Guest guest Posted March 12, 2008 Report Share Posted March 12, 2008 Hello, Marilyn Welcome although we're sorry of the circumstances bringing you here. The moderators are Leanne and Joyce, although the forum is very open with little moderation required. We are all here to help and assist. Also there is another forum, http://health.groups.yahoo.com/group/Breathe-SupportCaregivers/ These are both supported by the Pulmonary Fibrosis Foundation. Their web site is www.pulmonaryfibrosis.org . Not much going on here at this time of night, but feel free just to start with some of your questions, some information on your father, and anything else you want to say. We'll respond when we're awake and get an open communication going. We have no magic cures unfortunately, but we do have love and compassion and we're active in making the most of life with PF. Peggy, I know, will welcome the chance to chat with you. However, she does have some medical appointments on Wednesday so may take some time to respond. So, just say what you want to. We understand at first you don't know what to say. It's a bit overwhelming and there is so much to learn. But, just let it out and we'll take it from there. > >> >> > Joyce,> >> > There is a poem that I have always loved called "Do Not go Gentle> > into that Good Night" where a son begs his father to rage, scream,> > fight against dying and give it his all to live. Each time I read> > your posts I think of that poem and I wonder if you can even begin to> > know how many of us you bless, encourage, give hope to because of> > your refusal to go gentle into the night. Each day you force> > yourself to go on, against the pain, the discoragement, the endless> > meds and lack of sleep and strength, you send a message to your> > children and grandchildren and most of all Lucien that they are worth> > all of this, that you love them enough to put up with all of this,> > for as long as necessary, for one more memory, one more hug, one more> > smile. . .> >> >> > You wrote once that you were unsure why we hailed you as our hero,> > that you had done nothing to earn our respect, just had put one foot> > in front of the other each day. But thats what true heros do, they> > keep walking one step at a time, one foot in front of the other- to> > the top of the mountain even when their bodies are exhausted and> > their feet are blistered, to the burning building where someone is> > yelling for help even knowing they may be hurt, to treacherous> > waters, over finish lines, into unsafe places-one step at a time.> >> >> > Each day you take that step, against all odds, against all reason,> > each one of us holds another hope in our heart that we too can do> > it , we too can beat our prognosis and diagnosis and make it one step> > at a time. I see us like the verizon commerical-there you are in> > front of the crowd saying 'can you hear me now?' and our ever growing> > air family is right behind you, growing in numbers,getting stronger ,> > going more places, holding on to the hope. Imagine it in your head> > and heart, a whole throng of people are behind you now, praying for> > you, walking with you, holding you fast in our hearts. And yes, dear> > Joyce, beloved friend, we hear you.> >> >> > Sarcoid/PF 3/2006 California> >> >> > Praying for Patience> >> >> > First of all, I am not looking for sympathy.... especially from you> > brave people. I just woke up this morning and felt like I needed to> > unload some of this frustration. I know that I should not groan and> > moan to others whose pain and suffering may well exceed mine.> >> > I also need to preface whatever I say with the fact that I know that> > the years I have enjoyed since diagnosis and prognosis have been a> > gift from God and I am so grateful.> >> > It is just that I am getting so exhausted by this excessive effort to> > LIVE. My entire existence now is centered on medical care. It is> > more than a full time job to simply get through the day. It is also> > a full time job for all the people who love me and help take care of> > me. I can no longer drive, have not even been to a store in weeks,> > can not go to church, can't cook in my own kitchen, can't clean up my> > house, can't lift my 4 year old grandkids onto my lap and it is even> > getting difficult for me to concentrate and hold thoughts long enough> > to read. I go back and read the same pages over and over.> >> > I have taken truck loads of medicine. Right now, I take 19> > prescription drugs and several OTC meds. My frustration lies in the> > fact that I am only getting worse. I was really counting on this> > Flolan infusion to make a difference. The docs tell me to be patient> > and give it time. I only want to see a brief sign that it is> > working. My husband and I spend an hour a day preparing the> > medication (which has to be done in a completely sterile> > environment. ..clean clothes, scrubbing like a surgeon, swabbing down> > working area with alcohol, etc). We have to set the computerized> > pumps, which are tricky. I have to carry the bag (about the size of> > a Helios and about the same weight) all the time. The picc line> > sight requires a total sterile dressing change, lines have to be> > flushed daily and tubing primed and replaced three times a week. It> > is all very time consuming. We do this in the evening after he has> > worked all day and I am at my worst as far as energy and> > concentration is concerned. We just dread the ordeal.> >> > All I ask from all of this is that there would be some vague sign of> > improvement. But the plummeting saturation still occurs. Going as> > low as 27. The Angina is worse. No energy except for this> > restlessness caused by prednisone.> >> > They told me when they placed the picc line in my arm that it would> > be moved to my chest (right under the collar bone) in about 4 weeks.> > Now, he is putting it off, which leads me to believe that it is not> > working and he knows it. He said they would add other drugs to it if> > I don't show improvement soon.> >> > All I want is some slight reward for all this misery. Instead I have> > contracted a nasty cold, which is the last thing I need.