Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 I think they are doing what they think they can. He is already on NAC - a suggestion from the board . It was another bad night last night. He is so tired. He is suppose to go to rehab this afternoon, and I know that when I go in to get him up he is going to fight me. Sigh! His second anti-depressant was beginning to help. He was afraid that the antidepressant started the cough again, so he didn't take it yesterday. Last night he was back in the depths. Since the coughing didn't subside just one little bit he took the antidepressant again today. Hopefully he will be perked back up by tomorrow. He is taking cough medicine with codene at night. He takes Halls (which used to work) cough drops. It is just about all they think they can do. We go back to Chicago on the 18th. Surely things will get better, they always do. K IllinoisSher Bauman wrote: K... Fortunately for me, I have yet to have the bad coughing. It was bad when I was first dx then I went on NAC and it just disappeared after awhile. I'm sorry Don can't stop the coughing. What does his Dr. say to do? MamaSher, age 69.IPF 3-06,NSIP 4-08. OR.Don't fret about tomorrow, God is already there! Re: sher Hi Sher, How are you doing? You have sure been up to some hijinks there girl. Don had a terrible night last night. He coughed all night. I can usually handle that but he tries so hard not to cough, he groans and tries to keep from it. Hope you have a great night. K Illinois K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 Hi K, I Hope Don feels better, decides to go to Rehab this afternoon, and he's not going to put a fight! and the coughing stops. Irene ---- Original Message ---- To: Breathe-Support Sent: Mon, 2 Jun 2008 1:00 pm Subject: Re: sher I think they are doing what they think they can. He is already on NAC - a suggestion from the board . It was another bad night last night. He is so tired. He is suppose to go to rehab this afternoon, and I know that when I go in to get him up he is going to fight me. Sigh! His second anti-depressant was beginning to help. He was afraid that the antidepressant started the cough again, so he didn't take it yesterday. Last night he was back in the depths. Since the coughing didn't subside just one little bit he took the antidepressant again today. Hopefully he will be perked back up by tomorrow. He is taking cough medicine with codene at night. He takes Halls (which used to work) cough drops. It is just about all they think they can do. We go back to Chicago on the 18th. Surely things will get better, they always do. K Illinois Sher Bauman <bofuswbcable (DOT) net> wrote: K... Fortunately for me, I have yet to have the bad coughing. It was bad when I was first dx then I went on NAC and it just disappeared after awhile. I'm sorry Don can't stop the coughing. What does his Dr. say to do? MamaSher, age 69.IPF 3-06,NSIP 4-08. OR. Don't fret about tomorrow, God is already there! Re: sher Hi Sher, How are you doing? You have sure been up to some hijinks there girl. Don had a terrible night last night. He coughed all night. I can usually handle that but he tries so hard not to cough, he groans and tries to keep from it. Hope you have a great night. K Illinois K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 K... others on the board will be more help than I. Many here have or have had the chronic/serious coughing. Maybe they can help. I hope so. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Re: sher Hi Sher, How are you doing? You have sure been up to some hijinks there girl. Don had a terrible night last night. He coughed all night. I can usually handle that but he tries so hard not to cough, he groans and tries to keep from it. Hope you have a great night. K Illinois K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2008 Report Share Posted June 2, 2008 you're Welcome ! Irene ---- Original Message ---- To: Breathe-Support Sent: Mon, 2 Jun 2008 4:53 pm Subject: Re: sher Thanks Irene! What a great answer from a great lady. K Irene <Irn3183aim> wrote: Hi K, I Hope Don feels better, decides to go to Rehab this afternoon, and he's not going to put a fight! and the coughing stops. Irene ---- Original Message ---- From: Kennelly <l_kennelly> To: Breathe-Support Sent: Mon, 2 Jun 2008 1:00 pm Subject: Re: sher I think they are doing what they think they can. He is already on NAC - a suggestion from the board . It was another bad night last night. He is so tired. He is suppose to go to rehab this afternoon, and I know that when I go in to get him up he is going to fight me. Sigh! His second anti-depressant was beginning to help. He was afraid that the antidepressant started the cough again, so he didn't take it yesterday. Last night he was back in the depths. Since the coughing didn't subside just one little bit he took the antidepressant again today. Hopefully he will be perked back up by tomorrow. He is taking cough medicine with codene at night. He takes Halls (which used to work) cough drops. It is just about all they think they can do. We go back to Chicago on the 18th. Surely things will get better, they always do. K Illinois Sher Bauman <bofuswbcable (DOT) net> wrote: K... Fortunately for me, I have yet to have the bad coughing. It was bad when I was first dx then I went on NAC and it just disappeared after awhile. I'm sorry Don can't stop the coughing. What does his Dr. say to do? MamaSher, age 69.IPF 3-06,NSIP 4-08. OR. Don't fret about tomorrow, God is already there! Re: sher Hi Sher, How are you doing? You have sure been up to some hijinks there girl. Don had a terrible night last night. He coughed all night. I can usually handle that but he tries so hard not to cough, he groans and tries to keep from it. Hope you have a great night. K Illinois K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2008 Report Share Posted June 6, 2008 Sher Her decision is to leave two forums-one for patients and one for caregivers and for us to all move on and get off a subject that became very ugly for no reason. > > Leanne... will you please clear up one thing? > You say the consensus is to allow CG...yet you say you do not want to merge the boards. Will you clarify what the decision is please? One board or two and if it's two, will you clarify that as well? > Thanks! > > MamaSher, age 69. IPF 3-06, OR. > Don't fret about tomorrow, God is already there! > Patients vs Caregivers > > > There is currently a debate going on whether