Guest guest Posted August 3, 2006 Report Share Posted August 3, 2006 Hi , Thank you for the info. I need all the help I can get. - > Hi Peggy, > Thank you for your kind thoughts and great advice. > > On the test order from the doctor it says " Computerized Tomography (CT) IV Contrast. Nothing about HRCT. > > I went to the PF site and could only find a general description of the biopsy. The doctor did mention one pending the outcome of the CT scan and a pulmonary function test. > > Can you provide the web address where I may do research on what I should consider regarding a lung biopsy? I have no idea of what to be looking for. > > I am so lucky to have one of the best professions I can think of. Caring for the pets of others when they are on vacation, or simply too busy to care for the pets themselves keeps me busy and my mind occupied. I used to envy people walking and caring for a beautiful German shepherd, Labrador retriever, or other great animals. Now I have the privilege of doing so almost every day! > > All the very best, > > > > Hi , > I know your family is really questioning God as to how and why this monster > picked you, It is just a hard thing for any of our family members. The > anger, questioning, grieving, sadness. It is so hard on everyone concerned. > They should go to our home page and talk to other caregivers. It helps so > much to know you are talking with others that are going through the same > thing. This group is the best thing I've ever had to help with LIFE after > devastating news. To be able to share your life and sadness and to share > theirs is amazing balm for your heart. > > After you get your CT (hopefully an HRCT) the best imaging. You will wait > for those results. Them your Dr. will probably talk to you about a biopsy. > research this carefully. The PF foundation has information, Leanne is a > great place to get help from. The number is on the home site. > > As far as your daughter-in-love, that is so sweet. I am sure your whole > family will be praying. Some of us here on this site will be praying also. > When you are having trouble fighting the monster out of your thoughts a > prayer will work. The devil has to flee when we call on Jesus. > Do everything you can to LIVE everyday..Don't let this paralyze you. > Keep as busy as possible. > > Stay on the board and share it all. God Bless You... > Peggy 09/04 ipf > > > > The purpose of Paws and Play is to improve the quality of the lives around us. > > > > > --------------------------------- > See the all-new, redesigned Yahoo.com. Check it out. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Leanne, thanks for your story. I think I will join in step with you. "That's your story and I'm stickin' with it too"! All I read tells me some of the stuff I need to be cautious of. The bottom line is, as Peggy always says, the treatment is the same no matter the tests. Perhaps my Dr. is wiser than I give him credit for....he does not want to start Prednisone because the side effects are not good....he doesn't take a bunch of tests...maybe because in the long run it doesn't really make a difference. I think this is where the futility of ipf/pf comes in...nothing can be done and THAT is what is hard to accept. I'm not always good about turning over to God what I cannot change. God just about has to tie and straddle me to shove serenity down my throat. Love to you all. Sher ipf 5-05 Don't worry about tomorrow, God is already there. to be continued........> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ---------------------------------> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Sher, I agree that it's the frustration of knowing that if the diagnosis is IPF there is really not much that can be done that hurts the most. If, like Leanne I had pain from the lung biopsy for 12 MONTHS (!!!!) post-op, I would not be a happy camper. If I have such a limited amount of time left, I don't want to spend it in pain from something I didn't have to do. OY that would tick me off. I had absolutely no discomfort after about a month. It's been three months now and the site is healed and doesn't bother me in the least. And yet some of us ( I think Vicky too) have horrendous pain for months and months. The specialist I saw at Columbia Presbyterian in NY told my sister and I that with PF in most of it's associated forms "we are really flying by the seat of our pants because we don't know what, if anything works". I could hear the frustration in his voice at having to tell me this. Most of these docs are decent human beings doing the best they can. Unfortunately there just isn't alot known about these illnesses and how to treat them. I saw my counselor today (what a huge help she is.... I found her through my church... God is good) She reminded me that I'm not unique, that we all have limited life expectency. NO ONE lives forever and I've been given the gift of a wake up call, a reminder that life is short and precious and that I can't afford to take it for granted. So I just keep praying my way through each day and I thank God for each and every one of you. You are all a gift in my life that I wouldn't have if not for the IPF. Beth IPF 06/06Draw close. Hold hands. Life is short. God is good. to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Hi ya'll......... Yep yep, I'm stickin to the story, never again will I have a lung biopsy, I've had 2 c sections, surgery for a blocked carotid artery in my neck, surgery for cancer, but this was the worst. I had mine done April 26th and I still takepainpills everyday for mine. 90% of the time the pain I have is in the lung they biopsied, the other 10% both lungs. They told me I need a heart and lung transplant but I said noooooooooooooooo, I'll just hang around here until Jesus