Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Judy...thanks for the info. Boy that's tough to have no insurance. Disability should not be hard to get. One tip: if you take an early S/S then you CANNOT later change to disability. You get ONE or the OTHER. I was already on S/S when I was dx and now can't get disability which may be better for us. If you need a support group you have been led to the best there is. We have to be doing something right because everyone on this board is glad to be here. Some slip away...that happens. But if you make yourself available and join in, you'll love us. Have you had a second opinion Judy? Are you still on O2? In some areas 65 is the cut off age for transplant and also weight is a huge factor. If you happen to be over weight (like I and many others here) that will be a factor in transplant. I'm really sorry about Joe not being available emotionally. We've just been talking about leveling with our spouses and asking for what we want/need. Go back to the web site and read some past but recent posts...good info. You aren't alone in feeling alone. BTW...here you are a newbie and I like adding age to our 'signature'...I'm gonna go add mine too. I never remember ages of members! See, you have contributed already. God bless Mama-Sher, ipf 3-06, OR.Don't fret about tomorrow, God is already there! more about me Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't an emotional type person so he isn't someone I can talk to about most things.I have 5 grown, married kids who all live up north. Three of them came at Christmas with their families and I was completely overwhelmed. It made me realize how much I have slipped in a fairly short time.I was diagnosed this past April 07 but was previously mis-diagnosed for more than a year. The family Dr. kept insisting I had a bad case of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 weeks of antibiotics with no change in me or my xray, he finally agreed to send me to a Pulmonologist. That changed my life for the good and bad. He did many tests, ruled out Asthma and sent me for a CT Scan. Also, he put me on oxygen 24/7 as my breathing was very labored. When he diagnosed me with IPF he said I was at the serious end of the disease. I do feel myself slipping and that scares me. We have no medical insurance and I can't get any. I was also denied Soc. Sec. Dis. and have a lawyer to fight it. I really need medical and a chance to get on the Transplant list. It doesn't look likely for me and that makes me feel depressed if I think about it too much. Still, I try very hard to keep a positive attitude and not dwell on the things I can't do anymore. Instead, I think about all the things I can still do and feel blessed. I need a support group. And hopefully, I can be support to others as well. I will always be available to talk whenever anyone needs a friend. I am one who likes to give back. So, again, thank you all for being here!judybrown63 04-07 IPF SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Judy, I am also 63. I was misdiagnosed for at least 3 years, even after a CT and Bronchoscopy. It is amazing how many people, even in the medical field, do not even know what Pulmonary Fibrosis is! I had to get a lawyer to get Disability, too. Incredible. Thanks for sharing with us. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > an emotional type person so he isn't someone I can talk to about most > things.> I have 5 grown, married kids who all live up north. Three of them > came at Christmas with their families and I was completely > overwhelmed. It made me realize how much I have slipped in a fairly > short time.> I was diagnosed this past April 07 but was previously mis-diagnosed > for more than a year. The family Dr. kept insisting I had a bad case > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 weeks > of antibiotics with no change in me or my xray, he finally agreed to > send me to a Pulmonologist. That changed my life for the good and > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > Also, he put me on oxygen 24/7 as my breathing was very labored. When > he diagnosed me with IPF he said I was at the serious end of the > disease. I do feel myself slipping and that scares me. > We have no medical insurance and I can't get any. I was also denied > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > and a chance to get on the Transplant list. It doesn't look likely > for me and that makes me feel depressed if I think about it too much. > Still, I try very hard to keep a positive attitude and not dwell on > the things I can't do anymore. Instead, I think about all the things > I can still do and feel blessed. I need a support group. And > hopefully, I can be support to others as well. I will always be > available to talk whenever anyone needs a friend. I am one who likes > to give back. So, again, thank you all for being here!> judybrown63 > 04-07 IPF SC> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Sher thanks for your kind reply. i'm thinking about what you wrote about ssd. I took an early soc. sec. when i turned 62. so are you saying even though i have a lawyer, i won't be granted ssd? I haven't had a second opinion but feel certain it's what i have. the ct scan confirmed it, my xrays have the scarring and my fingers have recently clubbed. they look like ET's Fingertips! I've been on oxygen since diagnosis in april 07. in the beginning, i didn't need it all the time..now i can't walk a few feet without severe breathlessness with or without it. I feel discouraged because i really wanted the option of a transplant. no medical kind of seals my fate. In addition, i am overweight thanks to prednisone. I am going to try going off of it after i see my dr. in a few weeks as it doesn't seem to be helping me any way. I am wondering if anyone else has a problem with bathing? I use a stool in the shower, have my ox. close by, but it is the hardest thing i do..there are times i choose being smelly rather than putting myself through it! ewww! and last week i actually fell off the stool and fell with my legs all twisted..i finally had to laugh so i didn't cry..it was like a cicus act trying to get out of the tub! i ended up with a huge bruise on my butt. take care and god bless, judybrown63 ipf 4/07 sc > > Judy...thanks for the info. > Boy that's tough to have no insurance. Disability should not be hard to get. One tip: if you take an early S/S then you CANNOT later change to disability. You get ONE or the OTHER. I was already on S/S when I was dx and now can't get disability which may be better for us. > If you need a support group you have been led to the best there is. We have to be doing something right because everyone on this board is glad to be here. Some slip away...that happens. But if you make yourself available and join in, you'll love us. > Have you had a second opinion Judy? Are you still on O2? > In some areas 65 is the cut off age for transplant and also weight is a huge factor. If you happen to be over weight (like I and many others here) that will be a factor in transplant. > I'm really sorry about Joe not being available emotionally. We've just been talking about leveling with our spouses and asking for what we want/need. Go back to the web site and read some past but recent posts...good info. > You aren't alone in feeling alone. > BTW...here you are a newbie and I like adding age to our 'signature'...I'm gonna go add mine too. I never remember ages of members! See, you have contributed already. > God bless > > Mama-Sher, ipf 3-06, OR. > Don't fret about tomorrow, God is already there! > more about me > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > an emotional type person so he isn't someone I can talk to about most > things. > I have 5 grown, married kids who all live up north. Three of them > came at Christmas with their families and I was completely > overwhelmed. It made me realize how much I have slipped in a fairly > short time. > I was diagnosed this past April 07 but was previously mis- diagnosed > for more than a year. The family Dr. kept insisting I had a bad case > of asthma plus pneumonia and I needed to " ACCEPT IT. " After 5 weeks > of antibiotics with no change in me or my xray, he finally agreed to > send me to a Pulmonologist. That changed my life for the good and > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > Also, he put me on oxygen 24/7 as my breathing was very labored. When > he diagnosed me with IPF he said I was at the serious end of the > disease. I do feel myself slipping and that scares me. > We have no medical insurance and I can't get any. I was also denied > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > and a chance to get on the Transplant list. It doesn't look likely > for me and that makes me feel depressed if I think about it too much. > Still, I try very hard to keep a positive attitude and not dwell on > the things I can't do anymore. Instead, I think about all the things > I can still do and feel blessed. I need a support group. And > hopefully, I can be support to others as well. I will always be > available to talk whenever anyone needs a friend. I am one who likes > to give back. So, again, thank you all for being here! > judybrown63 > 04-07 IPF SC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Judy, Take the O2 into the shower!!!!! Use slightly less hot water to make less steam and keep the door to the bathroom open. Also, have your towel ready as you get out to get warm. A terry bathrobe really helps so that you can get covered quickly. You just have to really be careful and do things slowly. Please take care of yourself. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley judybrown63 wrote: Sher thanks for your kind reply. i'm thinking about what you wrote about ssd. I took an early soc. sec. when i turned 62. so are you saying even though i have a lawyer, i won't be granted ssd? I haven't had a second opinion but feel certain it's what i have. the ct scan confirmed it, my xrays have the scarring and my fingers have recently clubbed. they look like ET's Fingertips! I've been on oxygen since diagnosis in april 07. in the beginning, i didn't need it all the time..now i can't walk a few feet without severe breathlessness with or without it. I feel discouraged because i really wanted the option of a transplant. no medical kind of seals my fate. In addition, i am overweight thanks to prednisone. I am going to try going off of it after i see my dr. in a few weeks as it doesn't seem to be helping me any way. I am wondering if anyone else has a problem with bathing? I use a stool in the shower, have my ox. close by, but it is the hardest thing i do..there are times i choose being smelly rather than putting myself through it! ewww! and last week i actually fell off the stool and fell with my legs all twisted..i finally had to laugh so i didn't cry..it was like a cicus act trying to get out of the tub! i ended up with a huge bruise on my butt. take care and god bless, judybrown63 ipf 4/07 sc > > Judy...thanks for the info. > Boy that's tough to have no insurance. Disability should not be hard to get. One tip: if you take an early S/S then you CANNOT later change to disability. You get ONE or the OTHER. I was already on S/S when I was dx and now can't get disability which may be better for us. > If you need a support group you have been led to the best there is. We have to be doing something right because everyone on this board is glad to be here. Some slip away...that happens. But if you make yourself available and join in, you'll love us. > Have you had a second opinion Judy? Are you still on O2? > In some areas 65 is the cut off age for transplant and also weight is a huge factor. If you happen to be over weight (like I and many others here) that will be a factor in transplant. > I'm really sorry about Joe not being available emotionally. We've just been talking about leveling with our spouses and asking for what we want/need. Go back to the web site and read some past but recent posts...good info. > You aren't alone in feeling alone. > BTW...here you are a newbie and I like adding age to our 'signature'...I'm gonna go add mine too. I never remember ages of members! See, you have contributed already. > God bless > > Mama-Sher, ipf 3-06, OR. > Don't fret about tomorrow, God is already there! > more about me > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > an emotional type person so he isn't someone I can talk to about most > things. > I have 5 grown, married kids who all live up north. Three of them > came at Christmas with their families and I was completely > overwhelmed. It made me realize how much I have slipped in a fairly > short time. > I was diagnosed this past April 07 but was previously mis- diagnosed > for more than a year. The family Dr. kept insisting I had a bad case > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 weeks > of antibiotics with no change in me or my xray, he finally agreed to > send me to a Pulmonologist. That changed my life for the good and > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > Also, he put me on oxygen 24/7 as my breathing was very labored. When > he diagnosed me with IPF he said I was at the serious end of the > disease. I do feel myself slipping and that scares me. > We have no medical insurance and I can't get any. I was also denied > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > and a chance to get on the Transplant list. It doesn't look likely > for me and that makes me feel depressed if I think about it too much. > Still, I try very hard to keep a positive attitude and not dwell on > the things I can't do anymore. Instead, I think about all the things > I can still do and feel blessed. I need a support group. And > hopefully, I can be support to others as well. I will always be > available to talk whenever anyone needs a friend. I am one who likes > to give back. So, again, thank you all for being here! > judybrown63 > 04-07 IPF SC > No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1209 - Release Date: 1/4/2008 12:05 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Yes I almost overlooked the " ox close by " . If there's one place you need your oxygen its the shower. In fact, you may need to turn it up. Stools and hand helds become the norms. Rails either over the side or on the wall or both to help balance and get in and out also become called for sometimes. Of course we all wish we could afford those walk in tubs. I've even seen recently some very odd devices that you could sit on and were electric and would lower you into and then raise you back out of the tub, but not sure how well they really work and they are too expensive too. So, once it becomes too much, even with the oxygen, it becomes stool, hand held and curtain open at least a good part of the way. I realize you have several factors, particularly no medical insurance working against transplant, but have you talked to the transplant people at the nearest state teaching hospital that does them? Many do have some programs plus there are some national transplant funds. I don't want to give you unreasonable hope as I don't know that you can overcome that or the other issues, but its worth at least some follow up. Now, the weight is a definite " no " until within guidelines. Confirm with your attorney what taking early social security means as far as disability. Also, don't forget your eligibility in two years for medicare even without the disability and other eligibility you may have, depending on your state, for medicare or other assistance. Medicare does cover transplants. As to the age 65 limitation on transplants that is not an absolute, but age is more a " place in line " issue. As one potentially affected by it, I hate the fact we have limited organs and any decisions have to be made. However, I know that if everything else was equal and it was me versus a 35 year old with two young kids, objectively I'd choose them. > > > > Judy...thanks for the info. > > Boy that's tough to have no insurance. Disability should not be > hard to get. One tip: if you take an early S/S then you CANNOT later > change to disability. You get ONE or the OTHER. I was already on S/S > when I was dx and now can't get disability which may be better for us. > > If you need a support group you have been led to the best > there is. We have to be doing something right because everyone on > this board is glad to be here. Some slip away...that happens. But if > you make yourself available and join in, you'll love us. > > Have you had a second opinion Judy? Are you still on O2? > > In some areas 65 is the cut off age for transplant and also > weight is a huge factor. If you happen to be over weight (like I and > many others here) that will be a factor in transplant. > > I'm really sorry about Joe not being available emotionally. > We've just been talking about leveling with our spouses and asking > for what we want/need. Go back to the web site and read some past but > recent posts...good info. > > You aren't alone in feeling alone. > > BTW...here you are a newbie and I like adding age to > our 'signature'...I'm gonna go add mine too. I never remember ages of > members! See, you have contributed