Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 Kay I will say a prayer for you -- and it makes me laugh a little because just before I went into the operating room, I had had an all-day wait in pre-op. I didn't feel well from fasting (I'm diabetic) so I began saying Catholic prayers for myself and prayed for " the best possible outcome for surgery. " At one point I really became the child inside of me " let go and let God " (in my case, to and the sainted Little Flower, Therese). After the surgery, I was groggy in the post-op area and the surgical team was around my table saying " excellent, excellent, you have NO NODES... NO VASCULAR INVASION.... BEAUTIFUL SURGERY... YOU DID BEAUTIFULLY.... " Such smiles. When I groggily said " Did you get it all in the margins? " They laughed, because I had had a mastectomy instead of lumpectomy and the tumor was near the surface of the breast, so they OF COURSE got wide, clean margins. They said " yes. " One of the surgeons was saying " Excellent, excellent. " Though I don't want to get your hopes unreasonably up in case you don't have the same outcome, there was a message just previous to this that said " prayer changes things. " We have to live, and believe, I think... So I really WILL put my hopes and prayers with you, and We'll see... But whatever your outcome, there will be a treatment plan to get it, in God's hands, so don't get all shook. Janie > > > Thank you for the message it was great just knowing someone out there > > isnt afraid to talk or discuss this issue. I received a phone call > > thursday and next wednesday they begin draining and poking and taking > > things out, and friday the pathologist and the surgeon will meet with > > us, and we decide iam glad they arent wasting any time just nervous on > > my part. Please say a prayer it hasnt traveled to far into the lymph > > nodes thats my main concern. So once again thanks for letting me vent > > a bit take care and keep in touch! Marik Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 janie8002000 wrote: > > Kay > > I will say a prayer for you -- and it makes me laugh a little because > just before I went into the operating room, I had had an all-day wait > in pre-op. I didn't feel well from fasting (I'm diabetic) so I began > saying Catholic prayers for myself and prayed for " the best possible > outcome for surgery. " At one point I really became the child inside > of me " let go and let God " (in my case, to and the sainted > Little Flower, Therese). > > After the surgery, I was groggy in the post-op area and the surgical > team was around my table saying " excellent, excellent, you have NO > NODES... NO VASCULAR INVASION.... BEAUTIFUL SURGERY... YOU DID > BEAUTIFULLY.... " Such smiles. When I groggily said " Did you get it > all in the margins? " They laughed, because I had had a mastectomy > instead of lumpectomy and the tumor was near the surface of the > breast, so they OF COURSE got wide, clean margins. They said " yes. " > One of the surgeons was saying " Excellent, excellent. " > > Though I don't want to get your hopes unreasonably up in case you > don't have the same outcome, there was a message just previous to > this that said " prayer changes things. " We have to live, and > believe, I think... > > So I really WILL put my hopes and prayers with you, and > > We'll see... > > But whatever your outcome, there will be a treatment plan to get it, > in God's hands, so don't get all shook. > > Janie > > > > > > > > > Thank you for the message it was great just knowing someone out > there > > > isnt afraid to talk or discuss this issue. I received a phone > call > > > thursday and next wednesday they begin draining and poking and > taking > > > things out, and friday the pathologist and the surgeon will meet > with > > > us, and we decide iam glad they arent wasting any time just > nervous on > > > my part. Please say a prayer it hasnt traveled to far into the > lymph > > > nodes thats my main concern. So once again thanks for letting me > vent > > > a bit take care and keep in touch! Marik > > > > > > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 janie8002000 wrote: > > Kay > > I will say a prayer for you -- and it makes me laugh a little because > just before I went into the operating room, I had had an all-day wait > in pre-op. I didn't feel well from fasting (I'm diabetic) so I began > saying Catholic prayers for myself and prayed for " the best possible > outcome for surgery. " At one point I really became the child inside > of me " let go and let God " (in my case, to and the sainted > Little Flower, Therese). > > After the surgery, I was groggy in the post-op area and the surgical > team was around my table saying " excellent, excellent, you have NO > NODES... NO VASCULAR INVASION.... BEAUTIFUL SURGERY... YOU DID > BEAUTIFULLY.... " Such smiles. When I groggily said " Did you get it > all in the margins? " They laughed, because I had had a mastectomy > instead of lumpectomy and the tumor was near the surface of the > breast, so they OF COURSE got wide, clean margins. They said " yes. " > One of the surgeons was