to allow caregivers on the patient site or vice-versa. As the owner of the site and the representative of the Pulmonary Fibrosis Foundation which sponsors this site, I would like to explain the reasoning behind our decision to keep the members separated according to their situation. > > Each group has their own set of feelings, fears frustrations, etc. that they must face and work through. A caregiver, no matter how much they read, can never know what it is like to be a patient and vice-versa. > > Each patient is different, some dwell on their disease others live their lives as if there was nothing wrong with them and every shade of gray in between. The only way to understand an individual, whether a patient or a caregiver, is to communicate. A patient may not want to discuss his/her thoughts and feelings. He/she may be hiding his/her fears and frustrations for the sake of the family, or some other reason, or maybe he/she just doesn't have any fears or frustrations. This goes for the Caregiver as well. > > Bottom line. The board is an On line Support group. Underline Support. We are here to support each other the best way that we can. It's supposed to be a safe place to vent and share stories, concerns, whatever is on your mind. It is not the end all and be all for everyone. If you don't like someone or the way they respond or ??, you can delete and not read them. If you have an issue with someone personally, you can email them personally. Issues can be addressed discreetly off the board. > > In the patient poll, people have responded favorably that they would like to include Caregivers. If this is truly how everyone feels, this would mean that we would open the group to everyone. The two groups would be merged. Right now patients are referred to the patient group and caregivers are referred to the caregiver group. We would not just have the few caregivers that are currently on our board. Honestly, I don't want that. I would like to keep the groups as separate as possible. I understand that there may be a caregiver or two who may want to get a different patient perspective or just have a question, but that is extremely hard to moderate. Honestly, I don't think the caregivers would want the patients on their board, but I for one, am not polling them. > > I'm as Christian as the next person and I truly want to do what's right for US. This is OUR board. Hence the poll. I'm sorry that it stirred up so many pots. We have so much other " stuff " to deal with and I didn't realize that I stirred up a hornet's nest. I've learned throughout my life that people take things personally. A friend of mine once said, it's because were a person. We're human. We're dealing with a terminal illness on both sides doing the best we can each and every day. Some days are better than others. > > But, we will put this behind us and we will be a stronger board because of it. I've been so blessed to have this Board in my life. It has helped me through so many rough times. I've personally met friends I will have for life. I am so blessed. Can we please put this situation behind us and move forward from here? > > Leanne > Owner - Breathe Support Groups > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 May Not familiar with your customs as still not even adjusted to the pictures of kilts, but isn't that a bit late to be having tea? lol > > > thank you sher. > > received your envelope today. its a lovely little package. > i will have tea tomorrow at us eastern 3.30pm which is 20.30 > here. intersting flavour. > > thanks > may > glasgow, scotland > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Hi Peggy... visit w/ Lysa and girls is always good...thanks for asking, but I'm glad to be home too. I miss my project that kept me busy. I'll have to start another. Anxious to meet in Olympia. Love, MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Sher Hi Sher, How was your week-end with your daughter ? My girlfriend of 40 years was here Fri, Sat and left Sun. now I am making my bibles to keep me busy. Hope it was all good. Lucky you getting to meet some Air Family members soon. I'm jealous. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 Welcome home, MamaSher. I missed your posts, even the bitchy ones. I like that in a woman. To a point, and as long as I can be bitchy, too. Men have their mments, too, as you must have observed. Jack Sher Hi Sher, How was your week-end with your daughter ? My girlfriend of 40 years was here Fri, Sat and left Sun. now I am making my bibles to keep me busy. Hope it was all good. Lucky you getting to meet some Air Family members soon. I'm jealous. Peggy, ipf 6/04 Florida Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 bruce i drink tea all day long. peppermint tea, green tea, earl haig. i dont like coffee (wish i did). i drink a lot of plain water hot or cold. i did have a coke on sunday in a thai restaurant. had to have something but you know what i think about carbonated drinks with no nutrients. baa humbug. may > > > > > > thank you sher. > > > > received your envelope today. its a lovely little package. > > i will have tea tomorrow at us eastern 3.30pm which is 20.30 > > here. intersting flavour. > > > > thanks > > may > > glasgow, scotland > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 Sher, Good luck with the endoscopy. Please let us know how it goes later on! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Sher Are you packed for your fun meeting? Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 Sher, I am glad you had good results. When I was younger I had that done about four times within a year. I had stomach pain and was on Zantac by prescription over a year, didn't help. The last one they found I had a bacterial infection. That was painful. The cure was about 10 (seriously) antibiotics. After 9 days my tong turned black and I thought I would croke. (is that a word??) So I ate yogurt until I was green. Oh well. I am just so glad your OK.. You do have a big time coming up. I sure do hope a lot can come.My eyes are doing fine. I'll be glad to get new glasses.. I have about five pair and now use different ones foe whatever I'm doing.. lol I am just not right. Love and Prayers, PeggyIPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2008 Report Share Posted June 11, 2008 Peggy... the Dr. did take a bio for a bacterial check. I'll know next Monday. MamaSher, age 69. IPF 3-06, OR.Don't fret about tomorrow, God is already there! Re: Sher Sher, I am glad you had good results. When I was younger I had that done about four times within a year. I had stomach pain and was on Zantac by prescription over a year, didn't help. The last one they found I had a bacterial infection. That was painful. The cure was about 10 (seriously) antibiotics. After 9 days my tong turned black and I thought I would croke. (is that a word??) So I ate yogurt until I was green. Oh well. I am just so glad your OK.. You do have a big time coming up. I sure do hope a lot can come. My eyes are doing fine. I'll be glad to get new glasses.. I have about five pair and now use different ones foe whatever I'm doing.. lol I am just not right. