Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hello I was Hospitalized In December 2004 with serious breathing problems, I was already being ivestigated for other problems when this happened They did a scan of my Lungs which came back showing scarring I was immediatley started on Prednisolone and I started to recover, Into the new year of 2005 I had biopsy on my nose the reason being I developed a perforated septum while this was being done they also investigated my lungs Which came back a differential diagnoses of Wegeners Granulomatosis/ Sarcoidosis/ EAA. They have now told me at the North west Lung Centre in Manchester UK. That I am left with IPF. thomas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hi , Wow you have been through it. Welcome to our group. This is an amazing group. Ask any questions you want, someone will answer. I was also Dx in June of 2004. Are you on oxygen yet? We have several members in the UK. I'm sure you'll be hearing from them.Take care and stay in touch.God Bless. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." HelloI was Hospitalized In December 2004 with serious breathing problems, I was already being ivestigated for other problems when this happened They did a scan of my Lungs which came back showing scarring I was immediatley started on Prednisolone and I started to recover, Into the new year of 2005 I had biopsy on my nose the reason being I developed a perforated septum while this was being done they also investigated my lungs Which came back a differential diagnoses of Wegeners Granulomatosis/ Sarcoidosis/ EAA. They have now told me at the North west Lung Centre in Manchester UK. That I am left with IPF.thomas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 > > > Hello > > > > I was Hospitalized In December 2004 with serious breathing problems, I > > was already being ivestigated for other problems when this happened > > They did a scan of my Lungs which came back showing scarring I was > > immediatley started on Prednisolone and I started to recover, Into the > > new year of 2005 I had biopsy on my nose the reason being I developed > > a perforated septum while this was being done they also > > investigated my > > lungs Which came back a differential diagnoses of Wegeners > > Granulomatosis/ Sarcoidosis/ EAA. They have now told me at the North > > west Lung Centre in Manchester UK. That I am left with IPF. > > thomas > > > > Hello No I am not on oxygen yet ! But I am going to be started on Azerthioprine when I go back to the Lung centre in March, the reason they have not started this yet I got some funny results on my Liver function test and they wanted to check this out. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 Hi again , I hadn't noticed that you're in the UK. I'm just east of east London. Love Ze xx > > > > > Hello> > >> > > I was Hospitalized In December 2004 with serious breathing > problems, I> > > was already being ivestigated for other problems when this > happened> > > They did a scan of my Lungs which came back showing scarring I was> > > immediatley started on Prednisolone and I started to recover, > Into the> > > new year of 2005 I had biopsy on my nose the reason being I > developed> > > a perforated septum while this was being done they also > > > investigated my> > > lungs Which came back a differential diagnoses of Wegeners> > > Granulomatosis/ Sarcoidosis/ EAA. They have now told me at the > North> > > west Lung Centre in Manchester UK. That I am left with IPF.> > > thomas> > >> > > Hello> No I am not on oxygen yet ! But I am going to be started on > Azerthioprine when I go back to the Lung centre in March, the reason > they have not started this yet I got some funny results on my Liver > function test and they wanted to check this out.> > > > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 > > > > > > > Hello > > > > > > > > I was Hospitalized In December 2004 with serious breathing > > problems, I > > > > was already being ivestigated for other problems when this > > happened > > > > They did a scan of my Lungs which came back showing scarring I was > > > > immediatley started on Prednisolone and I started to recover, > > Into the > > > > new year of 2005 I had biopsy on my nose the reason being I > > developed > > > > a perforated septum while this was being done they also > > > > investigated my > > > > lungs Which came back a differential diagnoses of Wegeners > > > > Granulomatosis/ Sarcoidosis/ EAA. They have now told me at the > > North > > > > west Lung Centre in Manchester UK. That I am left with IPF. > > > > thomas > > > > > > > > Hello > > No I am not on oxygen yet ! But I am going to be started on > > Azerthioprine when I go back to the Lung centre in March, the reason > > they have not started this yet I got some funny results on my Liver > > function test and they wanted to check this out. > > > > > > > > > > > > > > I live in Oldham but originally from Manchester Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 ...welcome to you too. As to Brett we're sorry newbies come along with this dreadful disease but you'll be glad you found this group. A more caring, open, candid bunch you won't find. Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 ...it makes for easier reading if you will reply your post at the top instead of the bottom. Also to close with name, diagnosis and year diagnosed and what state or country. Thanks. Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2007 Report Share Posted December 10, 2007 And welcome, . I think my lapses are past OD today. Brain dead. Petunia (LeanneB) IPF 06/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 I am living in New London, Ohio (Ashland County). I do not know my way around very well yet. I am glad to hear from someone so close. Thank you for responding. Have you been evaluated for a lung transplant? The process seems so slow. Hope to chat soon. Take care, Tina > > > > Hi everyone. My name is Tina. I have been reading your posts for a > > while and finally got up the nerve to join in. I was diagnosed with > > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > > 3 children, 22, 18, and 5. My disease has been labeled as " fast > > progressing " and, therefore, I am no longer able to live on my own > > and I am living in Ohio with my mother and stepfather. My youngest > > child, my son, Kaleb, lives here too. I had to transfer him from > > his school in West Virginia (our hometown) to the new school in Ohio > > in November. My husband is a coal miner in West Virginia and he is > > still there working 7 days a week. Since my illness, he has had to > > pick up the slack on everything...including the bills. My two older > > children (both girls) are in college full-time and live on their > > own. I would love it if they were able to help me, but I can't ask > > them to give up their lives. I am thankful for my mother and her > > ability to still care for me. I always thought I would be the one > > to help take care of her, and here we are....not at all what we > > expected. I have been evaluated at the Cleveland Clinic and UPMC in > > Pittsburgh for a double lung transplant, however, some other health > > problems are keeping me from being listed. Also, I have learned I > > have a high " antibody " count, which means a compatible match would > > be much harder for me than most other people. I also have a heart > > defect that has been detected now. So far I have been told my heart > > is not strong enough for a lung transplant and my lungs are not > > strong enough for a heart operation. I have had my rounds of > > steroids and Imuran, but there were no changes in my condition. I > > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > > Clinic on January 9th and will, hopefully, have more definitive > > results of all of the testing. My BMI is also a hinderance. Since > > I am overweight, and unable to exercise, I watch what I eat, but do > > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > > 185 about one year ago - and the weight came on while on the > > steroids. I have been told they will not do the lung transplant > > until my BMI is below 30. I am at 39 now. I have had 2 > > hospitalizations this year for pneumonia and I am sick now. I know > > if I go to the hopsital I will be admitted, so I am trying to self- > > treat at home. I have my nebulizer fired up every 4 hours. I guess > > the reason I am here is because I am so sad. I feel terrible, but I > > thank God for every day that I have here. I have been blessed to > > have a wonderful family. My children are having a hard time dealing > > with me being sick and the inevitable downward spiral I seem to be > > on. Thank you for reading my post. I hope to make friends and > > receive support from this group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 I am living in New London, Ohio (Ashland County). I do not know my way around very well yet. I am glad to hear from someone so close. Thank you for responding. Have you been evaluated for a lung transplant? The process seems so slow. Hope to chat soon. Take care, Tina > > > > Hi everyone. My name is Tina. I have been reading your posts for a > > while and finally got up the nerve to join in. I was diagnosed with > > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > > 3 children, 22, 18, and 5. My disease has been labeled as " fast > > progressing " and, therefore, I am no longer able to live on my own > > and I am living in Ohio with my mother and stepfather. My youngest > > child, my son, Kaleb, lives here too. I had to transfer him from > > his school in West Virginia (our hometown) to the new school in Ohio > > in November. My husband is a coal miner in West Virginia and he is > > still there working 7 days a week. Since my illness, he has had to > > pick up the slack on everything...including the bills. My two older > > children (both girls) are in college full-time and live on their > > own. I would love it if they were able to help me, but I can't ask > > them to give up their lives. I am thankful for my mother and her > > ability to still care for me. I always thought I would be the one > > to help take care of her, and here we are....not at all what we > > expected. I have been evaluated at the Cleveland Clinic and UPMC in > > Pittsburgh for a double lung transplant, however, some other health > > problems are keeping me from being listed. Also, I have learned I > > have a high " antibody " count, which means a compatible match would > > be much harder for me than most other people. I also have a