saying " Excellent, excellent. " > > Though I don't want to get your hopes unreasonably up in case you > don't have the same outcome, there was a message just previous to > this that said " prayer changes things. " We have to live, and > believe, I think... > > So I really WILL put my hopes and prayers with you, and > > We'll see... > > But whatever your outcome, there will be a treatment plan to get it, > in God's hands, so don't get all shook. > > Janie > > > > > > > > > Thank you for the message it was great just knowing someone out > there > > > isnt afraid to talk or discuss this issue. I received a phone > call > > > thursday and next wednesday they begin draining and poking and > taking > > > things out, and friday the pathologist and the surgeon will meet > with > > > us, and we decide iam glad they arent wasting any time just > nervous on > > > my part. Please say a prayer it hasnt traveled to far into the > lymph > > > nodes thats my main concern. So once again thanks for letting me > vent > > > a bit take care and keep in touch! Marik > > > > > > * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2004 Report Share Posted October 10, 2004 Welcome Marik. You are in the right place! Hi my name is Marik (Kay), today i was diagnosed with breast cancer. This may result more than likely to loose my right breast. I felt simply stunned as if this couldnt happen to me so iam getting all the support i can through groups just like this one. Iam happy to share i have a good support system at home. I am looking forward to hearing from others and how they are dealing with this issue. Thank you so much! Marik Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi Lynn -- Since you are here in OC...let me spout a little....(*wink) check out www.droliak.com if you register there, I can send you a patient questionnaire on Monday when I get to work, and we can then converse more about the surgery, Dr. Oliak's results and outcomes, the program we (his patients, not everyne on this board) follow, costs, financing, insurance...all that good stuff. good luck to you! and talk to you soon. jb-bb lynn_cummins2005 wrote: Hi. My name is Lynn and I am looking for information on Orange County gastric bypass surgeons. Please share your resources with me. I have BC/BS insurance. Is is easy to get approved for surgery? How long does it take to get approved. I definately want this surgery. My weight is 342. Lynn We are a very active support group. If the email becomes overwhelming, please change your setting to NO EMAIL! Please stay with us! Any questions? Please contact Group Creator/Moderator Robyn@... To visit your group on the web, go to: http://groups.yahoo.com/group/GastricBypass-LOSERS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi Lynn -- Since you are here in OC...let me spout a little....(*wink) check out www.droliak.com if you register there, I can send you a patient questionnaire on Monday when I get to work, and we can then converse more about the surgery, Dr. Oliak's results and outcomes, the program we (his patients, not everyne on this board) follow, costs, financing, insurance...all that good stuff. good luck to you! and talk to you soon. jb-bb lynn_cummins2005 wrote: Hi. My name is Lynn and I am looking for information on Orange County gastric bypass surgeons. Please share your resources with me. I have BC/BS insurance. Is is easy to get approved for surgery? How long does it take to get approved. I definately want this surgery. My weight is 342. Lynn We are a very active support group. If the email becomes overwhelming, please change your setting to NO EMAIL! Please stay with us! Any questions? Please contact Group Creator/Moderator Robyn@... To visit your group on the web, go to: http://groups.yahoo.com/group/GastricBypass-LOSERS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi Lynn -- Since you are here in OC...let me spout a little....(*wink) check out www.droliak.com if you register there, I can send you a patient questionnaire on Monday when I get to work, and we can then converse more about the surgery, Dr. Oliak's results and outcomes, the program we (his patients, not everyne on this board) follow, costs, financing, insurance...all that good stuff. good luck to you! and talk to you soon. jb-bb lynn_cummins2005 wrote: Hi. My name is Lynn and I am looking for information on Orange County gastric bypass surgeons. Please share your resources with me. I have BC/BS insurance. Is is easy to get approved for surgery? How long does it take to get approved. I definately want this surgery. My weight is 342. Lynn We are a very active support group. If the email becomes overwhelming, please change your setting to NO EMAIL! Please stay with us! Any questions? Please contact Group Creator/Moderator Robyn@... To visit your group on the web, go to: http://groups.yahoo.com/group/GastricBypass-LOSERS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 I just signed up on the Dr Oliak website. I am floored by the huge weight loss. Does that happen to everyone? Lynn > Hi. My name is Lynn and I am looking for information on Orange County > gastric bypass