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 God Mornin. My send and close widow buttons are right next to each other so I hit the send instead of close. I am so blond.....LOL I had such a good time in Tampa. My friends and family were so surprised and guess what the first thing they said was "Why you don't look sick" lol I gave them the standard "I'm not sick just can't breathe cause of crappy lungs"Hope your doing well today. I am so happy and proud of myself. I went upstairs at s to sleep. She turned my concentrator up to 8 and I just went one step at a time.. I felt like such a smartie. Love and Prayers, Peggy IPF 2004, Florida"Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2008 Report Share Posted June 30, 2008 Peggy... I forgot, you have Mac and it would be a bit different. Oh well, maybe this info will help someone! I'm SO glad you had a good time in Tampa. I missed your posts and I'm glad to see you back. I know you will be glad to see our board has righted itself and Bruce is posting again and the board in general has come alive since Mayleen was removed. You went UPSTAIRS! Oh you are a smartie. Give yourself a huge hug from me! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Re: Sher God Mornin. My send and close widow buttons are right next to each other so I hit the send instead of close. I am so blond.....LOL I had such a good time in Tampa. My friends and family were so surprised and guess what the first thing they said was "Why you don't look sick" lol I gave them the standard "I'm not sick just can't breathe cause of crappy lungs" Hope your doing well today. I am so happy and proud of myself. I went upstairs at s to sleep. She turned my concentrator up to 8 and I just went one step at a time.. I felt like such a smartie. Love and Prayers, Peggy IPF 2004, Florida "Worry looks around, Sorry looks back, Faith looks up." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Sher Yes, I'm feeling fine. Gradual decline still continues but nothing major at this point. As to doctors, they are still trying to figure things out as to an autoimmune disease. While there is no question my form of PF is UIP, the autoimmune issue is quite another story. I shall quote exactly from the University of Chicago report. While there is no overt connective tissue disorder, the history of GERD with a patulous esophagus on chest CT scan, elevated ESR, CRP, CK, aldolase and ANA along with an atypical chest CT scan suggest that an autoimmune process such as undifferentiated connective tissue disease or an amyopathic polymyositis may underlie the UIP. It may be that the connective tissue disease will manifest itself in the future. Now the recommendation based on that was Imuran and Prednisone and see another rheumatologist. So, now I've been to a new rheumatologist. He did a lot of blood work, some repeats of U of Chicago to see trends and some new, xrayed my hands, and has me getting an Electromyography to determine if that shows evidence of a muscle disease. A thin needle electrode is inserted through your skin into the muscle to be tested. Electrical activity is measured as you relax or tighten the muscle. I see him again in early August. Now here we are nearly a year from my initial diagnosis and still trying to figure things out. You'd think I'd be pushing but not really. The likely outcome is some form of autoimmune disease which they may make an educated guess as to what form. Then it may or may not be a cause of the PF and treating it may or may not accomplish anything. As the treatment is Imuran and Prednisone and as it is just to improve your function but not generally a cure, I'm still leaning very heavily toward continuing to do exactly what I'm doing now-nothing. I do look and read those who have tolerated those medications well and their progression of the disease has been slowed. Generally, however, they didn't have UIP. Now, the Autoimmune with UIP is another issue largely unknown as to what, if anything, meds might do. My neurologist suspected an autoimmune disease 4-5 years ago but the rheumatologists never found evidence. However, its not one factor but the combination of many that lead to the conclusion now. I am waiting however for a more compelling argument showing its likely to make a difference in my situation as prednisone is extremely frightening to me with my history of mental illness. Also, my reaction to medications tried to impact mood would not bode well for it. I was labelled medication resistant although intolerant would be a better word as I had rather extreme reactions to medication after medication. I realize the autoimmune, if present, could impact other organs but it hasn't yet and might not. I would never trade where I am today for where I was 3 years ago. So, my resistance to prednisone shouldn't influence anyone else. My situation is quite unique. Living or dying with PF is so much less frightening to me than the thought of returning to the depths of depression and anxiety. And, since I don't respond favorably to any psychiatric meds there would be no way to use medication to offset any effect. So, I just sort of ignore all the issues around the autoimmune for the moment and continue to do as I have been. I'm going to get as much life both in quantity and quality as these lungs have in them. > > >> > > Well, I had the bloodwork and the GSE done and the last came back> > > unsatisfactory.........the results are going in to Shands Evaluation> > > Team this morning and my doctor told me to expect further testing.> > >> > >> > > Did anyone here ever have an Upper Gi? can you tell me what it is> > like,> > > please. The Gastric Stomach Emptying Study was strange. Actually> > > eating the scrambled eggs was the worst...they were terrible!!! and> it> > > turns out that I only have 29% of the 60% expected for someone my> > age..