already. > > God bless > > > > Mama-Sher, ipf 3-06, OR. > > Don't fret about tomorrow, God is already there! > > more about me > > > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC > with > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they > bring > > me great joy..the dogs!!! hahahah. My husband Joe tries but he > isn't > > an emotional type person so he isn't someone I can talk to about > most > > things. > > I have 5 grown, married kids who all live up north. Three of them > > came at Christmas with their families and I was completely > > overwhelmed. It made me realize how much I have slipped in a > fairly > > short time. > > I was diagnosed this past April 07 but was previously mis- > diagnosed > > for more than a year. The family Dr. kept insisting I had a bad > case > > of asthma plus pneumonia and I needed to " ACCEPT IT. " After 5 > weeks > > of antibiotics with no change in me or my xray, he finally agreed > to > > send me to a Pulmonologist. That changed my life for the good and > > bad. He did many tests, ruled out Asthma and sent me for a CT > Scan. > > Also, he put me on oxygen 24/7 as my breathing was very labored. > When > > he diagnosed me with IPF he said I was at the serious end of the > > disease. I do feel myself slipping and that scares me. > > We have no medical insurance and I can't get any. I was also > denied > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > medical > > and a chance to get on the Transplant list. It doesn't look > likely > > for me and that makes me feel depressed if I think about it too > much. > > Still, I try very hard to keep a positive attitude and not dwell > on > > the things I can't do anymore. Instead, I think about all the > things > > I can still do and feel blessed. I need a support group. And > > hopefully, I can be support to others as well. I will always be > > available to talk whenever anyone needs a friend. I am one who > likes > > to give back. So, again, thank you all for being here! > > judybrown63 > > 04-07 IPF SC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Well, I think insurance and/or medicare should pay for some of the alternatives that would at least make it easier, like the walk in tubs. But of course thats just my thought. While those would still present humidity its not circling your head. I have a normal size tub and last time I tried to get in and out to take a bath, I ended up in physical therapy. Now if one had home health care, I guess you could get an aide to give you a sponge bath or otherwise a spouse. I had my first in the hospital and I didn't think it would feel the same before, but I felt quite clean and refreshed (now maybe I was just desparate by then). I admit to being a bit taken back at first by a near stranger of the opposite sex bathing me completely but I got over that easily. > > > > > > > > Judy...thanks for the info. > > > > Boy that's tough to have no insurance. Disability should not be > > > hard to get. One tip: if you take an early S/S then you CANNOT later > > > change to disability. You get ONE or the OTHER. I was already on S/S > > > when I was dx and now can't get disability which may be better for > us. > > > > If you need a support group you have been led to the best > > > there is. We have to be doing something right because everyone on > > > this board is glad to be here. Some slip away...that happens. But if > > > you make yourself available and join in, you'll love us. > > > > Have you had a second opinion Judy? Are you still on O2? > > > > In some areas 65 is the cut off age for transplant and also > > > weight is a huge factor. If you happen to be over weight (like I and > > > many others here) that will be a factor in transplant. > > > > I'm really sorry about Joe not being available emotionally. > > > We've just been talking about leveling with our spouses and asking > > > for what we want/need. Go back to the web site and read some past > but > > > recent posts...good info. > > > > You aren't alone in feeling alone. > > > > BTW...here you are a newbie and I like adding age to > > > our 'signature'...I'm gonna go add mine too. I never remember ages > of > > > members! See, you have contributed already. > > > > God bless > > > > > > > > Mama-Sher, ipf 3-06, OR. > > > > Don't fret about tomorrow, God is already there! > > > > more about me > > > > > > > > > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC > > > with > > > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they > > > bring > > > > me great joy..the dogs!!! hahahah. My husband Joe tries but he > > > isn't > > > > an emotional type person so he isn't someone I can talk to about > > > most > > > > things. > > > > I have 5 grown, married kids who all live up north. Three of them > > > > came at Christmas with their families and I was completely > > > > overwhelmed. It made me realize how much I have slipped in a > > > fairly > > > > short time. > > > > I was diagnosed this past April 07 but was previously mis- > > > diagnosed > > > > for more than a year. The family Dr. kept insisting I had a bad > > > case > > > > of asthma plus pneumonia and I needed to " ACCEPT IT. " After 5 > > > weeks > > > > of antibiotics with no change in me or my xray, he finally agreed > > > to > > > > send me to a Pulmonologist. That changed my life for the good and > > > > bad. He did many tests, ruled out Asthma and sent me for a CT > > > Scan. > > > > Also, he put me on oxygen 24/7 as my breathing was very labored. > > > When > > > > he diagnosed me with IPF he said I was at the serious end of the > > > > disease. I do feel myself slipping and that scares me. > > > > We have no medical insurance and I can't get any. I was also > > > denied > > > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > > > medical > > > > and a chance to get on the Transplant list. It doesn't look > > > likely > > > > for me and that makes me feel depressed if I think about it too > > > much. > > > > Still, I try very hard to keep a positive attitude and not dwell > > > on > > > > the things I can't do anymore. Instead, I think about all the > > > things > > > > I can still do and feel blessed. I need a support group. And > > > > hopefully, I can be support to others as well. I will always be > > > > available to talk whenever anyone needs a friend. I am one who > > > likes > > > > to give back. So, again, thank you all for being here! > > > > judybrown63 > > > > 04-07 IPF SC > > > > > > > > > > > > > > > > >------------------------------------------------------------------- ----\ > - > > > > > >No virus found in this incoming message. > > >Checked by AVG Free Edition. > > >Version: 7.5.516 / Virus Database: 269.17.13/1209 - Release Date: > 1/4/2008 12:05 PM > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Joyce i didnt know that, you had a CT and Bronchoscope and they still did that. Did they not see anything on the CT or exactly what did they find then? Judy welcome sorry you had to find us under the conditions but glad you found this group- you like me have lots of pets,me to and I find great joy in my pets as well, my husband is the same as yours and we have had a tough time lately. I do work, 2 jobs because without a positive ID to what i have I cant go anywhere so I drag to work every day. I do have health insurance and even then its a bear to get things done. It amazes me what disability and SS make people do, if you look it was people like us who have worked forever that put the money in the account yet we cant get money out. I did see a glimpse you took early SS at 62 but that still shouldnt matter, its there for that reason. Hopefully your attorney will be able to get you some benefits and health insurance is the utmost importance how is it your supposed to survive without it! My fingers are crossed for you! Sandie suffering succotash, WI 2007 > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > > an emotional type person so he isn't someone I can talk to about most > > things. > > I have 5 grown, married kids who all live up north. Three of them > > came at Christmas with their families and I was completely > > overwhelmed. It made me realize how much I have slipped in a fairly > > short time. > > I was diagnosed this past April 07 but was previously mis- diagnosed > > for more than a year. The family Dr. kept insisting I had a bad case > > of asthma plus pneumonia and I needed to " ACCEPT IT. " After 5 weeks > > of antibiotics with no change in me or my xray, he finally agreed to > > send me to a Pulmonologist. That changed my life for the good and > > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > > Also, he put me on oxygen 24/7 as my breathing was very labored. When > > he diagnosed me with IPF he said I was at the serious end of the > > disease. I do feel myself slipping and that scares me. > > We have no medical insurance and I can't get any. I was also denied > > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > > and a chance to get on the Transplant list. It doesn't look likely > > for me and that makes me feel depressed if I think about it too much. > > Still, I try very hard to keep a positive attitude and not dwell on > > the things I can't do anymore. Instead, I think about all the things > > I can still do and feel blessed. I need a support group. And > > hopefully, I can be support to others as well. I will always be > > available to talk whenever anyone needs a friend. I am one who likes > > to give back. So, again, thank you all for being here! > > judybrown63 > > 04-07 IPF SC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Judy, Put your 02 ON it is rubber it won't hurt it and you can enjoy yes actually enjoy a shower. Turn your L flow up a d just go girl go--smell sweet.. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Sher thanks for your kind reply. i'm thinking about what you wrote about ssd. I took an early soc. sec. when i turned 62. so are you saying even though i have a lawyer, i won't be granted ssd?I haven't had a second opinion but feel certain it's what i have. the ct scan confirmed it, my xrays have the scarring and my fingers have recently clubbed. they look like ET's Fingertips! I've been on oxygen since diagnosis in april 07. in the beginning, i didn't need it all the time..now i can't walk a few feet without severe breathlessness with or without it. I feel discouraged because i really wanted the option of a transplant. no medical kind of seals my fate. In addition, i am overweight thanks to prednisone. I am going to try going off of it after i see my dr. in a few weeks as it doesn't seem to be helping me any way. I am wondering if anyone else has a problem with bathing? I use a stool in the shower, have my ox. close by, but it is the hardest thing i do..there are times i choose being smelly rather than putting myself through it! ewww! and last week i actually fell off the stool and fell with my legs all twisted..i finally had to laugh so i didn't cry..it was like a cicus act trying to get out of the tub! i ended up with a huge bruise on my butt. take care and god bless,judybrown63 ipf 4/07 sc>> Judy...thanks for the info.> Boy that's tough to have no insurance. Disability should not be hard to get. One tip: if you take an early S/S then you CANNOT later change to disability. You get ONE or the OTHER. I was already on S/S when I was dx and now can't get disability which may be better for us.> If you need a support group you have been led to the best there is. We have to be doing something right because everyone on this board is glad to be here. Some slip away...that happens. But if you make yourself available and join in, you'll love us.> Have you had a second opinion Judy? Are you still on O2?> In some areas 65 is the cut off age for transplant and also weight is a huge factor. If you happen to be over weight (like I and many others here) that will be a factor in transplant.> I'm really sorry about Joe not being available emotionally. We've just been talking about leveling with our spouses and asking for what we want/need. Go back to the web site and read some past but recent posts...good info.> You aren't alone in feeling alone.> BTW...here you are a newbie and I like adding age to our 'signature'...I'm gonna go add mine too. I never remember ages of members! See, you have contributed already.> God bless> > Mama-Sher, ipf 3-06, OR.> Don't fret about tomorrow, God is already there!> more about me> > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > an emotional type person so he isn't someone I can talk to about most > things.> I have 5 grown, married kids who all live up north. Three of them > came at Christmas with their families and I was completely > overwhelmed. It made me realize how much I have slipped in a fairly > short time.> I was diagnosed this past April 07 but was previously mis-diagnosed > for more than a year. The family Dr. kept insisting I had a bad case > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 weeks > of antibiotics with no change in me or my xray, he finally agreed to > send me to a Pulmonologist. That changed my life for the good and > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > Also, he put me on oxygen 24/7 as my breathing was very labored. When > he diagnosed me with IPF he said I was at the serious end of the > disease. I do feel myself slipping and that scares me. > We have no medical insurance and I can't get any. I was also denied > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > and a chance to get on the Transplant list. It doesn't look likely > for me and that makes me feel depressed if I think about it too much. > Still, I try very hard to keep a positive attitude and not dwell on > the things I can't do anymore. Instead, I think about all the things > I can still do and feel blessed. I need a support group. And > hopefully, I can be support to others as well. I will always be > available to talk whenever anyone needs a friend. I am one who likes > to give back. So, again, thank you all for being here!> judybrown63 > 04-07 IPF SC> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 I do turn mine up as well. And only time I even know I'm on oxygen is washing my face. Now, I can imagine how it gets later, but I've coughed in the shower for a long time and not known why. Now, with oxygen I do better, but when I get out I do generally have a coughing bout and need to relax for a few minutes. Yes, robes have been removed from non-use. > > > > Judy...thanks for the info. > > Boy that's tough to have no insurance. Disability should not be > hard to get. One tip: if you take an early S/S then you CANNOT later > change to disability. You get ONE or the OTHER. I was already on S/S > when I was dx and now can't get disability which may be better for us. > > If you need a support group you have been led to the best > there is. We have to be doing something right because everyone on > this board is glad to be here. Some slip away...that happens. But if > you make yourself available and join in, you'll love us. > > Have you had a second opinion Judy? Are you still on O2? > > In some areas 65 is the cut off age for transplant and also > weight is a huge factor. If you happen to be over weight (like I and > many others here) that will be a factor in transplant. > > I'm really sorry about Joe not being available emotionally. > We've just been talking about leveling with our spouses and asking > for what we want/need. Go back to the web site and read some past but > recent posts...good info. > > You aren't alone in feeling alone. > > BTW...here you are a newbie and I like adding age to > our 'signature'...I'm gonna go add mine too. I never remember ages of > members! See, you have contributed already. > > God bless > > > > Mama-Sher, ipf 3-06, OR. > > Don't fret about tomorrow, God is already there! > > more about me > > > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC > with > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they > bring > > me great joy..the dogs!!! hahahah. My husband Joe tries but he > isn't > > an emotional type person so he isn't someone I can talk to about > most > > things. > > I have 5 grown, married kids who all live up north. Three of them > > came at Christmas with their families and I was completely > > overwhelmed. It made me realize how much I have slipped in a > fairly > > short time. > > I was diagnosed this past April 07 but was previously mis- > diagnosed > > for more than a year. The family Dr. kept insisting I had a bad > case > > of asthma plus pneumonia and I needed to " ACCEPT IT. " After 5 > weeks > > of antibiotics with no change in me or my xray, he finally agreed > to > > send me to a Pulmonologist. That changed my life for the good and > > bad. He did many tests, ruled out Asthma and sent me for a CT > Scan. > > Also, he put me on oxygen 24/7 as my breathing was very labored. > When > > he diagnosed me with IPF he said I was at the serious end of the > > disease. I do feel myself slipping and that scares me. > > We have no medical insurance and I can't get any. I was also > denied > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > medical > > and a chance to get on the Transplant list. It doesn't look > likely > > for me and that makes me feel depressed if I think about it too > much. > > Still, I try very hard to keep a positive attitude and not dwell > on > > the things I can't do anymore. Instead, I think about all the > things > > I can still do and feel blessed. I need a support group. And > > hopefully, I can be support to others as well. I will always be > > available to talk whenever anyone needs a friend. I am one who > likes > > to give back. So, again, thank you all for being here! > > judybrown63 > > 04-07 IPF SC > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Bruce, One more shower tip. A long handled back brush. You can cover a lot with one and not have to exert as much energy. Coughing in the shower is usually water being a little to hot creating steam.. Have a good week-end. My daughter is here so I will have one I know. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." I do turn mine up as well. And only time I even know I'm on oxygen is washing my face. Now, I can imagine how it gets later, but I've coughed in the shower for a long time and not known why. Now, with oxygen I do better, but when I get out I do generally have a coughing bout and need to relax for a few minutes. Yes, robes have been removed from non-use.> >> > Judy...thanks for the info.> > Boy that's tough to have no insurance. Disability should not be> hard to get. One tip: if you take an early S/S then you CANNOT later> change to disability. You get ONE or the OTHER. I was already on S/S> when I was dx and now can't get disability which may be better for us.> > If you need a support group you have been led to the best> there is. We have to be doing something right because everyone on> this board is glad to be here. Some slip away...that happens. But if> you make yourself available and join in, you'll love us.> > Have you had a second opinion Judy? Are you still on O2?> > In some areas 65 is the cut off age for transplant and also> weight is a huge factor. If you happen to be over weight (like I and> many others here) that will be a factor in transplant.> > I'm really sorry about Joe not being available emotionally.> We've just been talking about leveling with our spouses and asking> for what we want/need. Go back to the web site and read some past but> recent posts...good info.> > You aren't alone in feeling alone.> > BTW...here you are a newbie and I like adding age to> our 'signature'...I'm gonna go add mine too. I never remember ages of> members! See, you have contributed already.> > God bless> >> > Mama-Sher, ipf 3-06, OR.> > Don't fret about tomorrow, God is already there!> > more about me> >> >> > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC> with> > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they> bring> > me great joy..the dogs!!! hahahah. My husband Joe tries but he> isn't> > an emotional type person so he isn't someone I can talk to about> most> > things.> > I have 5 grown, married kids who all live up north. Three of them> > came at Christmas with their families and I was completely> > overwhelmed. It made me realize how much I have slipped in a> fairly> > short time.> > I was diagnosed this past April 07 but was previously mis-> diagnosed> > for more than a year. The family Dr. kept insisting I had a bad> case> > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5> weeks> > of antibiotics with no change in me or my xray, he finally agreed> to> > send me to a Pulmonologist. That changed my life for the good and> > bad. He did many tests, ruled out Asthma and sent me for a CT> Scan.> > Also, he put me on oxygen 24/7 as my breathing was very labored.> When> > he diagnosed me with IPF he said I was at the serious end of the> > disease. I do feel myself slipping and that scares me.> > We have no medical insurance and I can't get any. I was also> denied> > Soc. Sec. Dis. and have a lawyer to fight it. I really need> medical> > and a chance to get on the Transplant list. It doesn't look> likely> > for me and that makes me feel depressed if I think about it too> much.> > Still, I try very hard to keep a positive attitude and not dwell> on> > the things I can't do anymore. Instead, I think about all the> things> > I can still do and feel blessed. I need a support group. And> > hopefully, I can be support to others as well. I will always be> > available to talk whenever anyone needs a friend. I am one who> likes> > to give back. So, again, thank you all for being here!> > judybrown63> > 04-07 IPF SC> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Sandie, They kept treating me with abs for pneumonia for months. Then the pulmo said it was probably tuberculosis. He wanted to start treatment before completing all the testing and I said no. He then dismissed me as a patient. After a few more months of suffering and getting weaker, I went to a new pulmo. Who is my old doc now....he got old, not me. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC > with> > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they > bring> > > me great joy..the dogs!!! hahahah. My husband Joe tries but he > isn't> > > an emotional type person so he isn't someone I can talk to about > most> > > things.> > > I have 5 grown, married kids who all live up north. Three of them> > > came at Christmas with their families and I was completely> > > overwhelmed. It made me realize how much I have slipped in a > fairly> > > short time.> > > I was diagnosed this past April 07 but was previously mis-> diagnosed> > > for more than a year. The family Dr. kept insisting I had a bad > case> > > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 > weeks> > > of antibiotics with no change in me or my xray, he finally agreed > to> > > send me to a Pulmonologist. That changed my life for the good and> > > bad. He did many tests, ruled out Asthma and sent me for a CT > Scan.> > > Also, he put me on oxygen 24/7 as my breathing was very labored. > When> > > he diagnosed me with IPF he said I was at the serious end of the> > > disease. I do feel myself slipping and that scares me.> > > We have no medical insurance and I can't get any. I was also > denied> > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > medical> > > and a chance to get on the Transplant list. It doesn't look likely> > > for me and that makes me feel depressed if I think about it too > much.> > > Still, I try very hard to keep a positive attitude and not dwell > on> > > the things I can't do anymore. Instead, I think about all the > things> > > I can still do and feel blessed. I need a support group. And> > > hopefully, I can be support to others as well. I will always be> > > available to talk whenever anyone needs a friend. I am one who > likes> > > to give back. So, again, thank you all for being here!> > > judybrown63> > > 04-07 IPF SC> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Joyce I love this " dismissal as patient " routine. I had one practice wouldn't see me for something entirely different and another doctor, because I had been " dismissed as a patient. " No, actually, it was more like " no, I don't need another appointment with Dr. X. I will not be returning.....ever....to see her and end up with her wannabe assistant who just wants to argue with me about what I said last time regarding how I felt. In your case, you made a decision. Why do doctors get this god complex? It's not their life. But if we keep searching we do find those we can connect and communicate with and then we're much more comfortable. Just glad you have a jewel for a Doctor now. > > > > > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC > > with > > > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they > > bring > > > > me great joy..the dogs!!! hahahah. My husband Joe tries but he > > isn't > > > > an emotional type person so he isn't someone I can talk to about > > most > > > > things. > > > > I have 5 grown, married kids who all live up north. Three of them > > > > came at Christmas with their families and I was completely > > > > overwhelmed. It made me realize how much I have slipped in a > > fairly > > > > short time. > > > > I was diagnosed this past April 07 but was previously mis- > > diagnosed > > > > for more than a year. The family Dr. kept insisting I had a bad > > case > > > > of asthma plus pneumonia and I needed to " ACCEPT IT. " After 5 > > weeks > > > > of antibiotics with no change in me or my xray, he finally agreed > > to > > > > send me to a Pulmonologist. That changed my life for the good and > > > > bad. He did many tests, ruled out Asthma and sent me for a CT > > Scan. > > > > Also, he put me on oxygen 24/7 as my breathing was very labored. > > When > > > > he diagnosed me with IPF he said I was at the serious end of the > > > > disease. I do feel myself slipping and that scares me. > > > > We have no medical insurance and I can't get any. I was also > > denied > > > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > > medical > > > > and a chance to get on the Transplant list. It doesn't look likely > > > > for me and that makes me feel depressed if I think about it too > > much. > > > > Still, I try very hard to keep a positive attitude and not dwell > > on > > > > the things I can't do anymore. Instead, I think about all the > > things > > > > I can still do and feel blessed. I need a support group. And > > > > hopefully, I can be support to others as well. I will always be > > > > available to talk whenever anyone needs a friend. I am one who > > likes > > > > to give back. So, again, thank you all for being here! > > > > judybrown63 > > > > 04-07 IPF SC > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Judy...Re: ssd...I never had an atty. so I can't speak to what he may be able to do. But SS was adamant about being on one or the other. Ask your atty. Or better yet, call SS and ask these questions...they don't know you...get it straight from them. Some attys. would milk this, knowing you can't get it. But I guess they get paid by what the get for you. Nothin' from nothin' leaves nothin'. I'd sure encourage you to get a second opinion. Not because you doubt the first but because a fatal diagnosis demands/deserves a second opinion. Plus the second one will give you information and you can compare one and two. DON'T go off prednisone on your own. You have to wean yourself down. You haven't been here long enough to read the stories of those who went 'cold turkey'. Prednisone won't cure our disease and isn't even a treatment per se. All we get are side effects. Short term use can be beneficial, but I'll leave the "P" use to those more experienced using it. I won't use it. Yes, there has been talk about bathing on the board. Someone will reply to you who had/has that problem now. I don't. I know a stool helps but be sure and have rubber feet on the stool! Gosh, what a fall. I do know you can use the O2 right into the shower through your canula. I think it's Joyce who has talked about that. Are you saying you cannot stand to take a shower or you cannot breath while you shower or both? You take care too. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! more about me> > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > an emotional type person so he isn't someone I can talk to about most > things.> I have 5 grown, married kids who all live up north. Three of them > came at Christmas with their families and I was completely > overwhelmed. It made me realize how much I have slipped in a fairly > short time.> I was diagnosed this past April 07 but was previously mis-diagnosed > for more than a year. The family Dr. kept insisting I had a bad case > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 weeks > of antibiotics with no change in me or my xray, he finally agreed to > send me to a Pulmonologist. That changed my life for the good and > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > Also, he put me on oxygen 24/7 as my breathing was very labored. When > he diagnosed me with IPF he said I was at the serious end of the > disease. I do feel myself slipping and that scares me. > We have no medical insurance and I can't get any. I was also denied > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > and a chance to get on the Transplant list. It doesn't look likely > for me and that makes me feel depressed if I think about it too much. > Still, I try very hard to keep a positive attitude and not dwell on > the things I can't do anymore. Instead, I think about all the things > I can still do and feel blessed. I need a support group. And > hopefully, I can be support to others as well. I will always be > available to talk whenever anyone needs a friend. I am one who likes > to give back. So, again, thank you all for being here!> judybrown63 > 04-07 IPF SC> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi Ze, Thank you for the welcome! It's taking me awhile to figure out what to do with 2oo messages in my inbox! I'm sure there's something i'm not doing right yet! Re: more about me Hi Judy, I can't remember if I've said Hi or not yet, so I figured that saying it twice would be nicer than not at all Welcome to our corner of the internet, but I'm sorry that you have to be here. I'm fairly new and have found this place a wealth of advice and support. I'm from across the pond, so I reply at odd times too. Love Ze x Dermatomyositis, pulmonary fibrosis and some more, for years!> > > > >> > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in > SC > > > with> > > > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day > they > > > bring> > > > > me great joy...the dogs!!! hahahah. My husband Joe tries but > he > > > isn't> > > > > an emotional type person so he isn't someone I can talk to > about > > > most> > > > > things.> > > > > I have 5 grown, married kids who all live up north. Three of > them> > > > > came at Christmas with their families and I was completely> > > > > overwhelmed. It made me realize how much I have slipped in a > > > fairly> > > > > short time.> > > > > I was diagnosed this past April 07 but was previously mis-> > > diagnosed> > > > > for more than a year. The family Dr. kept insisting I had a > bad > > > case> > > > > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 > > > weeks> > > > > of antibiotics with no change in me or my xray, he finally > agreed > > > to> > > > > send me to a Pulmonologist. That changed my life for the good > and> > > > > bad. He did many tests, ruled out Asthma and sent me for a CT > > > Scan.> > > > > Also, he put me on oxygen 24/7 as my breathing was very > labored. > > > When> > > > > he diagnosed me with IPF he said I was at the serious end of > the> > > > > disease. I do feel myself slipping and that scares me.> > > > > We have no medical insurance and I can't get any. I was also > > > denied> > > > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > > > medical> > > > > and a chance to get on the Transplant list. It doesn't look > likely> > > > > for me and that makes me feel depressed if I think about it > too > > > much.> > > > > Still, I try very hard to keep a positive attitude and not > dwell > > > on> > > > > the things I can't do anymore. Instead, I think about all the > > > things> > > > > I can still do and feel blessed. I need a support group. And> > > > > hopefully, I can be support to others as well. I will always > be> > > > > available to talk whenever anyone needs a friend. I am one > who > > > likes> > > > > to give back. So, again, thank you all for being here!> > > > > judybrown63> > > > > 04-07 IPF SC> > > > >> > > >> > >> > > > > > > > > > > > > > ------------ --------- --------- ---> > Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> >> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Are you getting them as individual messages? If so, I would suggest going to " My Groups " at the top of this page and changing so they are sent as groups of messages. The other option is to just read them here. But, each individual message to your inbox I would think would be too much. > > > > > > > > > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in > > SC > > > > with > > > > > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day > > they > > > > bring > > > > > > me great joy..the dogs!!! hahahah. My husband Joe tries but > > he > > > > isn't > > > > > > an emotional type person so he isn't someone I can talk to > > about > > > > most > > > > > > things. > > > > > > I have 5 grown, married kids who all live up north. Three of > > them > > > > > > came at Christmas with their families and I was completely > > > > > > overwhelmed. It made me realize how much I have slipped in a > > > > fairly > > > > > > short time. > > > > > > I was diagnosed this past April 07 but was previously mis- > > > > diagnosed > > > > > > for more than a year. The family Dr. kept insisting I had a > > bad > > > > case > > > > > > of asthma plus pneumonia and I needed to " ACCEPT IT. " After 5 > > > > weeks > > > > > > of antibiotics with no change in me or my xray, he finally > > agreed > > > > to > > > > > > send me to a Pulmonologist.. That changed my life for the good > > and > > > > > > bad. He did many tests, ruled out Asthma and sent me for a CT > > > > Scan. > > > > > > Also, he put me on oxygen 24/7 as my breathing was very > > labored. > > > > When > > > > > > he diagnosed me with IPF he said I was at the serious end of > > the > > > > > > disease. I do feel myself slipping and that scares me. > > > > > > We have no medical insurance and I can't get any. I was also > > > > denied > > > > > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > > > > medical > > > > > > and a chance to get on the Transplant list. It doesn't look > > likely > > > > > > for me and that makes me feel depressed if I think about it > > too > > > > much. > > > > > > Still, I try very hard to keep a positive attitude and not > > dwell > > > > on > > > > > > the things I can't do anymore. Instead, I think about all the > > > > things > > > > > > I can still do and feel blessed. I need a support group. And > > > > > > hopefully, I can be support to others as well. I will always > > be > > > > > > available to talk whenever anyone needs a friend. I am one > > who > > > > likes > > > > > > to give back. So, again, thank you all for being here! > > > > > > judybrown63 > > > > > > 04-07 IPF SC > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > ------------ --------- --------- --- > > > Looking for last minute shopping deals? Find them fast with Yahoo! > > Search. > > > > > > > > > > ______________________________________________________________________ ______________ > Never miss a thing. Make Yahoo your home page. > http://www.yahoo.com/r/hs > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Hi Judy Brown, LOL I know what you mean about having 200 messages. Some days it is really crazy. I sometimes just delete and go to the home page of the board and read the messages at your leisure. You can change the way you receive posts there too. It's good to have you here. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Hi Ze,Thank you for the welcome! It's taking me awhile to figure out what to do with 2oo messages in my inbox! I'm sure there's something i'm not doing right yet! Re: more about meHi Judy,I can't remember if I've said Hi or not yet, so I figured that saying it twice would be nicer than not at all Welcome to our corner of the internet, but I'm sorry that you have to be here. I'm fairly new and have found this place a wealth of advice and support. I'm from across the pond, so I reply at odd times too.Love Ze x Dermatomyositis, pulmonary fibrosis and some more, for years!> > > > >> > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in > SC > > > with> > > > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day > they > > > bring> > > > > me great joy...the dogs!!! hahahah. My husband Joe tries but > he > > > isn't> > > > > an emotional type person so he isn't someone I can talk to > about > > > most> > > > > things.> > > > > I have 5 grown, married kids who all live up north. Three of > them> > > > > came at Christmas with their families and I was completely> > > > > overwhelmed. It made me realize how much I have slipped in a > > > fairly> > > > > short time.> > > > > I was diagnosed this past April 07 but was previously mis-> > > diagnosed> > > > > for more than a year. The family Dr. kept insisting I had a > bad > > > case> > > > > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 > > > weeks> > > > > of antibiotics with no change in me or my xray, he finally > agreed > > > to> > > > > send me to a Pulmonologist. That changed my life for the good > and> > > > > bad. He did many tests, ruled out Asthma and sent me for a CT > > > Scan.> > > > > Also, he put me on oxygen 24/7 as my breathing was very > labored. > > > When> > > > > he diagnosed me with IPF he said I was at the serious end of > the> > > > > disease. I do feel myself slipping and that scares me.> > > > > We have no medical insurance and I can't get any. I was also > > > denied> > > > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > > > medical> > > > > and a chance to get on the Transplant list. It doesn't look > likely> > > > > for me and that makes me feel depressed if I think about it> too > > > much.> > > > > Still, I try very hard to keep a positive attitude and not > dwell > > > on> > > > > the things I can't do anymore. Instead, I think about all the> > > things> > > > > I can still do and feel blessed. I need a support group. And> > > > > hopefully, I can be support to others as well. I will always > be> > > > > available to talk whenever anyone needs a friend. I am one> who > > > likes> > > > > to give back. So, again, thank you all for being here!> > > > > judybrown63> > > > > 04-07 IPF SC> > > > >> > > >> > >> > > > > > > > > > > > > > ------------ --------- --------- ---> > Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> >>Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Judy...if you miss a day or two reading/deleting mail it's easy to get 200 emails in your inbox. You can go back to the web, click on edit membership and the click option to read mail on the web only. I have mine in my inbox but lots don't. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! Re: more about me Hi Judy, I can't remember if I've said Hi or not yet, so I figured that saying it twice would be nicer than not at all Welcome to our corner of the internet, but I'm sorry that you have to be here. I'm fairly new and have found this place a wealth of advice and support. I'm from across the pond, so I reply at odd times too. Love Ze x Dermatomyositis, pulmonary fibrosis and some more, for years!> > > > >> > > > > Well, my name is Judy Brown and I am 63 yrs. old. I live in > SC > > > with> > > > > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day > they > > > bring> > > > > me great joy...the dogs!!! hahahah. My husband Joe tries but > he > > > isn't> > > > > an emotional type person so he isn't someone I can talk to > about > > > most> > > > > things.> > > > > I have 5 grown, married kids who all live up north. Three of > them> > > > > came at Christmas with their families and I was completely> > > > > overwhelmed. It made me realize how much I have slipped in a > > > fairly> > > > > short time.> > > > > I was diagnosed this past April 07 but was previously mis-> > > diagnosed> > > > > for more than a year. The family Dr. kept insisting I had a > bad > > > case> > > > > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 > > > weeks> > > > > of antibiotics with no change in me or my xray, he finally > agreed > > > to> > > > > send me to a Pulmonologist. That changed my life for the good > and> > > > > bad. He did many tests, ruled out Asthma and sent me for a CT > > > Scan.> > > > > Also, he put me on oxygen 24/7 as my breathing was very > labored. > > > When> > > > > he diagnosed me with IPF he said I was at the serious end of > the> > > > > disease. I do feel myself slipping and that scares me.> > > > > We have no medical insurance and I can't get any. I was also > > > denied> > > > > Soc. Sec. Dis. and have a lawyer to fight it. I really need > > > medical> > > > > and a chance to get on the Transplant list. It doesn't look > likely> > > > > for me and that makes me feel depressed if I think about it > too > > > much.> > > > > Still, I try very hard to keep a positive attitude and not > dwell > > > on> > > > > the things I can't do anymore. Instead, I think about all the > > > things> > > > > I can still do and feel blessed. I need a support group. And> > > > > hopefully, I can be support to others as well. I will always > be> > > > > available to talk whenever anyone needs a friend. I am one > who > > > likes> > > > > to give back. So, again, thank you all for being here!> > > > > judybrown63> > > > > 04-07 IPF SC> > > > >> > > >> > >> > > > > > > > > > > > > > ------------ --------- --------- ---> > Looking for last minute shopping deals? Find them fast with Yahoo! > Search.