Guest guest Posted April 21, 2001 Report Share Posted April 21, 2001 Thanks and you're welcome Pam! I like to joke around, but the truth of the matter is...I'll be scared and meek as can be, when I meet the good Doc in June! --- pamjams2@... wrote: > Hi , > > I just wanted to say that I LOVED your " practice " > psyche evaluation, > conversation, or whatever that was!! HA! HA! HA!! > Thanks for giving me a > great big laugh to start off my day!! > > > > > Pam > Pre-op in MD > ===== Age 41 BMI 61 Consult 6/7/01 Dr. Herron __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2003 Report Share Posted May 1, 2003 Hi , My name is Pat, and I am G-ma to , 16 months, RSS. I totally agree that although RSS children have a harder time fighting infections. is certainly proof of that. Since Sept of 02 has been hospitalized 3 times. Once with Aspiration pneumonitis, once with suspected rotavirus, and once with RSV. Rotavirus (an intestinal virus) usually presents itself in young children with bouts of diarrhea, some possible vomiting, but almost killed . His liver and kidneys shut down, his stomach started bleeding, his BSLs dropped drastically low (22), and he had to be put on a ventilator. RSV can hit any young child hard, but it hospitalized for 5 weeks, 3.5 weeks of that on a ventilator, with the prospects of a trach looming in the future. He now has such bad scarring that he considered to have asthma and reactive airway disease. Hopefully, he will out grow these problems, but having RSS and poor muscle tone, did not help his situation. One factor that was brought to our attention is that, because these kids don't eat well, they have a tendency to have low functioning immune systems, and have more trouble fighting off infections than most other kids. Know that you are not alone when it comes to this kind of problem. Pat (g-ma to , RSS, 16 months, 13#, 26 " , GT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2003 Report Share Posted December 10, 2003 thank you for your thoughts , yes it has been a hard year for me hopefully next year will be better .... your friend shannon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2004 Report Share Posted April 13, 2004 Hi, My name is and we are still working on my daughters many disorders. But when I read about your problem with your child throwing up food not digested, it reminded me of my Kierra years ago. Kierra has gastroparisis. She did the same thing, full really fast after not eating much, gerd, stomach bloating, constipation, stomach pain. She also has motility problems. I have been going through this for almost 2 years. If I can help just let me know. Mother of Kierra, 9 in Aug. 47 lbs, off gtube, gerd, gastroparisis,dysmotility disorder, vit k deficient,carnitine deficentcy syndrom,chronic constipation, areaflexia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 OHhhhh that is so exciting, ! I love it ! I know what you mean about something special, when i hit the hundred pound mark which would be 183, I decided that i am going to treat myself to getting my teeth whitened...............................Let us know what you do about it on Tuesday ! I am so thrilled for you ! Colleenmusil321 wrote: I have been toying with the idea but want to be at my lowest before I do anything, if I ever do. You think a picture of Dr. Baggs, on my hip bone, is out of line? > > > >hello gang,> > > >> > > >Today i got on the scale and hit the 100 mark.> > > >> > > >I just had to share this with you all.> > > >> > > >I weigh exactly 176 and not the 276 I weighed in day of my> > > >orientation. That makes 34 prior to surgery and 66 since.> > > >> > > >thanks for letting me share.> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 I am also getting my teeth whitened. How funny you would say that, however, I am waiting for a settlement for a car accident. it is my present for all the hell I am going through over that stupid car accident 2 1/2 years ago. Grrrrrrrrrrrrrrrrr. Should be in the next few months, though. thanks Colleen. gina > > > > >hello gang, > > > > > > > > > >Today i got on the scale and hit the 100 mark. > > > > > > > > > >I just had to share this with you all. > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed in day of my > > > > >orientation. That makes 34 prior to surgery and 66 since. > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 I am also getting my teeth whitened. How funny you would say that, however, I am waiting for a settlement for a car accident. it