> > > in emptying speed over 60 minutes (that is how long it is supposed> to> > > take)...Iam supposed tp empty my stomach much faster than I am,> > > evidently. I was put on reglan years ago for problems and have> > > absolutely no symptoms or problems since, but I am wondering about> my> > > next step - a friend told me that the Upper Gi would probably be it.> > >> > > Thanks,> > > Kathy fl> > > pf.4/07> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 1, 2008 Report Share Posted July 1, 2008 Bruce... thanks for your update! Life goes on doesn't it, with us or without us. I rather do about what you do. I keep doing one day at a time. Somedays chicken and somedays feathers. Really, it's all any of us can do. Just keep on keepin' on, making choices as the questions arise and pick each day what gives us the best quality of life. I like what you wrote: 'gradual decline'. Yeah, me too. I saw more decline with my last PFTs last week. Take care friend and enjoy. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Re: Sher Sher Yes, I'm feeling fine. Gradual decline still continues but nothing major at this point. As to doctors, they are still trying to figure things out as to an autoimmune disease. While there is no question my form of PF is UIP, the autoimmune issue is quite another story. I shall quote exactly from the University of Chicago report. While there is no overt connective tissue disorder, the history of GERD with a patulous esophagus on chest CT scan, elevated ESR, CRP, CK, aldolase and ANA along with an atypical chest CT scan suggest that an autoimmune process such as undifferentiated connective tissue disease or an amyopathic polymyositis may underlie the UIP. It may be that the connective tissue disease will manifest itself in the future. Now the recommendation based on that was Imuran and Prednisone and see another rheumatologist. So, now I've been to a new rheumatologist. He did a lot of blood work, some repeats of U of Chicago to see trends and some new, xrayed my hands, and has me getting an Electromyography to determine if that shows evidence of a muscle disease. A thin needle electrode is inserted through your skin into the muscle to be tested. Electrical activity is measured as you relax or tighten the muscle. I see him again in early August. Now here we are nearly a year from my initial diagnosis and still trying to figure things out. You'd think I'd be pushing but not really. The likely outcome is some form of autoimmune disease which they may make an educated guess as to what form. Then it may or may not be a cause of the PF and treating it may or may not accomplish anything. As the treatment is Imuran and Prednisone and as it is just to improve your function but not generally a cure, I'm still leaning very heavily toward continuing to do exactly what I'm doing now-nothing. I do look and read those who have tolerated those medications well and their progression of the disease has been slowed. Generally, however, they didn't have UIP. Now, the Autoimmune with UIP is another issue largely unknown as to what, if anything, meds might do. My neurologist suspected an autoimmune disease 4-5 years ago but the rheumatologists never found evidence. However, its not one factor but the combination of many that lead to the conclusion now. I am waiting however for a more compelling argument showing its likely to make a difference in my situation as prednisone is extremely frightening to me with my history of mental illness. Also, my reaction to medications tried to impact mood would not bode well for it. I was labelled medication resistant although intolerant would be a better word as I had rather extreme reactions to medication after medication. I realize the autoimmune, if present, could impact other organs but it hasn't yet and might not. I would never trade where I am today for where I was 3 years ago. So, my resistance to prednisone shouldn't influence anyone else. My situation is quite unique. Living or dying with PF is so much less frightening to me than the thought of returning to the depths of depression and anxiety. And, since I don't respond favorably to any psychiatric meds there would be no way to use medication to offset any effect. So, I just sort of ignore all the issues around the autoimmune for the moment and continue to do as I have been. I'm going to get as much life both in quantity and quality as these lungs have in them. > > >> > > Well, I had the bloodwork and the GSE done and the last came back> > > unsatisfactory.........the results are going in to Shands Evaluation> > > Team this morning and my doctor told me to expect further testing.> > >> > >> > > Did anyone here ever have an Upper Gi? can you tell me what it is> > like,> > > please. The Gastric Stomach Emptying Study was strange. Actually> > > eating the scrambled eggs was the worst...they were terrible!!! and> it> > > turns out that I only have 29% of the 60% expected for someone my> > age..> > > in emptying speed over 60 minutes (that is how long it is supposed> to> > > take)...Iam supposed tp empty my stomach much faster than I am,> > > evidently. I was put on reglan years ago for problems and have> > > absolutely no symptoms or problems since, but I am wondering about> my> > > next step - a friend told me that the Upper Gi would probably be it.> > >> > > Thanks,> > > Kathy fl> > > pf.4/07> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Thanks for that post, Bruce. I think some of it may apply to me. My original diagnosis, in 2005, based on x-rays and CT scans, was IPF. A biopsy two months ago came back UIP. In one handbook UIP was termed as another name for IPF. Your comments lead me to believe that there is a difference between the two, enough that treatment may be effective for UIP and that one should be examined for other problems. I see my pulmo Friday and hope to mine some info from him, but it's might hard digging, If you have any info on the difference between UIP and IPF, if there is any, I would appreciate hearing it. Jack Re: Sher Sher Yes, I'm feeling fine. Gradual decline still continues but nothing major at this point. As to doctors, they are still trying to figure things out as to an autoimmune disease. While there is no question my form of PF is UIP, the autoimmune issue is quite another story. I shall quote exactly from the University of Chicago report. While there is no overt connective