Guest guest Posted September 25, 2009 Report Share Posted September 25, 2009 Walt,That is terrible! Your wife leaving just because you are sick! I am so sorry to hear that.I'm a single mom and my kids and I were really really scared in the beginning and shared tears together. But I told my kids that though this is a serious disease, we are going to HOPE for the best and still try to live a normal life as possible. I told them this is an opportunity for us to grow and learn in a different direction. It's good for them to see that life sometimes doesn't turn out they way you planned. We were always close, but we have grown even closer and we check in with each more often than we used to. They are much more helpful too.You need your son by your side. He can definitely deal with his dad having a serious health condition and be better for it. His mom pulling him away from you is just wrong! C_53_Familial IPF_5/09Washington From: Walt <island_walt@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Friday, September 25, 2009 3:09:12 PMSubject: Re: New Online Support Group has been created (Leanne) LeanneDo you think this would be appropriate for my son he just turned 17? He lives with me and in the last 3 years he had my DX and his Mom deciding it was too much and left and now were divorced. I know he is dealing with a lot of things. I just want to be careful about to much drama. Thanks Walt (52) on Whidbey IPF,Nsip.Uip. 06 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow Subject: New Online Support Group has been createdTo: "Breathe Support Caregivers" <Breathe-SupportCare givers@yahoogrou ps.com>, "Breathe-Support Grief" <Breathe-SupportGrie f (AT) yahoogroups (DOT) com>, "Support" <breathe-support@ yahoogroups. com>Date: Thursday, September 24, 2009, 10:52 AM Hello all, Just wanted to let you know that a new Online support group has been created. This group is for children and young adults whose life has been affected by pulmonary fibroisis. We are asking to keep the age limit of the group to 25 and under. (my daughter) wanted to start this group because she felt she had no place to go to talk about what was going on inside her when I was diagnosed back in 2003. who is 22 will be the moderator. Here's the link: http://health. groups.yahoo. com/group/ Breathe-SupportF amily/ If you know of any children or young adults who you feel will benefit from this type of support group, please pass along the link. Thank you. Leanne Storch Executive Director Pulmonary Fibrosis Foundation 1332 N. Halsted, Suite 201 Chicago, IL 60642-2642 www.pulmonaryfibros is.org P F A cure is just a breath away Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2009 Report Share Posted October 7, 2009 Hello Ken, Dr. Noble is at Duke - he is the Chief of Pulmonary, Critical Care. I was referred to him 2 years ago. I travel from Atlanta to Raleigh/Durham (Duke) every 3 months to see Dr. Noble. Dorothy Reinecke Fayetteville, GA 66 - DX VATS 7/05 - UIP 7/05 Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow." From: Breathe-Support [mailto:Breathe-Support ] On Behalf Of Ken's RR MailSent: Wednesday, October 07, 2009 11:06 AMTo: Breathe-Support Subject: Beth Hi Beth, I know you go to Duke and I was wondering if you know if Dr. Nobel is in the Pulmonary group. I was originally scheduled to go to him at Yale School of Medicine for a second opinion. I was never able to make the appointment because he was transferring to Duke and no longer taking new patients at that time. I was just curious. He was pursuing familial aspects of the disease I believe. I was just going over my early note after I was diagnosed and saw his name and thought I’d ask you if you knew if he was there. Ken Baker 67 UIP/IPF 12/05 New Hampshire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 LOL - what WAS that yellow thing? Today we had a stunningly beautiful day. Around 70 degrees and sunny. The dogs got to go for walks, and a good time was had by all. Hope your Sunday is lovely. B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. To: Breathe-Support Sent: Sat, November 14, 2009 7:45:10 PMSubject: Re: Beth Barb, It did stop raining and the weirdest thing happened.... there was this really bright thing in the sky....it was round and it gave off alot of light....the sky was blue and there were only a few white puffy clouds... I don't know what that bright, round yellow thing was that gave off all the light though. Really strange....LOL Did things improve by you? Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Barbara McD <bamny (AT) yahoo (DOT) com>To: breathe-support@ yahoogroups. comSent: Sat, November 14, 2009 6:58:49 PMSubject: Beth Did it stop raining by you, Beth?B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 14, 2009 Report Share Posted November 14, 2009 Beth, That bright yellow thing in the sky....The sun? We haven't seen it a week either!!!! Maybe it'll show up here soon. What a dreary week , muggy and London sort of cold. Sorry to you guys in England! The dampness really causes me breathing problems!!! I can't wait for some dry days! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Beth wrote:  Barb, It did stop raining and the weirdest thing happened....there was this really bright thing in the sky....it was round and it gave off alot of light....the sky was blue and there were only a few white puffy clouds... I don't know what that bright, round yellow thing was that gave off all the light though. Really strange....LOL  Did things improve by you?  Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08   From: Barbara McD <bamny (AT) yahoo (DOT) com> To: breathe-support Sent: Sat, November 14, 2009 6:58:49 PM Subject: Beth  Did it stop raining by you, Beth? B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC    Attitude is everything.  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 15, 2009 Report Share Posted November 15, 2009 The bright yellow thing in the sky is here today!!! Yipee! Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: BethTo: Breathe-Support Date: Saturday, November 14, 2009, 11:49 PM Beth, That bright yellow thing in the sky....The sun?We haven't seen it a week either!!!! Maybe it'll show up here soon. What a drearyweek , muggy and London sort of cold. Sorry to you guys in England!The dampness really causes me breathing problems!!! I can't wait for some dry days! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Beth wrote: Barb, It did stop raining and the weirdest thing happened.... there was this really bright thing in the sky....it was round and it gave off alot of light....the sky was blue and there were only a few white puffy clouds... I don't know what that bright, round yellow thing was that gave off all the light though. Really strange....LOL Did things improve by you? Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Barbara McD <bamny (AT) yahoo (DOT) com>To: breathe-support@ yahoogroups. comSent: Sat, November 14, 2009 6:58:49 PMSubject: Beth Did it stop raining by you, Beth?B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 Jane Side effects are similar to regular flu shot. Possible side effects include soreness, redness, tenderness, or swelling where you got the shot. Also, occasional headache, muscle aches, fever or nausea for no more than one or two days. > > > Beth > > Do you think the side effects of the H1N1 vaccine are known? > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 22, 2009 Report Share Posted November 22, 2009 Jane Sorry hit enter too soon. Severe reaction would be an allergic reaction and generally only for those allergic to eggs. It would include difficulty breathing, hoarseness, wheezing, hives, paleness, weakness, dizziness, or rapid heart rate. It's the typical reaction of an allergic reaction to anything and is rare. While the trials have been only for a short period (although most flu vaccine trials are), there haven't been any problems with unexpected reactions or risks to this point. The other warning is the same as any flu vaccine and that is anyone with GBS (Guillain Barre Syndrome) needs to consult their doctor. > > > > > > Beth > > > > Do you think the side effects of the H1N1 vaccine are known? > > > > Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Jane, The side effects of the H1N1 vaccine are no different from the side effects of the seasonal flu vaccine. The thing to remember Jane is that if H1N1 had appeared two or three months earlier than it did, it would have been included in the seasonal flu vaccine and there would not have been any controversy about it. It's only because it first arose in April, too late to be included in this years seasonal shot that there has been such tremendous uproar. Viruses arise, shift, mutate every year and the WHO and the CDC etc do there best to decide which flu viruses are going to be a threat the following year. Those are the ones that are included in vaccine we get every autumn. H1N1 arrived on the scene too late for that and so a separate shot became necessary. My sister was in charge of the H1N1 vaccine trials on pregnant women at Duke earlier this fall. They had no side effects from the shot other than the typical soreness and redness at the injection site. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Sun, November 22, 2009 10:08:36 PMSubject: Beth Beth Do you think the side effects of the H1N1 vaccine are known? Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 great question Jane Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: BethTo: Breathe-Support Date: Sunday, November 22, 2009, 10:08 PM Beth Do you think the side effects of the H1N1 vaccine are known? Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 thanks for the explanation mary beth Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: BethTo: Breathe-Support Date: Monday, November 23, 2009, 7:47 AM Jane, The side effects of the H1N1 vaccine are no different from the side effects of the seasonal flu vaccine. The thing to remember Jane is that if H1N1 had appeared two or three months earlier than it did, it would have been included in the seasonal flu vaccine and there would not have been any controversy about it. It's only because it first arose in April, too late to be included in this years seasonal shot that there has been such tremendous uproar. Viruses arise, shift, mutate every year and the WHO and the CDC etc do there best to decide which flu viruses are going to be a threat the following year. Those are the ones that are included in vaccine we get every autumn. H1N1 arrived on the scene too late for that and so a separate shot became necessary. My sister was in charge of the H1N1 vaccine trials on pregnant women at Duke earlier this fall. They had no side effects from the shot other than the typical soreness and redness at the injection site. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: pianolady_musicgirl <jjarrett (AT) optilink (DOT) us>To: Breathe-Support@ yahoogroups. comSent: Sun, November 22, 2009 10:08:36 PMSubject: Beth Beth Do you think the side effects of the H1N1 vaccine are known? Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Jane, I see that you have uip and have had it awhile. Can you tell me alittle about yourself and how you have been doing through this.To: Breathe-Support Sent: Mon, November 23, 2009 8:27:08 AMSubject: Re: Beth great question Jane Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org From: pianolady_musicgirl <jjarrett (AT) optilink (DOT) us>Subject: BethTo: Breathe-Support@ yahoogroups. comDate: Sunday, November 22, 2009, 10:08 PM Beth Do you think the side effects of the H1N1 vaccine are known? Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Hi Beth, I had read somewhere that three years ago you had heart failure. My friend just got out of the hospital with heart failure and pf. My question is the doctors here in illinois said if he starts to do regular cardio exercises his heart could possibly return to normal size. he was diagnoised with mild cardio whaterver that is. Hes afraid to talk about it but doesn't mind help with research.He bought a treadmill and was told to go slow but he thinks the faster he goes the faster hell get better. Men ,you can't live with them and you can't kill them sharon p asthma ph 2008 Subject: Re: BethTo: Breathe-Support Date: Monday, November 23, 2009, 6:47 AM Jane, The side effects of the H1N1 vaccine are no different from the side effects of the seasonal flu vaccine. The thing to remember Jane is that if H1N1 had appeared two or three months earlier than it did, it would have been included in the seasonal flu vaccine and there would not have been any controversy about it. It's only because it first arose in April, too late to be included in this years seasonal shot that there has been such tremendous uproar. Viruses arise, shift, mutate every year and the WHO and the CDC etc do there best to decide which flu viruses are going to be a threat the following year. Those are the ones that are included in vaccine we get every autumn. H1N1 arrived on the scene too late for that and so a separate shot became necessary. My sister was in charge of the H1N1 vaccine trials on pregnant women at Duke earlier this fall. They had no side effects from the shot other than the typical soreness and redness at the injection site. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: pianolady_musicgirl <jjarrett (AT) optilink (DOT) us>To: Breathe-Support@ yahoogroups. comSent: Sun, November 22, 2009 10:08:36 PMSubject: Beth Beth Do you think the side effects of the H1N1 vaccine are known? Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Sharon, I'm sorry to hear about your friend. I would strongly suggest that he not start exercising all by himself without any medical supervision. I did have congestive heart failure back in June of 2006. My heart issues at the time were secondary to my pulmonary problems. Once my lung disease was stablized and I was on oxygen the heart failure resolved on it's own. When I started exercising in 2006 it was in a pulmonary rehab program. I would strongly recommend your friend seek out either a cardiac or pulmonary rehab. Exercise is likely to help him but it's vital that he get the supervision he needs in order to avoid hurting himself! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, November 23, 2009 11:40:59 AMSubject: Re: Beth Hi Beth, I had read somewhere that three years ago you had heart failure. My friend just got out of the hospital with heart failure and pf. My question is the doctors here in illinois said if he starts to do regular cardio exercises his heart could possibly return to normal size. he was diagnoised with mild cardio whaterver that is. Hes afraid to talk about it but doesn't mind help with research.He bought a treadmill and was told to go slow but he thinks the faster he goes the faster hell get better. Men ,you can't live with them and you can't kill them sharon p asthma ph 2008 From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: BethTo: Breathe-Support@ yahoogroups. comDate: Monday, November 23, 2009, 6:47 AM Jane, The side effects of the H1N1 vaccine are no different from the side effects of the seasonal flu vaccine. The thing to remember Jane is that if H1N1 had appeared two or three months earlier than it did, it would have been included in the seasonal flu vaccine and there would not have been any controversy about it. It's only because it first arose in April, too late to be included in this years seasonal shot that there has been such tremendous uproar. Viruses arise, shift, mutate every year and the WHO and the CDC etc do there best to decide which flu viruses are going to be a threat the following year. Those are the ones that are included in vaccine we get every autumn. H1N1 arrived on the scene too late for that and so a separate shot became necessary. My sister was in charge of the H1N1 vaccine trials on pregnant women at Duke earlier this fall. They had no side effects from the shot other than the typical soreness and redness at the injection site. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: pianolady_musicgirl <jjarrett (AT) optilink (DOT) us>To: Breathe-Support@ yahoogroups. comSent: Sun, November 22, 2009 10:08:36 PMSubject: Beth Beth Do you think the side effects of the H1N1 vaccine are known? Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 thanks Beth! sharon p asthma ph 2008 From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: BethTo: Breathe-Support@ yahoogroups. comDate: Monday, November 23, 2009, 6:47 AM Jane, The side effects of the H1N1 vaccine are no different from the side effects of the seasonal flu vaccine. The thing to remember Jane is that if H1N1 had appeared two or three months earlier than it did, it would have been included in the seasonal flu vaccine and there would not have been any controversy about it. It's only because it first arose in April, too late to be included in this years seasonal shot that there has been such tremendous uproar. Viruses arise, shift, mutate every year and the WHO and the CDC etc do there best to decide which flu viruses are going to be a threat the following year. Those are the ones that are included in vaccine we get every autumn. H1N1 arrived on the scene too late for that and so a separate shot became necessary. My sister was in charge of the H1N1 vaccine trials on pregnant women at Duke earlier this fall. They had no side effects from the shot other than the typical soreness and redness at the injection site. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: pianolady_musicgirl <jjarrett (AT) optilink (DOT) us>To: Breathe-Support@ yahoogroups. comSent: Sun, November 22, 2009 10:08:36 PMSubject: Beth Beth Do you think the side effects of the H1N1 vaccine are known? Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 , When I was diagnosed in 1998, my first pulmodude insisted that I had to go on huge amounts of prednisone. He wanted to prescribe 40 mg and I said no so he prescribed 20mg. I was on the medication for so long so I had all the bad side effects: weight gain, skipping heart beat, bad moods, always hungry, etc. Sometimes my chest x-rays would clear up and look almost normal. Later I noticed my xrays looked like: short lungs. This pulmodude only ordered the diffusion part of the PFTs along with spirometry. When my first pulmo retired, I went to another one who prescribed the entire PFT. By then I had had the lung biopsy and it was diagnosed as NSIP. The second pulmodude asked me if I wanted to go to Emory in Atl for a second opinion and I said yes. I took my lung biopsy slides down to Emory and I was then diagnosed UIP/IPF/ Of course, I was very confused about the diagnosis. The second time I went to Emory, the pulmodude wented me to take Actimunne injections 3x a week. He told me that they would help. I was to stay on the prednisone until he saw me again and I was then used to the Actimunne. When I went back again, I was then told I could wean off of the prednisone and to keep taking the Actimunne. The date I started weaning off of the pred was May 25th, 2004. I was still on the Actimunne injections 3x per week. On June 25, 2004, my husband took me to the emergency room because of my gall bladder. At the time, I wasn't real healthy because: I should have had my gall bladder surgery 8 or9 months earlier but my doctor didn't think it was important and he wouldn't approve me for surgery; I was taking the Actimunne which is interferon and it brought my immune system down; I was not exercising at my class that I had been in since 1999; my mother had passed away 6 months previously to June, 2004. After the gall bladder surgery at the end of June 2004, I spent the night in the hospital as a precaution. During the night I had trouble breathing so at 6 am the next morning I was taken to ICU and placed on the vent. I had not worn my CPAP that night because the nurse had moved the entire room around and I couldn't reach it. I was by myself because my