surgeons. > > Please share your resources with me. I have BC/BS insurance. Is is > easy to get approved for surgery? How long does it take to get approved. > > I definately want this surgery. My weight is 342. > > Lynn > > > > > We are a very active support group. > If the email becomes overwhelming, > please change your setting to NO EMAIL! > Please stay with us! > > Any questions? > Please contact Group Creator/Moderator > Robyn@G... > > To visit your group on the web, go to: > http://groups.yahoo.com/group/GastricBypass-LOSERS/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 I just signed up on the Dr Oliak website. I am floored by the huge weight loss. Does that happen to everyone? Lynn > Hi. My name is Lynn and I am looking for information on Orange County > gastric bypass surgeons. > > Please share your resources with me. I have BC/BS insurance. Is is > easy to get approved for surgery? How long does it take to get approved. > > I definately want this surgery. My weight is 342. > > Lynn > > > > > We are a very active support group. > If the email becomes overwhelming, > please change your setting to NO EMAIL! > Please stay with us! > > Any questions? > Please contact Group Creator/Moderator > Robyn@G... > > To visit your group on the web, go to: > http://groups.yahoo.com/group/GastricBypass-LOSERS/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 ....how do I answer that without sounding arrogant.... The first testamonial on his website is me...Dos everyone lost that much weight...no. But I was quite large, and had a lot of weight to lose. The surgery works for everyone who is willing to put forth the effort to explore themselves, their emotions, what got them to obesity (why did you eat), and are willing to do a 180 and change their lives forever. We have all heard that 'it's a lifestyle change' and we all think we are ready for that change. But we thought we were ready every time we went to WW or Craig...the difference is that when things got tough (stress in life) we could go back to our old ways with those other programs. If you choose to haveWLS, there is no going back. When life gets stressful -- you don't get to escape with foo. You can't satisfy your frustrations by eating. So -- when life gets tough...it actually gets tougher because you get to add the need to find a new outlet for your frustrations. And that's not something that any of us really work on, until the time comes and we need the outlet. And when that time comes, it's because we are already stressed out...does this sound like a vicious circle? WLS can be a wonderous thing...but don't think it's easy. There are so many changes one needs to make to be successful...not just in losing the weight, but in becoming healthy for the rest of ones' life! OK -- I gotta hit Costco -- I'm outta here! Love you all! blessings, jb-bb lynn_cummins2005 wrote: I just signed up on the Dr Oliak website. I am floored by the huge weight loss. Does that happen to everyone? Lynn > Hi. My name is Lynn and I am looking for information on Orange County > gastric bypass surgeons. > > Please share your resources with me. I have BC/BS insurance. Is is > easy to get approved for surgery? How long does it take to get approved. > > I definately want this surgery. My weight is 342. > > Lynn > > > > > We are a very active support group. > If the email becomes overwhelming, > please change your setting to NO EMAIL! > Please stay with us! > > Any questions? > Please contact Group Creator/Moderator > Robyn@G... > > To visit your group on the web, go to: > http://groups.yahoo.com/group/GastricBypass-LOSERS/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 ....how do I answer that without sounding arrogant.... The first testamonial on his website is me...Dos everyone lost that much weight...no. But I was quite large, and had a lot of weight to lose. The surgery works for everyone who is willing to put forth the effort to explore themselves, their emotions, what got them to obesity (why did you eat), and are willing to do a 180 and change their lives forever. We have all heard that 'it's a lifestyle change' and we all think we are ready for that change. But we thought we were ready every time we went to WW or Craig...the difference is that when things got tough (stress in life) we could go back to our old ways with those other programs. If you choose to haveWLS, there is no going back. When life gets stressful -- you don't get to escape with foo. You can't satisfy your frustrations by eating. So -- when life gets tough...it actually gets tougher because you get to add the need to find a new outlet for your frustrations. And that's not something that any of us really work on, until the time comes and we need the outlet. And when that time comes, it's because we are already stressed out...does this sound like a vicious circle? WLS can be a wonderous thing...but don't think it's easy. There are so many changes one needs to make to be successful...not just in losing the weight, but in becoming healthy for the rest of ones' life! OK -- I gotta hit Costco -- I'm outta here! Love you all! blessings, jb-bb