tissue disorder, the history of GERD with a patulous esophagus on chest CT scan, elevated ESR, CRP, CK, aldolase and ANA along with an atypical chest CT scan suggest that an autoimmune process such as undifferentiated connective tissue disease or an amyopathic polymyositis may underlie the UIP. It may be that the connective tissue disease will manifest itself in the future. Now the recommendation based on that was Imuran and Prednisone and see another rheumatologist. So, now I've been to a new rheumatologist. He did a lot of blood work, some repeats of U of Chicago to see trends and some new, xrayed my hands, and has me getting an Electromyography to determine if that shows evidence of a muscle disease. A thin needle electrode is inserted through your skin into the muscle to be tested. Electrical activity is measured as you relax or tighten the muscle. I see him again in early August. Now here we are nearly a year from my initial diagnosis and still trying to figure things out. You'd think I'd be pushing but not really. The likely outcome is some form of autoimmune disease which they may make an educated guess as to what form. Then it may or may not be a cause of the PF and treating it may or may not accomplish anything. As the treatment is Imuran and Prednisone and as it is just to improve your function but not generally a cure, I'm still leaning very heavily toward continuing to do exactly what I'm doing now-nothing. I do look and read those who have tolerated those medications well and their progression of the disease has been slowed. Generally, however, they didn't have UIP. Now, the Autoimmune with UIP is another issue largely unknown as to what, if anything, meds might do. My neurologist suspected an autoimmune disease 4-5 years ago but the rheumatologists never found evidence. However, its not one factor but the combination of many that lead to the conclusion now. I am waiting however for a more compelling argument showing its likely to make a difference in my situation as prednisone is extremely frightening to me with my history of mental illness. Also, my reaction to medications tried to impact mood would not bode well for it. I was labelled medication resistant although intolerant would be a better word as I had rather extreme reactions to medication after medication. I realize the autoimmune, if present, could impact other organs but it hasn't yet and might not. I would never trade where I am today for where I was 3 years ago. So, my resistance to prednisone shouldn't influence anyone else. My situation is quite unique. Living or dying with PF is so much less frightening to me than the thought of returning to the depths of depression and anxiety. And, since I don't respond favorably to any psychiatric meds there would be no way to use medication to offset any effect. So, I just sort of ignore all the issues around the autoimmune for the moment and continue to do as I have been. I'm going to get as much life both in quantity and quality as these lungs have in them. > > >> > > Well, I had the bloodwork and the GSE done and the last came back> > > unsatisfactory. ........the results are going in to Shands Evaluation> > > Team this morning and my doctor told me to expect further testing.> > >> > >> > > Did anyone here ever have an Upper Gi? can you tell me what it is> > like,> > > please. The Gastric Stomach Emptying Study was strange. Actually> > > eating the scrambled eggs was the worst...they were terrible!!! and> it> > > turns out that I only have 29% of the 60% expected for someone my> > age..> > > in emptying speed over 60 minutes (that is how long it is supposed> to> > > take)...Iam supposed tp empty my stomach much faster than I am,> > > evidently. I was put on reglan years ago for problems and have> > > absolutely no symptoms or problems since, but I am wondering about> my> > > next step - a friend told me that the Upper Gi would probably be it.> > >> > > Thanks,> > > Kathy fl> > > pf.4/07> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Since joining here I am left wondering whether PF in all its forms are due to an autoimmune problem. It's known that mine is due to connective tissue disease, but I've noticed that some with IPF also have other problems like raynauds. So I wonder if for some people the PF is the FIRST manifestation of a problem, unlike for me a secondary one. Does that make sense? Love Ze xx> > > >> > > > Well, I had the bloodwork and the GSE done and the last came back> > > > unsatisfactory. ........the results are going in to Shands Evaluation> > > > Team this morning and my doctor told me to expect further testing.> > > >> > > >> > > > Did anyone here ever have an Upper Gi? can you tell me what it is> > > like,> > > > please. The Gastric Stomach Emptying Study was strange. Actually> > > > eating the scrambled eggs was the worst...they were terrible!!! and> > it> > > > turns out that I only have 29% of the 60% expected for someone my> > > age..> > > > in emptying speed over 60 minutes (that is how long it is supposed> > to> > > > take)....Iam supposed tp empty my stomach much faster than I am,> > > > evidently. I was put on reglan years ago for problems and have> > > > absolutely no symptoms or problems since, but I am wondering about> > my> > > > next step - a friend told me that the Upper Gi would probably be it.> > > >> > > > Thanks,> > > > Kathy fl> > > > pf.4/07> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Zena, That makes complete sense to me and as a matter of fact my biopsy report (from my local community hospital in NY) stated that the 'fibrosis could be the presenting symptom in an as yet undiagnosed autoimmune disease). I personally think that they will eventually find that most PF has an autoimmune component. Look at how many of us suffer from things like fibromyalgia, rhuematoid arthritis, raynaud's etc etc etc. Makes you go hmmmmmm doesn't it? Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Sher Since joining here I am left wondering whether PF in all its forms are due to an autoimmune problem. It's known that mine is due to connective tissue disease, but I've noticed that some with IPF also have other problems like raynauds. So I wonder if for some people the PF is the FIRST manifestation of a problem, unlike for me a secondary one. Does that make sense? Love Ze xx> > > >> > > > Well, I had the bloodwork and the GSE done and the last came back> > > > unsatisfactory. ........the results are going in to Shands Evaluation> > > > Team this morning and my doctor told me to expect further testing.