calls me home and do all I can to stay healthly and yes God is GOOD!!!!! All the time.. Vicky81856 IPH/PF 4/06 ••••••••••••• Original Message ••••••••••••• Sher, I agree that it's the frustration of knowing that if the diagnosis is IPF there is really not much that can be done that hurts the most. If, like Leanne I had pain from the lung biopsy for 12 MONTHS (!!!!) post-op, I would not be a happy camper. If I have such a limited amount of time left, I don't want to spend it in pain from something I didn't have to do. OY that would tick me off. I had absolutely no discomfort after about a month. It's been three months now and the site is healed and doesn't bother me in the least. And yet some of us ( I think Vicky too) have horrendous pain for months and months. The specialist I saw at Columbia Presbyterian in NY told my sister and I that with PF in most of it's associated forms "we are really flying by the seat of our pants because we don't know what, if anything works". I could hear the frustration in his voice at having to tell me this. Most of these docs are decent human beings doing the best they can. Unfortunately there just isn't alot known about these illnesses and how to treat them. I saw my counselor today (what a huge help she is.... I found her through my church... God is good) She reminded me that I'm not unique, that we all have limited life expectency. NO ONE lives forever and I've been given the gift of a wake up call, a reminder that life is short and precious and that I can't afford to take it for granted. So I just keep praying my way through each day and I thank God for each and every one of you. You are all a gift in my life that I wouldn't have if not for the IPF. Beth IPF 06/06Draw close. Hold hands. Life is short. God is good. to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Beth,Thanks for sharing what your counseler said...I needed to hear that perspective. We all do have our time and this disease is a wake up call that life is so very precious! My dad was down for about 2 months after thelung biopsy and he still has pain at times. THey did not discover anything different from the biopsy. He said he will not go through it again.The doctors are saying they are going to start tapering him of prednisone and start Immuran. ANyonoe else on that? How is it? He is retaining a lot of fluid so they just gave him a dieretic. He is so blotted from the prednisone. Anne, you are not alone....this is so scary....just continue being there for your dad...I have days I cry all day....and days I think it will be okay...we're here for you!Thanks group...I don't post much...but I think you are all WONDERFUL!!!!CYndi (DAD PF 12/05)Everyone that lives in California....UCLA is having a PF "class" on December 1st, sponsored by the coalition. There is also one in NOrthern california in November. I'm taking my dad...would love to meet some of you there! Beth wrote: Sher, I agree that it's the frustration of knowing that if the diagnosis is IPF there is really not much that can be done that hurts the most. If, like Leanne I had pain from the lung biopsy for 12 MONTHS (!!!!) post-op, I would not be a happy camper. If I have such a limited amount of time left, I don't want to spend it in pain from something I didn't have to do. OY that would tick me off. I had absolutely no discomfort after about a month. It's been three months now and the site is healed and doesn't bother me in the least. And yet some of us ( I think Vicky too) have horrendous pain for months and months. The specialist I saw at Columbia Presbyterian in NY told my sister and I that with PF in most of it's associated forms "we are really flying by the seat of our pants because we don't know what, if anything works". I could hear the frustration in his voice at having to tell me this. Most of these docs are decent human beings doing the best they can. Unfortunately there just isn't alot known about these illnesses and how to treat them. I saw my counselor today (what a huge help she is.... I found her through my church... God is good) She reminded me that I'm not unique, that we all have limited life expectency. NO ONE lives forever and I've been given the gift of a wake up call, a reminder that life is short and precious and that I can't afford to take it for granted. So I just keep praying my way through each day and I thank God for each and every one of you. You are all a gift in my life that I wouldn't have if not for the IPF. Beth IPF 06/06Draw close. Hold hands. Life is short. God is good. to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Hi Cyndi, My Dad is on both prednisone and imuran (aka azathioprine). Everything is scary, yes. I didn't hear back from the specialist today and so plan to get Dad in to see his primary Care doctor tomorrow to get his blood sugar checked out. I think it's high. So worried about him right now. Anyway good luck with your dad, hope all continues to go well, anne (dad ipf 03/06) to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Cyndi, I completely forgot to say that I don't think that Dad has had any side effects from the Imuran as of yet--everything so far is prednisone related as far as we can tell. He started on Imuran 25mg/day for 2 weeks then went to 50mg/day for 2 weeks and has just this week started 75mg per day. anne to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Anne,Let us know what you find out tomorrow. Try and get some rest. I'll be thinking about you. Cyndi (DAD PF 12/05)anne wolf wrote: Hi Cyndi, My Dad is on both prednisone and imuran (aka azathioprine). Everything is scary, yes. I didn't hear back from the specialist today and so plan to get Dad in to see his primary Care doctor tomorrow to get his blood sugar checked out. I think it's high. So worried