> >> Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Hi Judy. I am also from SC. I live in ton. I am seeing a pulmonologist in Summerville. Was diagnosed before Christmas with IPF but looks like I have had it for a while. I had pneumonia twice in the last 9 months or at least what my Primary Care thought was pnemonia. I have a biopsy scheduled for next week (VATS) to definitively identify IPF plus to see if some medications are effective. I am 46 and up until 9 months ago was a long distance runner. That is a distant memory now. Want to encourage you and everyone else on this forum. I was doing my Bible study (BSF) this last week on 12. It reminded me that Christ is Lord of all and has defeated Satan. It may not feel like it but He has defeated the sting of death and welcomes us into His family. That I can rest my hope. Thanks for the opportunity to share. > > Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > an emotional type person so he isn't someone I can talk to about most > things. > I have 5 grown, married kids who all live up north. Three of them > came at Christmas with their families and I was completely > overwhelmed. It made me realize how much I have slipped in a fairly > short time. > I was diagnosed this past April 07 but was previously mis-diagnosed > for more than a year. The family Dr. kept insisting I had a bad case > of asthma plus pneumonia and I needed to " ACCEPT IT. " After 5 weeks > of antibiotics with no change in me or my xray, he finally agreed to > send me to a Pulmonologist. That changed my life for the good and > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > Also, he put me on oxygen 24/7 as my breathing was very labored. When > he diagnosed me with IPF he said I was at the serious end of the > disease. I do feel myself slipping and that scares me. > We have no medical insurance and I can't get any. I was also denied > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > and a chance to get on the Transplant list. It doesn't look likely > for me and that makes me feel depressed if I think about it too much. > Still, I try very hard to keep a positive attitude and not dwell on > the things I can't do anymore. Instead, I think about all the things > I can still do and feel blessed. I need a support group. And > hopefully, I can be support to others as well. I will always be > available to talk whenever anyone needs a friend. I am one who likes > to give back. So, again, thank you all for being here! > judybrown63 > 04-07 IPF SC > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Todd, Thanks for sharing. I am sorry I don't remember all of your story but I am just heart broken to welcome another young person to this group. You will learn so much and I'm sure you will share your experiences with us. Thats how we learn. God Bless You. I know you will have the strength He gives when His children ask. I will be praying for you. Take Care of You. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Hi Judy.I am also from SC. I live in ton. I am seeing a pulmonologist in Summerville. Was diagnosed before Christmas with IPF but looks like I have had it for a while. I had pneumonia twice in the last 9 months or at least what my Primary Care thought was pnemonia. I have a biopsy scheduled for next week (VATS) to definitively identify IPF plus to see if some medications are effective. I am 46 and up until 9 months ago was a long distance runner. That is a distant memory now.Want to encourage you and everyone else on this forum. I was doing my Bible study (BSF) this last week on 12. It reminded me that Christ is Lord of all and has defeated Satan. It may not feel like it but He has defeated the sting of death and welcomes us into His family. That I can rest my hope.Thanks for the opportunity to share.>> Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > an emotional type person so he isn't someone I can talk to about most > things.> I have 5 grown, married kids who all live up north. Three of them > came at Christmas with their families and I was completely > overwhelmed. It made me realize how much I have slipped in a fairly > short time.> I was diagnosed this past April 07 but was previously mis-diagnosed > for more than a year. The family Dr. kept insisting I had a bad case > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 weeks > of antibiotics with no change in me or my xray, he finally agreed to > send me to a Pulmonologist. That changed my life for the good and > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > Also, he put me on oxygen 24/7 as my breathing was very labored. When > he diagnosed me with IPF he said I was at the serious end of the > disease. I do feel myself slipping and that scares me. > We have no medical insurance and I can't get any. I was also denied > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > and a chance to get on the Transplant list. It doesn't look likely > for me and that makes me feel depressed if I think about it too much. > Still, I try very hard to keep a positive attitude and not dwell on > the things I can't do anymore. Instead, I think about all the things > I can still do and feel blessed. I need a support group. And > hopefully, I can be support to others as well. I will always be > available to talk whenever anyone needs a friend. I am one who likes > to give back. So, again, thank you all for being here!> judybrown63 > 04-07 IPF SC> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 8, 2008 Report Share Posted January 8, 2008 Todd, I was reading your email to my husband and we both said wow, that's almost exactly what happened to me! I've had this disease for much longer I believe. i too was misdiagnosed with pneumonia twice 9 months apart. I didn't have the biopsy and don't plan to. I don't have any medical insurance for one thing, and i guess it doesn't make much sense to me at 63. there's no cure either way. My lungs already have much scarring..i saw for myself, it sounds like velcro when i breathe or whatever they call it. My fingertips have clubbed, and the CT scan supported the PF. My pulmonologist took all kinds of blood work to see if i had any of the AI diseases and I didn't. i am only taking 10 mg. of prednisone daily. I am in the process of weaning myself down to 5mg. daily and then stopping it altogether. it isn't really doing anything except dumping weight on me. So we'll see what happens when I go off. I do take NAC but have just started so I don't see any changes yet. Have you ever gone to MUC? I'm in touch with a head nurse there and bug her regularly to let me know when the next clinical trials program starts. Well, thank you for your comments. We are all in this together and while we can't cure the diseases we all have, the love, warmth and friendship here heals the heart. God bless! Judybrown63, IPF, 4/07, SC Re: more about me Hi Judy.I am also from SC. I live in ton. I am seeing a pulmonologist in Summerville. Was diagnosed before Christmas with IPF but looks like I have had it for a while. I had pneumonia twice in the last 9 months or at least what my Primary Care thought was pnemonia. I have a biopsy scheduled for next week (VATS) to definitively identify IPF plus to see if some medications are effective. I am 46 and up until 9 months ago was a long distance runner. That is a distant memory now.Want to encourage you and everyone else on this forum. I was doing my Bible study (BSF) this last week on 12. It reminded me that Christ is Lord of all and has defeated Satan. It may not feel like it but He has defeated the sting of death and welcomes us into His family. That I can rest my hope.Thanks for the opportunity to share.>> Well, my name is Judy Brown and I am 63 yrs. old. I live in SC with > my husband Joe and 3 dogs.(2 Goldens and a Lab) Every day they bring > me great joy..the dogs!!! hahahah. My husband Joe tries but he isn't > an emotional type person so he isn't someone I can talk to about most > things.> I have 5 grown, married kids who all live up north. Three of them > came at Christmas with their families and I was completely > overwhelmed. It made me realize how much I have slipped in a fairly > short time.> I was diagnosed this past April 07 but was previously mis-diagnosed > for more than a year. The family Dr. kept insisting I had a bad case > of asthma plus pneumonia and I needed to "ACCEPT IT." After 5 weeks > of antibiotics with no change in me or my xray, he finally agreed to > send me to a Pulmonologist. That changed my life for the good and > bad. He did many tests, ruled out Asthma and sent me for a CT Scan. > Also, he put me on oxygen 24/7 as my breathing was very labored. When > he diagnosed me with IPF he said I was at the serious end of the > disease. I do feel myself slipping and that scares me. > We have no medical insurance and I can't get any. I was also denied > Soc. Sec. Dis. and have a lawyer to fight it. I really need medical > and a chance to get on the Transplant list. It doesn't look likely > for me and that makes me feel depressed if I think about it too much. > Still, I try very hard to keep a positive attitude and not dwell on > the things I can't do anymore. Instead, I think about all the things > I can still do and feel blessed. I need a support group. And > hopefully, I can be support to others as well. I will always be > available to talk whenever anyone needs a friend. I am one who likes > to give back. So, again, thank you all for being here!> judybrown63 > 04-07 IPF SC> Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.