> > > >> > > >> > > > Did anyone here ever have an Upper Gi? can you tell me what it is> > > like,> > > > please. The Gastric Stomach Emptying Study was strange. Actually> > > > eating the scrambled eggs was the worst...they were terrible!!! and> > it> > > > turns out that I only have 29% of the 60% expected for someone my> > > age..> > > > in emptying speed over 60 minutes (that is how long it is supposed> > to> > > > take)....Iam supposed tp empty my stomach much faster than I am,> > > > evidently. I was put on reglan years ago for problems and have> > > > absolutely no symptoms or problems since, but I am wondering about> > my> > > > next step - a friend told me that the Upper Gi would probably be it.> > > >> > > > Thanks,> > > > Kathy fl> > > > pf.4/07> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Zena/ Beth It is my opinion as well that ultimately PF will be found to be a form of or caused by or in some way an autoimmune disorder. Not only do we see all those who have other autoimmune, it takes on the characteristics even when they don't. And doesn't it sound logical that the lungs are scarring in response to something. Now this doesn't say that all those things currently considered causes don't play a role. What it does say is that the reason some of us develop fibrosis from those while others don't is the response of our bodies to them, i.e., an autoimmune response that includes or causes scarring. Unfortunately, even buying this theory doesn't solve much for you as it still doesn't tell you much more about how to prevent or treat it. It might however point you more directly toward the answers. It also points out that autoimmune disesaes, just as pulmonary fibrosis, still need much research and development of treatments. > > > > > > > > > > Well, I had the bloodwork and the GSE done and the last came back > > > > > unsatisfactory. ........the results are going in to Shands Evaluation > > > > > Team this morning and my doctor told me to expect further testing. > > > > > > > > > > > > > > > Did anyone here ever have an Upper Gi? can you tell me what it is > > > > like, > > > > > please. The Gastric Stomach Emptying Study was strange. Actually > > > > > eating the scrambled eggs was the worst...they were terrible!!! and > > > it > > > > > turns out that I only have 29% of the 60% expected for someone my > > > > age.. > > > > > in emptying speed over 60 minutes (that is how long it is supposed > > > to > > > > > take)....Iam supposed tp empty my stomach much faster than I am, > > > > > evidently. I was put on reglan years ago for problems and have > > > > > absolutely no symptoms or problems since, but I am wondering about > > > my > > > > > next step - a friend told me that the Upper Gi would probably be it. > > > > > > > > > > Thanks, > > > > > Kathy fl > > > > > pf.4/07 > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Jack Definitions are so complicated and everyone defines differently. Now we're pretty clear on PF, which is simply the all inclusive group of diseases. UIP is also clear as a specific pathologically identified form. IPF is used too many ways. Some use it interchangeably with UIP and some use it interchangeably with PF. It would seem technically that it is any form of PF with unknown cause. But then do we really know the cause of any form of PF? Now UIP is generally IPF because generally its of unknown cause. When we determine a probable cause many then says its UIP but not IPF. However, I'm not sure we ever determine beyond doubt a cause. We hypothesize about a cause. If one has autoimmune and UIP then we theorize that the autoimmune led to the UIP, yet they could have both been caused by the same thing or who says it doesn't happen the other way around. All the treatment answers we have are anecdotal, based on experiences and stories, not based on scientific evidence or clinical trials. That does not mean they don't work. It simply means we are lacking in terms of knowledge of when they work versus when they don't and why they work. We know that many people do report benefit of Imuran and Prednisone when used for PF. This board reflects that with 33% of the members on Prednisone and believing it is helping and some additional number now off but feeling they were helped. We have beliefs as to what distinguishes those it helps versus those it doesn't. But those beliefs are not necessarily accurate. Often too they may be after the fact determinations when up front the diagnosis may not even be complete. Many members here keep adding diseases to their signature as time goes on. Are those new diseases they developed or were they there all the time but just not yet diagnosed. Autoimmune diseases can lurk at low levels for a long time. Five years ago my neurologist suspected me of an autoimmune. All those years everyone said " no. " Now in 2008, I'm again suspected of having one. So, have I had it for 5 years? Might my UIP not have developed had it been treated 5 years ago? Might I have just gotten it? Who knows? It just shows again how little we do know. > > > > > > > > Well, I had the bloodwork and the GSE done and the last came back > > > > unsatisfactory. ........the results are going in to Shands Evaluation > > > > Team this morning and my doctor told me to expect further testing. > > > > > > > > > > > > Did anyone here ever have an Upper Gi? can you tell me what it is > > > like, > > > > please. The Gastric Stomach Emptying Study was strange. Actually > > > > eating the scrambled eggs was the worst...they were terrible!!! and > > it > > > > turns out that I only have 29% of the 60% expected for someone my > > > age.. > > > > in emptying speed over 60 minutes (that is how long it is supposed > > to > > > > take)....Iam supposed tp empty my stomach much faster than I am, > > > > evidently. I was put on reglan years ago for problems and have > > > > absolutely no symptoms or problems since, but I am wondering about > > my > > > > next step - a friend told me that the Upper Gi would probably be it. > > > > > > > > Thanks, > > > > Kathy fl > > > > pf.4/07 > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Thanks, Bruce. I get it that confusion reigns Perhaps the estimated 200,000 afflicted and the 20,000 yearly deaths from PF just isn't high enough to trigger big dollars for research. I was ignorant of it until my dx, and so was all my