lynn_cummins2005 wrote: I just signed up on the Dr Oliak website. I am floored by the huge weight loss. Does that happen to everyone? Lynn > Hi. My name is Lynn and I am looking for information on Orange County > gastric bypass surgeons. > > Please share your resources with me. I have BC/BS insurance. Is is > easy to get approved for surgery? How long does it take to get approved. > > I definately want this surgery. My weight is 342. > > Lynn > > > > > We are a very active support group. > If the email becomes overwhelming, > please change your setting to NO EMAIL! > Please stay with us! > > Any questions? > Please contact Group Creator/Moderator > Robyn@G... > > To visit your group on the web, go to: > http://groups.yahoo.com/group/GastricBypass-LOSERS/ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 How much weight did you lose? Have you undergone plastics? What were your costs and your surgeon's name. Does he have a website? Kristy > > Hi. My name is Lynn and I am looking for information on Orange County > > gastric bypass surgeons. > > > > Please share your resources with me. I have BC/BS insurance. Is is > > easy to get approved for surgery? How long does it take to get approved. > > > > I definately want this surgery. My weight is 342. > > > > Lynn > > > > > > > > > > We are a very active support group. > > If the email becomes overwhelming, > > please change your setting to NO EMAIL! > > Please stay with us! > > > > Any questions? > > Please contact Group Creator/Moderator > > Robyn@G... > > > > To visit your group on the web, go to: > > http://groups.yahoo.com/group/GastricBypass-LOSERS/ > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Welcome Lynn Please open a photo album to store your current photos. The after photos that I have viewed are inspiring. Sharon > Hi. My name is Lynn and I am looking for information on Orange County > gastric bypass surgeons. > > Please share your resources with me. I have BC/BS insurance. Is is > easy to get approved for surgery? How long does it take to get approved. > > I definately want this surgery. My weight is 342. > > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2005 Report Share Posted August 12, 2005 Hi Lynn!!!! Welcome to the group!!!! Glad you are here!!! My Dr. Is DR. Milton Owens in Orange, CA. He is a good DR I also know that Dr. Oliak is a great DR. (cute too!!!) If I was having surgery today I would go with Dr. Oliak. (own personal reasons) They are both out of Chapman Medical Center in Orange, CA the hospital is on Chapman at the 55 fwy. Please come join us and chat with us whenever!!! If you have any questions we are ere to help!! Hugs!!! > Hi. My name is Lynn and I am looking for information on Orange County > gastric bypass surgeons. > > Please share your resources with me. I have BC/BS insurance. Is is > easy to get approved for surgery? How long does it take to get approved. > > I definately want this surgery. My weight is 342. > > Lynn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2007 Report Share Posted August 2, 2007 , Welcome to our group. We are so glad to have you here. You're right...we can learn from each other. It has been amazing for me. I thought I knew it all! I have been at this for some time. Like you, I have Autoimmune Diseases. I have Lupus, Sjogren's and RA. Also a blood disorder called Anti-phospholipid Syndrome. At biopsy they told me that the fibrosis was secondary to Lupus. A good guess, I suppose. Thanks for coming to us from across the pond. You really have some serious issues. Hope we can help you in some way....and hope you will help us too. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> > Hello , I am new here ,but have been lurking for a week or so ,In that > time I have already learned so much .> > My name is ,I am from Liverpool uk ,68 yrs. old & have been > dx'ed with many " Autoimmune " diseases over the past twenty yrs. > > Primary Biliary Cirrhosis ( PBC ), PF ,Fibromyalgia ,sjogren's > Syndrome , Peripheral Neuropathy ,costa chondritis & have recently had > surgery for cateracts on both eyes > > I worked with organic solvents for eighteen yrs. & I believe that > they were the cause of my illnesses .> > Thank you for being here > > best Wishes to all > uk> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2007 Report Share Posted September 17, 2007 Hi msinverness, First we would love to know your name! I am , 51 years old, also feel I have PF due to mold exposure. This is a wonderful group for support and information AND most of all -friends. You get to know about people through their posts and also through the phone chat held every other week. Leanne always posts the times and instructions and it is easy to join in. Most group members read all the posts and then just reply to the ones they feel they can help with or have advice, experience or knowledge to share. Sometime we just need to vent about the disease, doctors, family, etc. and this is a safe place. I'm sure others will be able to answer your question better. But in the meantime, welcome, and God bless you- PF/Sarcoid 3/2006msinverness wrote: Hi All, I am a 50 year old woman with COPD secondary to mold exposure about four years ago. I was 46 yrs old and placed on oxygen at that time and continue to be on O2 now. Many hospitalizations later, slips and slides, etc. I have been a member of this group for a little under 2 months. This is my first post. Could someone explain here in the group or email me and tell me what goes on here and how I maneuver around and get to know all of you? I would greatly appreciate it. I have so little support and so few friends because of this. Thanks in advance for any help you can give me. Sarcoid/PF 3/2006 Fussy? Opinionated? Impossible to please? Perfect. Join Yahoo!'s user panel and lay it on us. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2007 Report Share Posted September 17, 2007 Hi there, I think you have already started the ball rolling, by announcing to us that you are here!!! As sad as it is, I would like to say welcome to our group. Many of us suffer with PF of some kind, and it seems there are a few other lung issues and other complicating factors lurking about. I just started posting less than a month ago. I usually download all the mail into my outlook express and go from there. Bacially an introduction is all it takes, and I think you will find people are very responsive. At least that has been my experience thus far. I am 43 and have PF due to Hermansky Pudlak Syndrome, and I have a blog that you are free to visit at www.myspace.com/karenshpskorner I wil have to say that so far I am not as sick as most, but feel much compassion for everyone, and just hope to glean a lot of knowledge for when those really tough breathing times start to occur. The life expectancy for someone with HPS and PF is less than age 50, and I feel so blessed that 5 years ago they told me that is probably all I had left. again, welcome to the group, and my best advice is to find a subject and dive right in by asking whatever you feel you want or need to know. Take care Tillman PF/Hermansky Pudlak Syndrome 2002 NC _______________________________________________________________ Tillman, Regional Coordinator, Mid Atlantic-USAHermansky-Pudlak Syndrome Network IncMy NC phone:1 NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 New member Hi All,I am a 50 year old woman with COPD secondary to mold exposure about four years ago. I was 46 yrs old and placed on oxygen at that time and continue to be on O2 now. Many hospitalizations later, slips and slides, etc. I have been a member of this group for a little under 2 months. This is my first post. Could someone explain here in the group or email me and tell me what goes on here and how I maneuver around and get to know all of you? I would greatly appreciate it. I have so little support and so few friends because of this. Thanks in advance for any help you can give me. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.487 / Virus Database: 269.13.22/1013 - Release Date: 9/17/2007 1:29 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2007 Report Share Posted September 17, 2007 Hi there, I think you have already started the ball rolling, by announcing to us that you are here!!! As sad as it is, I would like to say welcome to our group. Many of us suffer with PF of some kind, and it seems there are a few other lung issues and other complicating factors lurking about. I just started posting less than a month ago. I usually download all the mail into my outlook express and go from there. Bacially an introduction is all it takes, and I think you will find people are very responsive. At least that has been my experience thus far. I am 43 and have PF due to Hermansky Pudlak Syndrome, and I have a blog that you are free to visit at www.myspace.com/karenshpskorner I wil have to say that so far I am not as sick as most, but feel much compassion for everyone, and just hope to glean a lot of knowledge for when those really tough breathing times start to occur. The life expectancy for someone with HPS and PF is less than age 50, and I feel so blessed that 5 years ago they told me that is probably all I had left. again, welcome to the group, and my best advice is to find a subject and dive right in by asking whatever you feel you want or need to know. Take care Tillman PF/Hermansky Pudlak Syndrome 2002 NC _______________________________________________________________ Tillman, Regional Coordinator, Mid Atlantic-USAHermansky-Pudlak Syndrome Network IncMy NC phone:1 NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 New member Hi All,I am a 50 year old woman with COPD secondary to mold exposure about four years ago. I was 46 yrs old and placed on oxygen at that time and continue to be on O2 now. Many hospitalizations later, slips and slides, etc. I have been a member of this group for a little under 2 months. This is my first post. Could someone explain here in the group or email me and tell me what goes on here and how I maneuver around and get to know all of you? I would greatly appreciate it. I have so little support and so few friends because of this. Thanks in advance for any help you can give me. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.487 / Virus Database: 269.13.22/1013 - Release Date: 9/17/2007 1:29 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2007 Report Share Posted September 17, 2007 Hey , I just went to your site, really nice. I was pleasantly surprised to hear my favorite song. I dream to that song. It looks like a fun vacation. Love and Prayers, Peggy ipf 6/04 Florida " Worry looks around, Sorry looks back, Faith looks up. " Hi there, I think you have already started the ball rolling, by announcing to us that you are here!!! As sad as it is, I would like to say welcome to our group. Many of us suffer with PF of some kind, and it seems there are a few other lung issues and other complicating factors lurking about. I just started posting less than a month ago. I usually download all the mail into my outlook express and go from there. Bacially an introduction is all it takes, and I think you will find people are very responsive. At least that has been my experience thus far. I am 43 and have PF due to Hermansky Pudlak Syndrome, and I have a blog that you are free to visit atwww.myspace.com/karenshpskorner I wil have to say that so far I am not as sick as most, but feel much compassion for everyone, and just hope to glean a lot of knowledge for when those really tough breathing times start to occur. The life expectancy for someone with HPS and PF is less than age 50, and I feel so blessed that 5 years ago they told me that is probably all I had left. again, welcome to the group, and my best advice is to find a subject and dive right in by asking whatever you feel you want or need to know. Take care Tillman PF/Hermansky Pudlak Syndrome 2002 NC _______________________________________________________________ Tillman, Regional Coordinator, Mid Atlantic-USA Hermansky-Pudlak Syndrome Network Inc My NC phone:1 NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem. Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 New member Hi All, I am a 50 year old woman with COPD secondary to mold exposure about four years ago. I was 46 yrs old and placed on oxygen at that time and continue to be on O2 now. Many hospitalizations later, slips and slides, etc. I have been a member of this group for a little under 2 months. This is my first post. Could someone explain here in the group or email me and tell me what goes on here and how I maneuver around and get to know all of you? I would greatly appreciate it. I have so little support and so few friends because of this. Thanks in advance for any help you can give me. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.487 / Virus Database: 269.13.22/1013 - Release Date: 9/17/2007 1:29 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 17, 2007 Report Share Posted September 17, 2007 Hey , I just went to your site, really nice. I was pleasantly surprised to hear my favorite song. I dream to that song. It looks like a fun vacation. Love and Prayers, Peggy ipf 6/04 Florida " Worry looks around, Sorry looks back, Faith looks up. " Hi there, I think you have already started the ball rolling, by announcing to us that you are here!!! As sad as it is, I would like to say welcome to our group. Many of us suffer with PF of some kind, and it seems there are a few other lung issues and other complicating factors lurking about. I just started posting less than a month ago. I usually download all the mail into my outlook express and go from there. Bacially an introduction is all it takes, and I think you will find people are very responsive. At least that has been my experience thus far. I am 43 and have PF due to Hermansky Pudlak Syndrome, and I have a blog that you are free to visit atwww.myspace.com/karenshpskorner I wil have to say that so far I am not as sick as most, but feel much compassion for everyone, and just hope to glean a lot of knowledge for when those really tough breathing times start to occur. The life expectancy for someone with HPS and PF is less than age 50, and I feel so blessed that 5 years ago they told me that is probably all I had left. again, welcome to the group, and my best advice is to find a subject and dive right in by asking whatever you feel you want or need to know. Take care Tillman PF/Hermansky Pudlak Syndrome 2002 NC _______________________________________________________________ Tillman, Regional Coordinator, Mid Atlantic-USA Hermansky-Pudlak Syndrome Network Inc My NC phone:1 NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem. Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 New member Hi All, I am a 50 year old woman with COPD secondary to mold exposure about four years ago. I was 46 yrs old and placed on oxygen at that time and continue to be on O2 now. Many hospitalizations later, slips and slides, etc. I have been a member of this group for a little under 2 months. This is my first post. Could someone explain here in the group or email me and tell me what goes on here and how I maneuver around and get to know all of you? I would greatly appreciate it. I have so little support and so few friends because of this. Thanks in advance for any help you can give me. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.487 / Virus Database: 269.13.22/1013 - Release Date: 9/17/2007 1:29 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 hallo welcome to the group. sorry about your condition. i am 48 and from glasgow in scotland. can't help be intrigued by inverness in your address and look forward to an explanation. is it your name or where you live. may uip/ipf 06.06 glasgow, scotland > > Hi All, > I am a 50 year old woman with COPD secondary to mold exposure > about four years ago. I was 46 yrs old and placed on oxygen at that > time and continue to be on O2 now. Many hospitalizations later, slips > and slides, etc. I have been a member of this group for a little under > 2 months. This is my first post. Could someone explain here in the > group or email me and tell me what goes on here and how I maneuver > around and get to know all of you? I would greatly appreciate it. I > have so little support and so few friends because of this. Thanks in > advance for any help you can give me. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 hallo welcome to the group. sorry about your condition. i am 48 and from glasgow in scotland. can't help be intrigued by inverness in your address and look forward to an explanation. is it your name or where you live. may uip/ipf 06.06 glasgow, scotland > > Hi All, > I am a 50 year old woman with COPD secondary to mold exposure > about four years ago. I was 46 yrs old and placed on oxygen at that > time and continue to be on O2 now. Many hospitalizations later, slips > and slides, etc. I have been a member of this group for a little under > 2 months. This is my first post. Could someone explain here in the > group or email me and tell me what goes on here and how I maneuver > around and get to know all of you? I would greatly appreciate it. I > have so little support and so few friends because of this. Thanks in > advance for any help you can give me. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 18, 2007 Report Share Posted September 18, 2007 Hi, Welcome to the group! I'm 34 diagnosed with PF in March/07 and Raynaud's Disease in Sept/07. Somedays are fine and other days I just want to crawl under the bed. You'll find a lot of helpful information and caring people. Irene Canada ---- Original Message ---- To: Breathe-Support Sent: Mon, 17 Sep 2007 8:50 pm Subject: New member Hi All, I am a 50 year old woman with COPD secondary to mold exposure about four years ago. I was 46 yrs old and placed on oxygen at that time and continue to be on O2 now. Many hospitalizations later, slips and slides, etc. I have been a member of this group for a little under 2 months. This is my first post. Could someone explain here in the group or email me and tell me what goes on here and how I maneuver around and get to know all of you? I would greatly appreciate it. I have so little support and so few friends because of this. Thanks in advance for any help you can give me. 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 September 18, 2007 Report Share Posted September 18, 2007 Hi, Welcome to the group! I'm 34 diagnosed with PF in March/07 and Raynaud's Disease in Sept/07. Somedays are fine and other days I just want to crawl under the bed. You'll find a lot of helpful information and caring people. Irene Canada ---- Original Message ---- To: Breathe-Support Sent: Mon, 17 Sep 2007 8:50 pm Subject: New member Hi All, I am a 50 year old woman with COPD secondary to mold exposure about four years ago. I was 46 yrs old and placed on oxygen at that time and continue to be on O2 now. Many hospitalizations later, slips and slides, etc. I have been a member of this group for a little under 2 months. This is my first post. Could someone explain here in the group or email me and tell me what goes on here and how I maneuver around and get to know all of you? I would greatly appreciate it. I have so little support and so few friends because of this. Thanks in advance for any help you can give me. 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 September 18, 2007 Report Share Posted September 18, 2007 Hi, Welcome to the group! I'm 34 diagnosed with PF in March/07 and Raynaud's Disease in Sept/07. Somedays are fine and other days I just want to crawl under the bed. You'll find a lot of helpful information and caring people. Irene Canada ---- Original Message ---- To: Breathe-Support Sent: Mon, 17 Sep 2007 8:50 pm Subject: New member Hi All, I am a 50 year old woman with COPD secondary to mold exposure about four years ago. I was 46 yrs old and placed on oxygen at that time and continue to be on O2 now. Many hospitalizations later, slips and slides, etc. I have been a member of this group for a little under 2 months. This is my first post. Could someone explain here in the group or email me and tell me what goes on here and how I maneuver around and get to know all of you? I would greatly appreciate it. I have so little support and so few friends because of this. Thanks in advance for any help you can give me. 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...
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