is my present for all the hell I am going through over that stupid car accident 2 1/2 years ago. Grrrrrrrrrrrrrrrrr. Should be in the next few months, though. thanks Colleen. gina > > > > >hello gang, > > > > > > > > > >Today i got on the scale and hit the 100 mark. > > > > > > > > > >I just had to share this with you all. > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed in day of my > > > > >orientation. That makes 34 prior to surgery and 66 since. > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 I am also getting my teeth whitened. How funny you would say that, however, I am waiting for a settlement for a car accident. it is my present for all the hell I am going through over that stupid car accident 2 1/2 years ago. Grrrrrrrrrrrrrrrrr. Should be in the next few months, though. thanks Colleen. gina > > > > >hello gang, > > > > > > > > > >Today i got on the scale and hit the 100 mark. > > > > > > > > > >I just had to share this with you all. > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed in day of my > > > > >orientation. That makes 34 prior to surgery and 66 since. > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 See, this is my problem with the reward system...I already did get my teeth whitened, just because. (although you probably couldn't tell when I was at the hospital, as I hadn't brushed my teeth since that a.m., and I no doubt had a thick pasty crust all over my mouth given the dehydration from the airtube!) I've started laser hair removal (am doing the mustache, chin thing...how I love Polycystic Ovarian Syndrome). My reward is going to be the bikini and arm pits. Just trying to decide on a permanent landing strip, tortilla chip or martini glass, or the Brazillian for the shape. Hee Hee. That will be my reward, as it is pretty pricey!!!) Robynnmusil321 wrote: I am also getting my teeth whitened. How funny you would say that, however, I am waiting for a settlement for a car accident. it is my present for all the hell I am going through over that stupid car accident 2 1/2 years ago. Grrrrrrrrrrrrrrrrr. Should be in the next few months, though. thanks Colleen. gina> > > > >hello gang,> > > > >> > > > >Today i got on the scale and hit the 100 mark.> > > > >> > > > >I just had to share this with you all.> > > > >> > > > >I weigh exactly 176 and not the 276 I weighed in day of my> > > > >orientation. That makes 34 prior to surgery and 66 since.> > > > >> > > > >thanks for letting me share.> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >> > > > >Yahoo! Groups Links> > > > >> > > > >> > > > >> > > > >> > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 I too have polycystic ovarian syndrome and have quite a bit of facial hair on my neck (beard area). Can you do laser removal there too? I'm tired of shaving my beard everyday!!! LOL! Tina > > > > > >hello gang, > > > > > > > > > > > >Today i got on the scale and hit the 100 mark. > > > > > > > > > > > >I just had to share this with you all. > > > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed in day of my > > > > > >orientation. That makes 34 prior to surgery and 66 since. > > > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Yep. I had that done too...and it's as clean as a baby's butt. I had electrolysis for years, and it didn't work. But laser is a God send!! RobynnTina wrote: I too have polycystic ovarian syndrome and have quite a bit of facial hair on my neck (beard area). Can you do laser removal there too? I'm tired of shaving my beard everyday!!! LOL!Tina> > > > > >hello gang,> > > > > >> > > > > >Today i got on the scale and hit the 100 mark.> > > > > >> > > > > >I just had to share this with you all.> > > > > >> > > > > >I weigh exactly 176 and not the 276 I weighed in day of my> > > > > >orientation. That makes 34 prior to surgery and 66 since.> > > > > >> > > > > >thanks for letting me share.> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > >> > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Good morning Pam. I found myself missing you on the weekend. I guess that is what the phone is for. Thank you so much for the kudos. You aren't far behind me so you know what is coming your way. > > > > > >hello gang, > > > > > > > > > > > >Today i got on the scale and hit the 100 > > mark. > > > > > > > > > > > >I just had to share this with you all. > > > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed > > in day of my > > > > > >orientation. That makes 34 prior to surgery > > and 66 since. > > > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Good morning Pam. I found myself missing you on the weekend. I guess that is what the phone is for. Thank you so much for the kudos. You aren't far behind me so you know what is coming your way. > > > > > >hello gang, > > > > > > > > > > > >Today i got on the scale and hit the 100 > > mark. > > > > > > > > > > > >I just had to share this with you all. > > > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed > > in day of my > > > > > >orientation. That makes 34 prior to surgery > > and 66 since. > > > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 I want to do it for my facial hair. Where would I get it? LaWanda At 12:44 PM 6/13/05, you wrote: >Robynn >i want to do the lazer thing too ! my chin is bad, and then i want to do >my calfs and then my thighs and then the pits....................... >Colleen > >Robynn VanPatten robynnsf@...> wrote: >See, this is my problem with the reward system...I already did get my >teeth whitened, just because. (although you probably couldn't tell when I >was at the hospital, as I hadn't brushed my teeth since that a.m., and I >no doubt had a thick pasty crust all over my mouth given the dehydration >from the airtube!) > >I've started laser hair removal (am doing the mustache, chin thing...how I >love Polycystic Ovarian Syndrome). My reward is going to be the bikini >and arm pits. Just trying to decide on a permanent landing strip, >tortilla chip or martini glass, or the Brazillian for the shape. Hee >Hee. That will be my reward, as it is pretty pricey!!!) > >Robynn > >musil321 scorchio321@...> wrote: >I am also getting my teeth whitened. How funny you would say that, >however, I am waiting for a settlement for a car accident. it is my >present for all the hell I am going through over that stupid car >accident 2 1/2 years ago. Grrrrrrrrrrrrrrrrr. > >Should be in the next few months, though. > >thanks Colleen. > >gina > > > > > > > >hello gang, > > > > > > > > > > > >Today i got on the scale and hit the 100 mark. > > > > > > > > > > > >I just had to share this with you all. > > > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed in day of my > > > > > >orientation. That makes 34 prior to surgery and 66 since. > > > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Thanks Robin. That's what I'm looking for! LaWanda At 05:48 PM 6/13/05, you wrote: >Kaiser does it, fee for service, in the dermatology or cosmetics >department. I get it done at a chi chi salon in SF on fillmore street >called " aneu " . It's a bit expensive there...probably would be cheaper >elsewhere. > >For those of you with African American skin or dark Hispanic skin...go >through Kaiser. They have a special laser that works on dark skin to help >avoid hyperpigmentation. Also, the laser has to be able to discern the >difference between the dark hair and the light skin in order to work, >unless they have a special one...and Kaiser does. I think in Hayward and >somewhere else.... > >Robynn > >LaWanda Ezell konfuzed@...> wrote: >I want to do it for my facial hair. Where would I get it? LaWanda At >12:44 PM 6/13/05, you wrote: > >Robynn > >i want to do the lazer thing too ! my chin is bad, and then i want to do > >my calfs and then my thighs and then the pits....................... > >Colleen > > > >Robynn VanPatten robynnsf@...> wrote: > >See, this is my problem with the reward system...I already did get my > >teeth whitened, just because. (although you probably couldn't tell when I > >was at the hospital, as I hadn't brushed my teeth since that a.m., and I > >no doubt had a thick pasty crust all over my mouth given the dehydration > >from the airtube!) > > > >I've started laser hair removal (am doing the mustache, chin thing...how I > >love Polycystic Ovarian Syndrome). My reward is going to be the bikini > >and arm pits. Just trying to decide on a permanent landing strip, > >tortilla chip or martini glass, or the Brazillian for the shape. Hee > >Hee. That will be my reward, as it is pretty pricey!!!) > > > >Robynn > > > >musil321 scorchio321@...