family, friends, acquaintances, and would be's. Sometimes, I think my pulmo belongs to the ignorants. I can't detect any underlying causes. My general health so far remains excellent. The IPF itself has created no limitations except for heavy exertion and mountain climbing. Depending upon my mood at the time, I apply any one of a variety of my definitions for heavy exertion. Just picking up a broom, for example, exhausts me, as does riding a mower. A golf club is as light as a feather. And picking up the tab at dinner would nearly put me in a coma. I admire the extent and depth of your knowledge. Have you considered writing a book for people with PF? I would buy one in a flash. And I think any one with PF would too. My best, Jack Re: Sher JackDefinitions are so complicated and everyone defines differently. Nowwe're pretty clear on PF, which is simply the all inclusive group ofdiseases. UIP is also clear as a specific pathologically identifiedform. IPF is used too many ways. Some use it interchangeably with UIPand some use it interchangeably with PF. It would seem technically thatit is any form of PF with unknown cause. But then do we really know thecause of any form of PF?Now UIP is generally IPF because generally its of unknown cause. When wedetermine a probable cause many then says its UIP but not IPF. However,I'm not sure we ever determine beyond doubt a cause. We hypothesizeabout a cause. If one has autoimmune and UIP then we theorize that theautoimmune led to the UIP, yet they could have both been caused by thesame thing or who says it doesn't happen the other way around.All the treatment answers we have are anecdotal, based on experiencesand stories, not based on scientific evidence or clinical trials. Thatdoes not mean they don't work. It simply means we are lacking in termsof knowledge of when they work versus when they don't and why they work.We know that many people do report benefit of Imuran and Prednisone whenused for PF. This board reflects that with 33% of the members onPrednisone and believing it is helping and some additional number nowoff but feeling they were helped. We have beliefs as to whatdistinguishes those it helps versus those it doesn't. But those beliefsare not necessarily accurate. Often too they may be after the factdeterminations when up front the diagnosis may not even be complete.Many members here keep adding diseases to their signature as time goeson. Are those new diseases they developed or were they there all thetime but just not yet diagnosed. Autoimmune diseases can lurk at lowlevels for a long time. Five years ago my neurologist suspected me of anautoimmune. All those years everyone said "no." Now in 2008, I'm againsuspected of having one. So, have I had it for 5 years? Might my UIP nothave developed had it been treated 5 years ago? Might I have just gottenit? Who knows? It just shows again how little we do know.> > > >> > > > Well, I had the bloodwork and the GSE done and the last cameback> > > > unsatisfactory. ........the results are going in to ShandsEvaluation> > > > Team this morning and my doctor told me to expect furthertesting.> > > >> > > >> > > > Did anyone here ever have an Upper Gi? can you tell me what itis> > > like,> > > > please. The Gastric Stomach Emptying Study was strange. Actually> > > > eating the scrambled eggs was the worst...they were terrible!!!and> > it> > > > turns out that I only have 29% of the 60% expected for someonemy> > > age..> > > > in emptying speed over 60 minutes (that is how long it issupposed> > to> > > > take)....Iam supposed tp empty my stomach much faster than I am,> > > > evidently. I was put on reglan years ago for problems and have> > > > absolutely no symptoms or problems since, but I am wonderingabout> > my> > > > next step - a friend told me that the Upper Gi would probably beit.> > > >> > > > Thanks,> > > > Kathy fl> > > > pf.4/07> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Jack I would like to second what Bruce has said at the end of this note. By all means go to a center researching IPF and talk to them. I personally have been to the Center in Pittsburg and the University of Chicago. Both were knowledgable, confident and informative. I was at UC Monday of this week and the doctor looked at me and say well there is really nothing we can give you for this disease but here are two prescriptions. One for a CTScan and one for pulmonary rehab. Stay healthy and we can test you for a transplant. Most other doctors cannot look you in the face and say there is nothing I can give you for the disease. The doctor that diagnosed me could not even look me in the eye to tell me what I had or what it meant. I came away from Monday feeling better about what I was doing but knowing very little more than when I went in. Sure did make me feel better however. Fay IPF06/06 IL Re: Sher JackNo no no no book. If I did it would be titled "How Little Any of Us Knowabout PF".The death number I last saw was about double the one you quoted.Someone as knowledgeable about any of this disease stated to me sometimeback that he would trust fewer than 100 Pulmonologists in this countrywith PF. I know I wouldn't personally trust my diagnosis unlessconfirmed by a major teaching hospital, preferably one of the 13 IPFCenters of Excellence.Yes, I'm sure many have died without ever being diagnosed. However, I'mseeing some of the opposite now too in seeing people diagnosed bydoctors with questionable knowledge of the disease and not really havingit.Jack-I don't know when or how your diagnosis was made but if I felt that"my pulmo belongs to the ignorants" I would absolutely see someone else.A trip to a major teaching hospital or center for IPF is only a one dayvisit generally to have so much more information than you havecurrently. How are your oxygen saturation levels? Are they consistentwith the diagnosis?I advise everyone that if you aren't confident in your pulmonologist orcomfortable with your diagnosis get more help. Please.> > > > >> > > > > Well, I had the bloodwork and the GSE done and the last came> back> > > > > unsatisfactory. ........the results are going in to Shands> Evaluation> > > > > Team this morning and my doctor told me to expect further> testing.> > > > >> > > > >> > > > > Did anyone here ever have an Upper Gi? can you tell me what it> is> > > > like,> > > > > please.. The Gastric Stomach Emptying Study was strange.Actually> > > > > eating the scrambled eggs was the worst...they wereterrible!!!