husband had gone home. I spent 6 months in the hospital. I don't remember anything from the time I was in the emrgency room until sometime near the end of September 2004 when I woke up in Emory Hospital ICU. I had to learn how to walk, eat, talk, move around, turn over in the bed, use my hands, etc. Everything. I can do everything now. And more. And I am so much better than I was in 2004 because I am taking extra good care of myself. And I am using 2 to 3 liters of oxygen 24/7. I hardly notice that my IPF has the UIP pattern in my lungs. I just notice that I become short of breath (SOB) if I move too fast or do too much or overexert myself. I try to go to my exercise class at least 3 days per week where I am monitored (BP, saturation checked, write down what exericse I do) using oxygen. I make sure that I take vitamins and NAC; I try to eat healthy food; I try to get plenty of rest; when I am tired I rest; I try to avoid being around crowds and children. I have some positive activities that I enjoy. I was diagnosed in 1998 (SOB was the main symptom). Since I made it through the acute respiratory distress syndrome (ARDS) in 2004, I am going to try to follow the above criteria that seem to help me. One of my doctors told me this: Don't stay in the bed. Another doctor told me this: Don't sit around and watch TV, STAND UP! Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > > >From: pianolady_musicgirl jjarrett (AT) optilink (DOT) us>> >Subject: Beth> >To: Breathe-Support@ yahoogroups. com> >Date: Sunday, November 22, 2009, 10:08 PM> >> >> > > > Beth> >Do you think the side effects of the H1N1 vaccine are known?> >Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Thanks so much Jane. I'm glad you are doing okay. Sounds like you had it pretty tough .You will be my incentive since this is all new to me. What vitamins are you taking and what is NAC?To: Breathe-Support Sent: Mon, November 23, 2009 10:43:17 PMSubject: Re: Beth , When I was diagnosed in 1998, my first pulmodude insisted that I had to go on huge amounts of prednisone. He wanted to prescribe 40 mg and I said no so he prescribed 20mg. I was on the medication for so long so I had all the bad side effects: weight gain, skipping heart beat, bad moods, always hungry, etc. Sometimes my chest x-rays would clear up and look almost normal. Later I noticed my xrays looked like: short lungs. This pulmodude only ordered the diffusion part of the PFTs along with spirometry. When my first pulmo retired, I went to another one who prescribed the entire PFT. By then I had had the lung biopsy and it was diagnosed as NSIP. The second pulmodude asked me if I wanted to go to Emory in Atl for a second opinion and I said yes. I took my lung biopsy slides down to Emory and I was then diagnosed UIP/IPF/ Of course, I was very confused about the diagnosis. The second time I went to Emory, the pulmodude wented me to take Actimunne injections 3x a week. He told me that they would help. I was to stay on the prednisone until he saw me again and I was then used to the Actimunne. When I went back again, I was then told I could wean off of the prednisone and to keep taking the Actimunne. The date I started weaning off of the pred was May 25th, 2004. I was still on the Actimunne injections 3x per week. On June 25, 2004, my husband took me to the emergency room because of my gall bladder. At the time, I wasn't real healthy because: I should have had my gall bladder surgery 8 or9 months earlier but my doctor didn't think it was important and he wouldn't approve me for surgery; I was taking the Actimunne which is interferon and it brought my immune system down; I was not exercising at my class that I had been in since 1999; my mother had passed away 6 months previously to June, 2004. After the gall bladder surgery at the end of June 2004, I spent the night in the hospital as a precaution. During the night I had trouble breathing so at 6 am the next morning I was taken to ICU and placed on the vent. I had not worn my CPAP that night because the nurse had moved the entire room around and I couldn't reach it. I was by myself because my husband had gone home. I spent 6 months in the hospital. I don't remember anything from the time I was in the emrgency room until sometime near the end of September 2004 when I woke up in Emory Hospital ICU. I had to learn how to walk, eat, talk, move around, turn over in the bed, use my hands, etc. Everything. I can do everything now. And more. And I am so much better than I was in 2004 because I am taking extra good care of myself. And I am using 2 to 3 liters of oxygen 24/7. I hardly notice that my IPF has the UIP pattern in my lungs. I just notice that I become short of breath (SOB) if I move too fast or do too much or overexert myself. I try to go to my exercise class at least 3 days per week where I am monitored (BP, saturation checked, write down what exericse I do) using oxygen. I make sure that I take vitamins and NAC; I try to eat healthy food; I try to get plenty of rest; when I am tired I rest; I try to avoid being around crowds and children. I have some positive activities that I enjoy. I was diagnosed in 1998 (SOB was the main symptom). Since I made it through the acute respiratory distress syndrome (ARDS) in 2004, I am going to try to follow the above criteria that seem to help me. One of my doctors told me this: Don't stay in the bed. Another doctor told me this: Don't sit around and watch TV, STAND UP! Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > > >From: pianolady_musicgirl jjarrett (AT) optilink (DOT) us>> >Subject: Beth> >To: Breathe-Support@ yahoogroups. com> >Date: Sunday, November 22, 2009, 10:08 PM> >> >> > > > Beth> >Do you think the side effects of the H1N1 vaccine are known?> >Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 26, 2009 Report Share Posted November 26, 2009 Jane 11 years and still running that is great Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: BethTo: Breathe-Support Date: Monday, November 23, 2009, 10:43 PM , When I was diagnosed in 1998, my first pulmodude insisted that I had to go on huge amounts of prednisone. He wanted to prescribe 40 mg and I said no so he prescribed 20mg. I was on the medication for so long so I had all the bad side effects: weight gain, skipping heart beat, bad moods, always hungry, etc. Sometimes my chest x-rays would clear up and look almost normal. Later I noticed my xrays looked like: short lungs. This pulmodude only ordered the diffusion part of the PFTs along with spirometry. When my first pulmo retired, I went to another one who prescribed the entire PFT. By then I had had the lung biopsy and it was diagnosed as NSIP. The second pulmodude asked me if I wanted to go to Emory in Atl for a second opinion and I said yes. I took my lung biopsy slides down to Emory and I was then diagnosed UIP/IPF/ Of course, I was very confused about the diagnosis. The second time I went to Emory, the pulmodude wented me to take Actimunne injections 3x a week. He told me that they would help. I was to stay on the prednisone until he saw me again and I was then used to the Actimunne. When I went back again, I was then told I could wean off of the prednisone and to keep taking the Actimunne. The date I started weaning off of the pred was May 25th, 2004. I was still on the Actimunne injections 3x per week. On June 25, 2004, my husband took me to the emergency room because of my gall bladder. At the time, I wasn't real healthy because: I should have had my gall bladder surgery 8 or9 months earlier but my doctor didn't think it was important and he wouldn't approve me for surgery; I was taking the Actimunne which is interferon and it brought my immune system down; I was not exercising at my class that I had been in since 1999; my mother had passed away 6 months previously to June, 2004. After the gall bladder surgery at the end of June 2004, I spent the night in the hospital as a precaution. During the night I had trouble breathing so at 6 am the next morning I was taken to ICU and placed on the vent. I had not worn my CPAP that night because the nurse had moved the entire room around and I couldn't reach it. I was by myself because my husband had gone home. I spent 6 months in the hospital. I don't remember anything from the time I was in the emrgency room until sometime near the end of September 2004 when I woke up in Emory Hospital ICU. I had to learn how to walk, eat, talk, move around, turn over in the bed, use my hands, etc. Everything. I can do everything now. And more. And I am so much better than I was in 2004 because I am taking extra good care of myself. And I am using 2 to 3 liters of oxygen 24/7. I hardly notice that my IPF has the UIP pattern in my lungs. I just notice that I become short of breath (SOB) if I move too fast or do too much or overexert myself. I try to go to my exercise class at least 3 days per week where I am monitored (BP, saturation checked, write down what exericse I do) using oxygen. I make sure that I take vitamins and NAC; I try to eat healthy food; I try to get plenty of rest; when I am tired I rest; I try to avoid being around crowds and children. I have some positive activities that I enjoy. I was diagnosed in 1998 (SOB was the main symptom). Since I made it through the acute respiratory distress syndrome (ARDS) in 2004, I am going to try to follow the above criteria that seem to help me. One of my doctors told me this: Don't stay in the bed. Another doctor told me this: Don't sit around and watch TV, STAND UP! Toodles Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> > > >From: pianolady_musicgirl jjarrett (AT) optilink (DOT) us>> >Subject: Beth> >To: Breathe-Support@ yahoogroups. com> >Date: Sunday, November 22, 2009, 10:08 PM> >> >> > > > Beth> >Do you think the side effects of the H1N1 vaccine are known?> >Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl> Quote Link to comment Share on other sites More sharing options...
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