> >> > I ask that you pray (and I know that you do) for me to have patience> > and courage. I hate this feeling of hoplessness. I have such good> > friends. My bestest friend and her hubby came yesturday morning to> > take me for bloodwork. Another friend came and brought lunch and> > visited. My middle daughter is living here now (temporarily) with> > her brood of kids. She has been a wonderful caregiver, along with my> > 18 year old grandson. A friend is bringing our supper today. God> > sees to my needs.> >> > I try not to complain, but this morning looking at the day ahead I am> > discouraged. I only ask for an ounce of improvement, a sign that> > this treatment is having some effect, that all this work is not in > vain.> >> > Thanks for listening, thanks for caring and forgive me for whining.> >> > 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> >> >> >> >> >> > Be a better friend, newshound, and know-it-all with Yahoo! Mobile.> > Try it now.> >> > > > > > ____________________________________________________________________________________> Be a better friend, newshound, and > know-it-all with Yahoo! Mobile. Try it now. http://mobile.yahoo.com/;_ylt=Ahu06i62sR8HDtDypao8Wcj9tAcJ> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 13, 2008 Report Share Posted March 13, 2008 Hi Marilyn, Sorry I didn't get back with you more quickly but it has been a bit hectic this past week. Anyhow No, I am not a moderator but I have been here for quite a while. You don't need a moderator to give you support. There is a site if you go to PFF home page then to Links you'll find Breathe-Support Care givers. However you are welcome to ask questions and I or another member will try to answer from a patients point of view. But be sure to try the Care Givers site. There is also a Breathe-Support Grief site listed incase anyone else needs that. God Bless you in your struggle with the monster. I don't know how long your Dad has had this diagnosis but it doesn't have to mean life is over. We all do our best to make each day a good and meaningful one. Make memories, they will be important. Love and Prayers, Peggy Florida, ipf 6/04 Worry looks around. Sorry looks back, Faith looks up. Hi Peggy. My name is Marilyn and my father has IPF. Im not sure if you are one of the moderators of this group but i was looking to start to get some support. please respond if you can chat with me. Thank you! Praying for Patience > > > First of all, I am not looking for sympathy.... especially from you > brave people. I just woke up this morning and felt like I needed to > unload some of this frustration. I know that I should not groan and > moan to others whose pain and suffering may well exceed mine. > > I also need to preface whatever I say with the fact that I know that > the years I have enjoyed since diagnosis and prognosis have been a > gift from God and I am so grateful. > > It is just that I am getting so exhausted by this excessive effort to > LIVE. My entire existence now is centered on medical care. It is > more than a full time job to simply get through the day. It is also > a full time job for all the people who love me and help take care of > me. I can no longer drive, have not even been to a store in weeks, > can not go to church, can't cook in my own kitchen, can't clean up my > house, can't lift my 4 year old grandkids onto my lap and it is even > getting difficult for me to concentrate and hold thoughts long enough > to read. I go back and read the same pages over and over. > > I have taken truck loads of medicine. Right now, I take 19 > prescription drugs and several OTC meds. My frustration lies in the > fact that I am only getting worse. I was really counting on this > Flolan infusion to make a difference. The docs tell me to be patient > and give it time. I only want to see a brief sign that it is > working. My husband and I spend an hour a day preparing the > medication (which has to be done in a completely sterile > environment. ..clean clothes, scrubbing like a surgeon, swabbing down > working area with alcohol, etc). We have to set the computerized > pumps, which are tricky. I have to carry the bag (about the size of > a Helios and about the same weight) all the time. The picc line > sight requires a total sterile dressing change, lines have to be > flushed daily and tubing primed and replaced three times a week. It > is all very time consuming. We do this in the evening after he has > worked all day and I am at my worst as far as energy and > concentration is concerned. We just dread the ordeal. > > All I ask from all of this is that there would be some vague sign of > improvement. But the plummeting saturation still occurs. Going as > low as 27. The Angina is worse. No energy except for this > restlessness caused by prednisone. > > They told me when they placed the picc line in my arm that it would > be moved to my chest (right under the collar bone) in about 4 weeks. > Now, he is putting it off, which leads me to believe that it is not > working and he knows it. He said they would add other drugs to it if > I don't show improvement soon. > > All I want is some slight reward for all this misery. Instead I have > contracted a nasty cold, which is the last thing I need. > > I ask that you pray (and I know that you do) for me to have patience > and courage. I hate this feeling of hoplessness. I have such good > friends. My bestest friend and her hubby came yesturday morning to > take me for bloodwork. Another friend came and brought lunch and > visited. My middle daughter is living here now (temporarily) with > her brood of kids. She has been a wonderful caregiver, along with my > 18 year old grandson. A friend is bringing our supper today. God > sees to my needs. > > I try not to complain, but this morning looking at the day ahead I am > discouraged. I only ask for an ounce of improvement, a sign that > this treatment is having some effect, that all this work is not in vain. > > Thanks for listening, thanks for caring and forgive me for whining. > > 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 > > > > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. > Try it now. > Looking for last minute shopping deals? Find them fast with Yahoo! Search. 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.