... tummy troubles. Same> > > thing happened last time I started it, but I> > > remember it didn't last long. Hope the same applies> > > this time.> > >> > > I've definitely gotten worse in the past week. My> > > p.t. came today and I could only do one lap and> > > only half the time on the recumbent bike, and that> > > was struggling. My San nurse told me today> > > that twice lately they thought they had a lung for me,> > > but it wasn't meant to be. I'm at the point now that> > > turning in bed causes my sats to drop, and I have> > > to raise my liter flow to talk. 15L with exertion> > > doesn't even do the trick anymore most of the> > > time. I'm fighting for my life. I'm more afraid that> > > my worldly journey may not lead to transplant before> > > I succumb to this disease. However, I will keep> > > fighting IPF until my last breath. It would be easier if> > > the insurance industry and some of the healthcare> > > profession didn't seem to want to decide for me> > > how my quality of life should be defined.> > > Fortunately, my doctors are compassionate people,> > > but in the small hours of the night we walk this> > > walk alone. At least my God walks beside me --> > > this would be far too dark a place without Him.> > >> > > Joyce,> > > I thank God that you were able to go to church> > > last weekend. What a blessing. I hope to go to my> > > church class this Thursday morning, but we'll see.> > >> > > Gwynne 56 IPF 7/04 listed for transplant 3/07 and> > > 2/08 Texas> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2008 Report Share Posted March 19, 2008 Gwynne, I am just catching up since I have had company and haven't had the chance to get to my puter. Oh to be able to hold you and tell you things will get better and that God is indeed walking every step with you. I have still been praying for that phone to ring but even more that you will have peace of mind and not suffer. When I wake up at 3: or 4:AM I always think that is the time God wants a quite prayer from me. You are always there. Hold on friend hold on. Love and Prayers, Peggy Florida, ipf 6/04 Worry looks around. Sorry looks back, Faith looks up. You Guys, My doctor restarted me on CellCept last Friday. I'm not feeling so great... tummy troubles. Same thing happened last time I started it, but I remember it didn't last long. Hope the same applies this time. I've definitely gotten worse in the past week. My p.t. came today and I could only do one lap and only half the time on the recumbent bike, and that was struggling. My San nurse told me today that twice lately they thought they had a lung for me, but it wasn't meant to be. I'm at the point now that turning in bed causes my sats to drop, and I have to raise my liter flow to talk. 15L with exertion doesn't even do the trick anymore most of the time. I'm fighting for my life. I'm more afraid that my worldly journey may not lead to transplant before I succumb to this disease. However, I will keep fighting IPF until my last breath. It would be easier if the insurance industry and some of the healthcare profession didn't seem to want to decide for me how my quality of life should be defined. Fortunately, my doctors are compassionate people, but in the small hours of the night we walk this walk alone. At least my God walks beside me -- this would be far too dark a place without Him. Joyce, I thank God that you were able to go to church last weekend. What a blessing. I hope to go to my church class this Thursday morning, but we'll see. Gwynne 56 IPF 7/04 listed for transplant 3/07 and 2/08 Texas Quote Link to comment Share on other sites More sharing options...
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