about him right now. Anyway good luck with your dad, hope all continues to go well, anne (dad ipf 03/06) to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2006 Report Share Posted September 14, 2006 Thanks Anne...we're hoping for the best!anne wolf wrote: Cyndi, I completely forgot to say that I don't think that Dad has had any side effects from the Imuran as of yet--everything so far is prednisone related as far as we can tell. He started on Imuran 25mg/day for 2 weeks then went to 50mg/day for 2 weeks and has just this week started 75mg per day. anne to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Beth, isn't it strange...some suffer and some don't with lung-bio. I too am grateful for this board. sher ipf 5-06 to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2006 Report Share Posted September 15, 2006 Sher, It is strange, isn't it? That's why it's so important for us all to look out for ourselves and figure out what works for us and what God wants us to do. Nothing works for everyone and what is a disaster for one person, is a Godsend to another. Beth IPF 06/06Draw close. Hold hands. Life is short. God is good. to be continued... .....> > > i saw a new pulmonologist today. after reviewing all of my xray, cat > scan, biopsy, and pft reports....he is not convinced that i have PF. > he says even in the pathology report it states "may suggest" also, > the eosinophilic granuloma that i was lead to believe caused the PF, > shows to have granules present but not yet turned into full blown > granuloma. this can be controlled and kept from progressing with > the "proper" medications.> > i had a new series of blood work, xrays and pft's done today. > tomorrow i will be having a new cat scan. also i went to the > hospital that originally did my biopsy and picked up my slides and > returned them to the new pulm to personally review.> > he could not get over the amount of prednisone and actimmune that i > have been on for almost the passed year when a definite diagnosis > could not be "confirmed".> > to me, this is possibly good news...but also kind of scary because > if it is not PF then they still have yet to determine what is > wrong.....kind of makes you wonder if any of these dr's know their > asses from their elbows.> > however we will not know anything more than we know right now until > late next week, early the following week. more hurry up and wait.> > now i am off to take my daughter to softball practice and then to > dance lessons....a mother's work is never done. > > love to you all and god bless!> > jaime > > > > > > > > > ------------ --------- --------- ---> Get your own web address for just $1.99/1st yr. We'll help. Yahoo! Small Business.> All-new Yahoo! Mail - Fire up a more powerful email and get things done faster. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2006 Report Share Posted September 16, 2006 Wow I was reading some post and some of you were only in the hospital for a short time with a lung biopsy. I had my open lung biopsy in Jan 10,1990 and boy do I remember the pain and I was in the hospital for 9 days. They cut me like they would for a transplant. I was told the incision would be 2 " will it was 12" the surgeon decided to take a piece from all three lobes to see if the same in the whole lung and yes it was. I remember them removing the drainage tube from my lung, felt like someone pour a boiling liquid in my lungs. And my night nurse() woke me up to tell me she was mad at me and that I was gonna die if I didn't get up and move. So the next morning I was having my breakfast and they gave me a pain killer and I went to sleep and woke up to a cold breakfast and then I realized I was sleeping and not moving, so when my dosage time came I refused the pain med and my Dr was up to see me immediately and I told him no I would not take it and he said at least take it at night. AndI agreed. Then me and hubby went for a walk down the hall and boy did I hurt. But we kept doing that anyway and then the day came an I was released and had 2-3 hr ride home. I live in De and had the surgery at Deborah Heart and Lung Center in Browns Mills , NJ. I was out of work for 8 mons. I was told I would be out of work for a month and it turned out to be 8 mons and I was put on predisone for 9 mons and that helped to get me up and moving but I was a BEAR and a MEAN one at that. Mom said hubby deserved a purple heart for putting up with me. My daughter was 9 at the time and she would miss school and was very quiet and I would wake up and there would be ice water sitting there for me and I thought my hubby had slipped home and hooked me up , didn't know till the school called that it was her. Poor baby thought I was going to die. But after those 8 mons I was back to work and shortly after that off the predisone, oh yeah and gained about a 100 lbs on that med and I was dieting while on it. I wasn't a happy camper they still try to get me to take it and I refuse. I have been on imuran for nearly 3 yrs now, he told me 18 mons and that is per dose. So I started with 50 mg then up to 200 mg then back down now on 125mg. The med can upset your stomach so I take mine right before I go to bed and I don't notice the upset stomach guess I'm sleeping by then. I didn't notice the upset tummy till I got to 150 mg then I would take one pill in am and 2 at night. I told my Dr and he said didn't matter when they were taken as long as you take them. They have slowed down the fibrosis, I was in remission for quite awhile then the disease started to grow spread or what ever it does. They wanted to do another lung biopsy I said no. Wowser I didn't mean to mean to write a book. Quote Link to comment Share on other sites More sharing options...
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