> wrote: > >I am also getting my teeth whitened. How funny you would say that, > >however, I am waiting for a settlement for a car accident. it is my > >present for all the hell I am going through over that stupid car > >accident 2 1/2 years ago. Grrrrrrrrrrrrrrrrr. > > > >Should be in the next few months, though. > > > >thanks Colleen. > > > >gina > > > > > > > > > > >hello gang, > > > > > > > > > > > > > >Today i got on the scale and hit the 100 mark. > > > > > > > > > > > > > >I just had to share this with you all. > > > > > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed in day of my > > > > > > >orientation. That makes 34 prior to surgery and 66 since. > > > > > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Wow wish I'd been on one of them! You're right about the driving, I know when trucks are coming! Best of luck with your suit, I know what a pain they can be. LaWanda luckily without residuals, but was in a coma for a couple of days. At 01:40 PM 6/14/05, you wrote: >I am so trying to not get fed up and take whatever. I will have >problems with my right arm for the rest of my life and I deserve a >nice tooth whitening for that (that tongue is back into that cheek). >I have recently been through a deposition that was my own personal >living hell and this was a nice lawyer and right now they are working >out a deposition with my Orthopedist. So sit and wait. > >And you should have been driving. You probably could have dodged the >truck better. > >Do you know that when Muni busses get in accidents the claims person >goes out to the accident site with a check book and they write checks >right then and their to those that arne't too hurt. Buying good >press I guess. > > > > > > > > > >hello gang, > > > > > > > > > > > > > > > >Today i got on the scale and hit the 100 mark. > > > > > > > > > > > > > > > >I just had to share this with you all. > > > > > > > > > > > > > > > >I weigh exactly 176 and not the 276 I weighed in day of >my > > > > > > > >orientation. That makes 34 prior to surgery and 66 since. > > > > > > > > > > > > > > > >thanks for letting me share. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2006 Report Share Posted January 31, 2006 Blue, blue, my world is blue . . . . . . anyone remember that song? Anyway, I had a couple of comments on Terri's answer, and they are in blue! Ramblin' Rose Moderator Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: to Date: Tue, 31 Jan 2006 12:19:22 -0000 Bonnie, You have probably heard horror stories about the spinal tap, but they are not all true. I have had three and the worst I have had is a very bad headache. Be sure to lay flat...don't do anything after they send you home but rest. Bonnie, even if your doctor or nurse tells you that you don't have to stay down (any many of them do say that), stay flat for 12 hours if you can. Drink caffeine & lots of water. If you have to get up & you start getting a headache, don't wait--lie back down. I tell you this from personal & professional experience. As far as the evoked potentials they are just very boring. I have been told for a time that I had MS then I went to s Hopkins and possilby it is NS but no one really knows for sure. I am headed to Duke next week to see a Doctor Skeen who treats people like me that no one can make a decision on. I read an article that said this guy just flips a coin. At least it's cheap & painless! Good luck with your tests. Amen! Rose Terri G. Find e-mail, documents and more on your PC instantly with Windows Desktop Search–FREE! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Rose I think I remember it....Blue is my world now that I'm without you? LOL now I'll spend 2 hours googling trying to find it. I have a question for my sarc sisters from the nursing field. It'll be easier to ask here than try to remember in a month. I got a little slip that has my weight, height, blood pressure & stuff on it but I'm not sure what some of the abbreviations stand for. I'm assuming PLT is platelette & WBC is white blood cell but what is HGB & HCT? grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 Rose, Where did you read the article? I would like to read it. I am sick and tired of being shuffled from doctor to doctor. I am spending so much money on all of this crap that I could scream! I just don't even know what to do anymore. As far as the LP, so many people think it is such a painful procedure and I just have not had that experience. The headache is horrific if you get it though. If you have ever watched the episode of House where they do the LP it is show as an excrutiating procedure; that has just not been my experience. Thanks for the info. Terri G. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2006 Report Share Posted February 3, 2006 Thanks T! My hct was 39.7 so I'm normal there. My dr says my numbers are good but she never explains what they should be or anything. grannylunatic@... __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Hi ! I am a pastor and shared your email at the end of my message yesterday - I spoke on how to handle stress and your email was powerful! THANK YOU! Ken R From: tony <oilfieldcop@ yahoo.com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Tuesday, February 24, 2009, 2:15 PM No one knows how long you got I been fighting it for going on 15 years so don't let the horror stories get to you to bad. I have both IPF and COPD and all that means is its hard to breath like we don't all ready know it huh. Hey just relax your nerves settle down and take it a step at a time and enjoy yourself as much as you can.Don't think about the regrets get out and o the things you want to do.Even if you think you can't do them try anyhow-ggod lucktony>> Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Hi ! I am a pastor and shared your email at the end of my message yesterday - I spoke on how to handle stress and your email was powerful! THANK YOU! Ken R From: tony <oilfieldcop@ yahoo.com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Tuesday, February 24, 2009, 2:15 PM No one knows how long you got I been fighting it for going on 15 years so don't let the horror stories get to you to bad. I have both IPF and COPD and all that means is its hard to breath like we don't all ready know it huh. Hey just relax your nerves settle down and take it a step at a time and enjoy yourself as much as you can.Don't think about the regrets get out and o the things you want to do.Even if you think you can't do them try anyhow-ggod lucktony>> Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 Our little is one powerful little package for sure.. nice to know your a pastor. Love & Prayers, PeggyFlorida,  IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Hi ! I am a pastor and shared your email at the end of my message yesterday - I spoke on how to handle stress and your email was powerful! THANK YOU! Ken R--- On Thu, 2/26/09, denise randel <dnsrndl (AT) yahoo (DOT) com> wrote:From: denise randel <dnsrndl (AT) yahoo (DOT) com>Subject: Re: Re: KenTo: Breathe-Support Date: Thursday, February 26, 2009, 2:04 AMI am honred that you want to share it. You definately have my permission to share it with whomever you choose:) R. (52) Sarcoid/PF 3/2006  Carlsbad, California--- On Wed, 2/25/09, Ken Raphael <kjraphael (AT) yahoo (DOT) com> wrote:From: Ken Raphael <kjraphael (AT) yahoo (DOT) com>Subject: Re: Re: To: Breathe-Support@ yahoogroups. comDate: Wednesday, February 25, 2009, 3:36 PMHi ! I laughed out loud! You made my day - I am going to print yours and share it, if that's okay? - You are a very special lady! I see why you are beating the odds! Ken--- On Wed, 2/25/09, denise randel <dnsrndl (AT) yahoo (DOT) com> wrote:From: denise randel <dnsrndl (AT) yahoo (DOT) com>Subject: Re: Re: KenTo: Breathe-Support@ yahoogroups. comDate: Wednesday, February 25, 2009, 11:09 PMHi Ken,  What a great attitude you have and I believe you are right, attitude makes a big difference in our health. I also laughed when I first heard my diagnosis, partly beacuse it all seemed so unreal, partly beacuse I had a Chinese doctor who did not speak English well and informed me :"Oh you so unluckee ladee! See these white spot on lung? See them all over here, here, and here?  These no good, these bad and mean you no live long!" Fortunately I have now lived two years past his original prognosis of one year AND!!!! I am still going strong ( plus I have a new doctor-lol). This disease is not fun by any means, but I have had some of the best moments in my life since I was diagnosed in March 06. I no longer have a lot of the material things I had before, big house, big yard, vacations to Europe, ect., BUT I have the beautiful world God created for us and plenty of family and friends to share it with. God bless you Ken, and may your numbered days be many.   