> and> > > it> > > > > turns out that I only have 29% of the 60% expected for someone> my> > > > age..> > > > > in emptying speed over 60 minutes (that is how long it is> supposed> > > to> > > > > take)....Iam supposed tp empty my stomach much faster than Iam,> > > > > evidently. I was put on reglan years ago for problems and have> > > > > absolutely no symptoms or problems since, but I am wondering> about> > > my> > > > > next step - a friend told me that the Upper Gi would probablybe> it.> > > > >> > > > > Thanks,> > > > > Kathy fl> > > > > pf.4/07> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Bruce, I will be locating to North Carolina near Duke University sometime later this year, in part so I can have access to Dr. on, hopefully, or some one like him. The climate is milder than Maine in the winter, but hotter in the summer. But then Maine over the past few years now requires air conditioning. The first diagnosis of IPF was based on x-rays and ct scans. The second of UIP was made a month ago by biopsy. From this, I assume I have fibrosis of one kind or another. My oxygen saturation remains between 96 and 98 normally. Upon climbing a shallow (for Maine) hill in the neighborhood, it drips to 90 or 88, but is back to 96/98 in 2.5 seconds. I think this is good. I live in a two story house with my office on the second floor, so I do a lot of ups and downs the stairs during the day. This doesn't bother me. I have noticed lately that I feel tired and drowsy around mid-afternoon. If I lay down to rest, I fall asleep without being aware of it. Reading the posts of so many with so many severe problems, I am embarrassed to talk about myself. Most of what I complain of could equally be the effect of being 79 years old. Again, thanks for you advice. Jack Re: Sher JackNo no no no book. If I did it would be titled "How Little Any of Us Knowabout PF".The death number I last saw was about double the one you quoted.Someone as knowledgeable about any of this disease stated to me sometimeback that he would trust fewer than 100 Pulmonologists in this countrywith PF. I know I wouldn't personally trust my diagnosis unlessconfirmed by a major teaching hospital, preferably one of the 13 IPFCenters of Excellence.Yes, I'm sure many have died without ever being diagnosed. However, I'mseeing some of the opposite now too in seeing people diagnosed bydoctors with questionable knowledge of the disease and not really havingit.Jack-I don't know when or how your diagnosis was made but if I felt that"my pulmo belongs to the ignorants" I would absolutely see someone else.A trip to a major teaching hospital or center for IPF is only a one dayvisit generally to have so much more information than you havecurrently. How are your oxygen saturation levels? Are they consistentwith the diagnosis?I advise everyone that if you aren't confident in your pulmonologist orcomfortable with your diagnosis get more help. Please.> > > > >> > > > > Well, I had the bloodwork and the GSE done and the last came> back> > > > > unsatisfactory. ........the results are going in to Shands> Evaluation> > > > > Team this morning and my doctor told me to expect further> testing.> > > > >> > > > >> > > > > Did anyone here ever have an Upper Gi? can you tell me what it> is> > > > like,> > > > > please.. The Gastric Stomach Emptying Study was strange.Actually> > > > > eating the scrambled eggs was the worst...they wereterrible!!!> and> > > it> > > > > turns out that I only have 29% of the 60% expected for someone> my> > > > age..> > > > > in emptying speed over 60 minutes (that is how long it is> supposed> > > to> > > > > take)....Iam supposed tp empty my stomach much faster than Iam,> > > > > evidently. I was put on reglan years ago for problems and have> > > > > absolutely no symptoms or problems since, but I am wondering> about> > > my> > > > > next step - a friend told me that the Upper Gi would probablybe> it.> > > > >> > > > > Thanks,> > > > > Kathy fl> > > > > pf.4/07> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Thanks, . I mentioned in my reply to Bruce that later this year I will be relocating to North Carolina near Duke University and, hopefull, Dr. on. Jack Re: Sher JackNo no no no book. If I did it would be titled "How Little Any of Us Knowabout PF".The death number I last saw was about double the one you quoted.Someone as knowledgeable about any of this disease stated to me sometimeback that he would trust fewer than 100 Pulmonologists in this countrywith PF. I know I wouldn't personally trust my diagnosis unlessconfirmed by a major teaching hospital, preferably one of the 13 IPFCenters of Excellence.Yes, I'm sure many have died without ever being diagnosed. However, I'mseeing some of the opposite now too in seeing people diagnosed bydoctors with questionable knowledge of the disease and not really havingit.Jack-I don't know when or how your diagnosis was made but if I felt that"my pulmo belongs to the ignorants" I would absolutely see someone else.A trip to a major teaching hospital or center for IPF is only a one dayvisit generally to have so much more information than you havecurrently. How are your oxygen saturation levels? Are they consistentwith the diagnosis?I advise everyone that if you aren't confident in your pulmonologist orcomfortable with your diagnosis get more help. Please.> > > > >> > > > > Well, I had the bloodwork and the GSE done and the last came> back> > > > > unsatisfactory. ........the results are going in to Shands> Evaluation> > > > > Team this morning and my doctor told me to expect further> testing.> > > > >> > > > >> > > > > Did anyone here ever have an Upper Gi? can you tell me what it> is> > > > like,> > > > > please.. The Gastric Stomach Emptying Study was strange.Actually> > > > > eating the scrambled eggs was the worst...they wereterrible!!!> and> > > it> > > > > turns out that I only have 29% of the 60% expected for someone> my> > > > age..> > > > > in emptying speed over 60 minutes (that is how long it is> supposed> > > to> > > > > take)....Iam supposed tp empty my stomach much faster than Iam,> > > > > evidently. I was put on reglan years ago for problems and have> > > > > absolutely no symptoms or problems since, but I am wondering> about> > > my> > > > > next step - a friend told me that the Upper Gi would probablybe> it.> > > > >> > > > > Thanks,> > > > > Kathy fl> > > > > pf.4/07> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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