R. (52) Sarcoid/PF 3/2006  Carlsbad, California--- On Wed, 2/25/09, Ken Raphael <kjraphael (AT) yahoo (DOT) com> wrote:From: Ken Raphael <kjraphael (AT) yahoo (DOT) com>Subject: Re: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Wednesday, February 25, 2009, 1:35 PMHi Ginny! I appreciated your questions. I am like you - New to this. I was recently diagnosed with IPF and didn't have the slightest idea what it was.... For several months I didn't even check it out on the Internet. I thought, okay, I have some scarring on the lungs - No big deal. Then I got a notice from the VA referring me to a pulmonary clinic and in that notice there was a word I didn't understand so I looked it up on the Internet and wow, I saw I have 3-6 years to live. I was so shocked that I started to laugh but no one else was laughing - It seemed totally unreal, and to some degree still does. My IPF was found during an Agent Orange exam on an x-ray. I didn't go in because of symptoms. Now, however, I look back and I had symptoms. I thought I was out of shape or that my heart was having trouble causing me to be short of breath. I especially feel it at night in bed. Like you, I don't know anything about an oximeter but I am ready for one. My doctor said I couldn't fly right now until further testing - We already had our tickets. I am grateful he stepped in when I hear what altitude can do without proper precautions. I would like to read the value of an oximeter on this board as well. As far as our life expectancy I'm okay on that. In says in Psalm 139 says, "In Thy book they were all written, the days that were ordained for me when as yet there was not one of them." If I have 3 or 30 years left I'm okay. I hope you have understanding family and friends. I live each day as normally as possible with joy and optimism - I think that is the best medicine! That certainly doesn't mean I'm in denial about this disease - It's serious. Relationships are more important to me now - I value everyone - I'm sure you do too! Keep reading this board. I'm new to it too and mostly just read. Everyone here is more than understanding and accepting - You'll learn a lot. A friend,Ken Raphael--- On Wed, 2/25/09, Joyce T Rosenberg <pinkrockybeach@ yahoo.com> wrote:From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>Subject: Re: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Wednesday, February 25, 2009, 3:26 PMTonyI love to read about the fight going on for 15 years, not about the fight, but that it's 15 years it gives me hope i hope i make sensePink Joyce IPF 3/06  Pennsylvania Donate Life Listed 1/09www.transplantfund. org--- On Tue, 2/24/09, tony <oilfieldcop@ yahoo.com> wrote:From: tony <oilfieldcop@ yahoo.com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Tuesday, February 24, 2009, 2:15 PMNo one knows how long you got I been fighting it for going on 15 years so don't let the horror stories get to you to bad. I have both IPF and COPD and all that means is its hard to breath like we don't all ready know it huh. Hey just relax your nerves settle down and take it a step at a time and enjoy yourself as much as you can.Don't think about the regrets get out and o the things you want to do.Even if you think you can't do them try anyhow-ggod lucktony>> Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the  PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 I agree! I see you are from Florida, I'm on the other end in Lodi, California, near Sacramento. Have a good day, Peggy! Ken R. From: tony <oilfieldcop@ yahoo.com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Tuesday, February 24, 2009, 2:15 PM No one knows how long you got I been fighting it for going on 15 years so don't let the horror stories get to you to bad. I have both IPF and COPD and all that means is its hard to breath like we don't all ready know it huh. Hey just relax your nerves settle down and take it a step at a time and enjoy yourself as much as you can.Don't think about the regrets get out and o the things you want to do.Even if you think you can't do them try anyhow-ggod lucktony>> Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2009 Report Share Posted March 2, 2009 I agree! I see you are from Florida, I'm on the other end in Lodi, California, near Sacramento. Have a good day, Peggy! Ken R. From: tony <oilfieldcop@ yahoo.com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Tuesday, February 24, 2009, 2:15 PM No one knows how long you got I been fighting it for going on 15 years so don't let the horror stories get to you to bad. I have both IPF and COPD and all that means is its hard to breath like we don't all ready know it huh. Hey just relax your nerves settle down and take it a step at a time and enjoy yourself as much as you can.Don't think about the regrets get out and o the things you want to do.Even if you think you can't do them try anyhow-ggod lucktony>> Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny> Quote Link to comment Share on other sites More sharing options...
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