heart > > defect that has been detected now. So far I have been told my heart > > is not strong enough for a lung transplant and my lungs are not > > strong enough for a heart operation. I have had my rounds of > > steroids and Imuran, but there were no changes in my condition. I > > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > > Clinic on January 9th and will, hopefully, have more definitive > > results of all of the testing. My BMI is also a hinderance. Since > > I am overweight, and unable to exercise, I watch what I eat, but do > > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > > 185 about one year ago - and the weight came on while on the > > steroids. I have been told they will not do the lung transplant > > until my BMI is below 30. I am at 39 now. I have had 2 > > hospitalizations this year for pneumonia and I am sick now. I know > > if I go to the hopsital I will be admitted, so I am trying to self- > > treat at home. I have my nebulizer fired up every 4 hours. I guess > > the reason I am here is because I am so sad. I feel terrible, but I > > thank God for every day that I have here. I have been blessed to > > have a wonderful family. My children are having a hard time dealing > > with me being sick and the inevitable downward spiral I seem to be > > on. Thank you for reading my post. I hope to make friends and > > receive support from this group. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 Tina...........I'm afraid that I read your post and immediately hit the "reply" button.........without really knowing what to say. I guess I would say that I'm glad that you found your way to our (your) group. I'm sorry that it was necessary to find us. Your sadness comes through the wires.....know that you are not alone !!!! As far as your pneumonia is concerned, while I understand your not wanting to be admitted, I certainly hope you have a way to get some antibiotics. Levaquin is one you'll read about here.......miracle stuff, for me at least. I mention this because I've finally learned to attack the pneumonias and other ailments, if for no other reason, because of the direct relationship between the way I feel physical to the way I feel emotionally. If I'm not sick, I can handle this load that has been cast upon all of us. If I am sick.....well, let's just say that those days are better forgotten. I feel a strength in your writing, which is a wonderful attribute. You don't say what you are nebulizing.........I hope you get to feeling better SOON. I'll save my speech about anti-depressants until then. Hopefully, someone more eloquent than I can go there. Tina, I am glad you decided to share with us. YOU ARE NOT ALONE.!!! jim IPF 05 alaska tjnikita wrote: Hi everyone. My name is Tina. I have been reading your posts for a while and finally got up the nerve to join in. I was diagnosed with IPF in April, 2007, by open lung biopsy. I am 41 years old. I have 3 children, 22, 18, and 5. My disease has been labeled as "fast progressing" and, therefore, I am no longer able to live on my own and I am living in Ohio with my mother and stepfather. My youngest child, my son, Kaleb, lives here too. I had to transfer him from his school in West Virginia (our hometown) to the new school in Ohio in November. My husband is a coal miner in West Virginia and he is still there working 7 days a week. Since my illness, he has had to pick up the slack on everything...including the bills. My two older children (both girls) are in college full-time and live on their own. I would love it if they were able to help me, but I can't ask them to give up their lives. I am thankful for my mother and her ability to still care for me. I always thought I would be the one to help take care of her, and here we are....not at all what we expected. I have been evaluated at the Cleveland Clinic and UPMC in Pittsburgh for a double lung transplant, however, some other health problems are keeping me from being listed. Also, I have learned I have a high "antibody" count, which means a compatible match would be much harder for me than most other people. I also have a heart defect that has been detected now. So far I have been told my heart is not strong enough for a lung transplant and my lungs are not strong enough for a heart operation. I have had my rounds of steroids and Imuran, but there were no changes in my condition. I am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland Clinic on January 9th and will, hopefully, have more definitive results of all of the testing. My BMI is also a hinderance. Since I am overweight, and unable to exercise, I watch what I eat, but do not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed 185 about one year ago - and the weight came on while on the steroids. I have been told they will not do the lung transplant until my BMI is below 30. I am at 39 now. I have had 2 hospitalizations this year for pneumonia and I am sick now. I know if I go to the hopsital I will be admitted, so I am trying to self-treat at home. I have my nebulizer fired up every 4 hours. I guess the reason I am here is because I am so sad. I feel terrible, but I thank God for every day that I have here. I have been blessed to have a wonderful family. My children are having a hard time dealing with me being sick and the inevitable downward spiral I seem to be on. Thank you for reading my post. I hope to make friends and receive support from this group. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 Tina...........I'm afraid that I read your post and immediately hit the "reply" button.........without really knowing what to say. I guess I would say that I'm glad that you found your way to our (your) group. I'm sorry that it was necessary to find us. Your sadness comes through the wires.....know that you are not alone !!!! As far as your pneumonia is concerned, while I understand your not wanting to be admitted, I certainly hope you have a way to get some antibiotics. Levaquin is one you'll read about here.......miracle stuff, for me at least. I mention this because I've finally learned to attack the pneumonias and other ailments, if for no other reason, because of the direct relationship between the way I feel physical to the way I feel emotionally. If I'm not sick, I can handle this load that has been cast upon all of us. If I am sick.....well, let's just say that those days are better forgotten. I feel a strength in your writing, which is a wonderful attribute. You don't say what you are nebulizing.........I hope you get to feeling better SOON. I'll save my speech about anti-depressants until then. Hopefully, someone more eloquent than I can go there. Tina, I am glad you decided to share with us. YOU ARE NOT ALONE.!!! jim IPF 05 alaska tjnikita wrote: Hi everyone. My name is Tina. I have been reading your posts for a while and finally got up the nerve to join in. I was diagnosed with IPF in April, 2007, by open lung biopsy. I am 41 years old. I have 3 children, 22, 18, and 5. My disease has been labeled as "fast progressing" and, therefore, I am no longer able to live on my own and I am living in Ohio with my mother and stepfather. My youngest child, my son, Kaleb, lives here too. I had to transfer him from his school in West Virginia (our hometown) to the new school in Ohio in November. My husband is a coal miner in West Virginia and he is still there working 7 days a week. Since my illness, he has had to pick up the slack on everything...including the bills. My two older children (both girls) are in college full-time and live on their own. I would love it if they were able to help me, but I can't ask them to give up their lives. I am thankful for my mother and her ability to still care for me. I always thought I would be the one to help take care of her, and here we are....not at all what we expected. I have been evaluated at the Cleveland Clinic and UPMC in Pittsburgh for a double lung transplant, however, some other health problems are keeping me from being listed. Also, I have learned I have a high "antibody" count, which means a compatible match would be much harder for me than most other people. I also have a heart defect that has been detected now. So far I have been told my heart is not strong enough for a lung transplant and my lungs are not strong enough for a heart operation. I have had my rounds of steroids and Imuran, but there were no changes in my condition. I am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland Clinic on January 9th and will, hopefully, have more definitive results of all of the testing. My BMI is also a hinderance. Since I am overweight, and unable to exercise, I watch what I eat, but do not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed 185 about one year ago - and the weight came on while on the steroids. I have been told they will not do the lung transplant until my BMI is below 30. I am at 39 now. I have had 2 hospitalizations this year for pneumonia and I am sick now. I know if I go to the hopsital I will be admitted, so I am trying to self-treat at home. I have my nebulizer fired up every 4 hours. I guess the reason I am here is because I am so sad. I feel terrible, but I thank God for every day that I have here. I have been blessed to have a wonderful family. My children are having a hard time dealing with me being sick and the inevitable downward spiral I seem to be on. Thank you for reading my post. I hope to make friends and receive support from this group. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 no tina, i haven't been evaluated for a lung transplant yet. i just quit smoking.....4 days and no cigerettes and i too have to lose weight....i weigh 346 lbs....so i have more to lose than you. no one will discuss it with me as yet... i go see my new pulmo dr on friday and he's down at osu hospital in columbus....i'll have to look on the map for new london....hope it's not far! > > > > > > Hi everyone. My name is Tina. I have been reading your posts for > a > > > while and finally got up the nerve to join in. I was diagnosed > with > > > IPF in April, 2007, by open lung biopsy. I am 41 years old. I > have > > > 3 children, 22, 18, and 5. My disease has been labeled as " fast > > > progressing " and, therefore, I am no longer able to live on my > own > > > and I am living in Ohio with my mother and stepfather. My > youngest > > > child, my son, Kaleb, lives here too. I had to transfer him from > > > his school in West Virginia (our hometown) to the new school in > Ohio > > > in November. My husband is a coal miner in West Virginia and he > is > > > still there working 7 days a week. Since my illness, he has had > to > > > pick up the slack on everything...including the bills. My two > older > > > children (both girls) are in college full-time and live on their > > > own. I would love it if they were able to help me, but I can't > ask > > > them to give up their lives. I am thankful for my mother and her > > > ability to still care for me. I always thought I would be the one > > > to help take care of her, and here we are....not at all what we > > > expected. I have been evaluated at the Cleveland Clinic and UPMC > in > > > Pittsburgh for a double lung transplant, however, some other > health > > > problems are keeping me from being listed. Also, I have learned I > > > have a high " antibody " count, which means a compatible match > would > > > be much harder for me than most other people. I also have a heart > > > defect that has been detected now. So far I have been told my > heart > > > is not strong enough for a lung transplant and my lungs are not > > > strong enough for a heart operation. I have had my rounds of > > > steroids and Imuran, but there were no changes in my condition. I > > > am, of course, on oxygen full-time at 4 ltr. I go back to > Cleveland > > > Clinic on January 9th and will, hopefully, have more definitive > > > results of all of the testing. My BMI is also a hinderance. Since > > > I am overweight, and unable to exercise, I watch what I eat, but > do > > > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > > > 185 about one year ago - and the weight came on while on the > > > steroids. I have been told they will not do the lung transplant > > > until my BMI is below 30. I am at 39 now. I have had 2 > > > hospitalizations this year for pneumonia and I am sick now. I > know > > > if I go to the hopsital I will be admitted, so I am trying to > self- > > > treat at home. I have my nebulizer fired up every 4 hours. I > guess > > > the reason I am here is because I am so sad. I feel terrible, > but I > > > thank God for every day that I have here. I have been blessed to > > > have a wonderful family. My children are having a hard time > dealing > > > with me being sick and the inevitable downward spiral I seem to > be > > > on. Thank you for reading my post. I hope to make friends and > > > receive support from this group. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 no tina, i haven't been evaluated for a lung transplant yet. i just quit smoking.....4 days and no cigerettes and i too have to lose weight....i weigh 346 lbs....so i have more to lose than you. no one will discuss it with me as yet... i go see my new pulmo dr on friday and he's down at osu hospital in columbus....i'll have to look on the map for new london....hope it's not far! > > > > > > Hi everyone. My name is Tina. I have been reading your posts for > a > > > while and finally got up the nerve to join in. I was diagnosed > with > > > IPF in April, 2007, by open lung biopsy. I am 41 years old. I > have > > > 3 children, 22, 18, and 5. My disease has been labeled as " fast > > > progressing " and, therefore, I am no longer able to live on my > own > > > and I am living in Ohio with my mother and stepfather. My > youngest > > > child, my son, Kaleb, lives here too. I had to transfer him from > > > his school in West Virginia (our hometown) to the new school in > Ohio > > > in November. My husband is a coal miner in West Virginia and he > is > > > still there working 7 days a week. Since my illness, he has had > to > > > pick up the slack on everything...including the bills. My two > older > > > children (both girls) are in college full-time and live on their > > > own. I would love it if they were able to help me, but I can't > ask > > > them to give up their lives. I am thankful for my mother and her > > > ability to still care for me. I always thought I would be the one > > > to help take care of her, and here we are....not at all what we > > > expected. I have been evaluated at the Cleveland Clinic and UPMC > in > > > Pittsburgh for a double lung transplant, however, some other > health > > > problems are keeping me from being listed. Also, I have learned I > > > have a high " antibody " count, which means a compatible match > would > > > be much harder for me than most other people. I also have a heart > > > defect that has been detected now. So far I have been told my > heart > > > is not strong enough for a lung transplant and my lungs are not > > > strong enough for a heart operation. I have had my rounds of > > > steroids and Imuran, but there were no changes in my condition. I > > > am, of course, on oxygen full-time at 4 ltr. I go back to > Cleveland > > > Clinic on January 9th and will, hopefully, have more definitive > > > results of all of the testing. My BMI is also a hinderance. Since > > > I am overweight, and unable to exercise, I watch what I eat, but > do > > > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > > > 185 about one year ago - and the weight came on while on the > > > steroids. I have been told they will not do the lung transplant > > > until my BMI is below 30. I am at 39 now. I have had 2 > > > hospitalizations this year for pneumonia and I am sick now. I > know > > > if I go to the hopsital I will be admitted, so I am trying to > self- > > > treat at home. I have my nebulizer fired up every 4 hours. I > guess > > > the reason I am here is because I am so sad. I feel terrible, > but I > > > thank God for every day that I have here. I have been blessed to > > > have a wonderful family. My children are having a hard time > dealing > > > with me being sick and the inevitable downward spiral I seem to > be > > > on. Thank you for reading my post. I hope to make friends and > > > receive support from this group. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 Tony...........Well said.................jimtony wrote: Hang in there Tina- I was DX in 1995 and at one time was told I had 6 months-well I am still here and the doc is worm food-Try to hang on to everything in your life that gives you joy-Most of all your sense of humor-I know it's toough but hell so is every day life-I have had times I felt like I was on top and times on the bottom-but when your in the valley that is where the flowers grow-You will get lots of thoughts of how and what you should do- so pick and choose wisely grasshopper-It is all according to your will to keep fighting-Me I laugh about it and crack jokes but thats how I cope with- No way am I gonna die and some man marry up with my wife and spend my insurance money lol-Just when you feel it building up in you and you feel like your gonna bust or suffacate bet it out, don't hold it in scream , hollar kick the dog do something any how thats my two cents-Good luck in journey and God BlessIn Breathe-Support , "tjnikita" wrote:>> Hi everyone. My name is Tina. I have been reading your posts for a > while and finally got up the nerve to join in. I was diagnosed with > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > 3 children, 22, 18, and 5. My disease has been labeled as "fast > progressing" and, therefore, I am no longer able to live on my own > and I am living in Ohio with my mother and stepfather. My youngest > child, my son, Kaleb, lives here too. I had to transfer him from > his school in West Virginia (our hometown) to the new school in Ohio > in November. My husband is a coal miner in West Virginia and he is > still there working 7 days a week. Since my illness, he has had to > pick up the slack on everything...including the bills. My two older > children (both girls) are in college full-time and live on their > own. I would love it if they were able to help me, but I can't ask > them to give up their lives. I am thankful for my mother and her > ability to still care for me. I always thought I would be the one > to help take care of her, and here we are....not at all what we > expected. I have been evaluated at the Cleveland Clinic and UPMC in > Pittsburgh for a double lung transplant, however, some other health > problems are keeping me from being listed. Also, I have learned I > have a high "antibody" count, which means a compatible match would > be much harder for me than most other people. I also have a heart > defect that has been detected now. So far I have been told my heart > is not strong enough for a lung transplant and my lungs are not > strong enough for a heart operation. I have had my rounds of > steroids and Imuran, but there were no changes in my condition. I > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > Clinic on January 9th and will, hopefully, have more definitive > results of all of the testing. My BMI is also a hinderance. Since > I am overweight, and unable to exercise, I watch what I eat, but do > not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed > 185 about one year ago - and the weight came on while on the > steroids. I have been told they will not do the lung transplant > until my BMI is below 30. I am at 39 now. I have had 2 > hospitalizations this year for pneumonia and I am sick now. I know > if I go to the hopsital I will be admitted, so I am trying to self-> treat at home. I have my nebulizer fired up every 4 hours. I guess > the reason I am here is because I am so sad. I feel terrible, but I > thank God for every day that I have here. I have been blessed to > have a wonderful family. My children are having a hard time dealing > with me being sick and the inevitable downward spiral I seem to be > on. Thank you for reading my post. I hope to make friends and > receive support from this group.> Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 Tony...........Well said.................jimtony wrote: Hang in there Tina- I was DX in 1995 and at one time was told I had 6 months-well I am still here and the doc is worm food-Try to hang on to everything in your life that gives you joy-Most of all your sense of humor-I know it's toough but hell so is every day life-I have had times I felt like I was on top and times on the bottom-but when your in the valley that is where the flowers grow-You will get lots of thoughts of how and what you should do- so pick and choose wisely grasshopper-It is all according to your will to keep fighting-Me I laugh about it and crack jokes but thats how I cope with- No way am I gonna die and some man marry up with my wife and spend my insurance money lol-Just when you feel it building up in you and you feel like your gonna bust or suffacate bet it out, don't hold it in scream , hollar kick the dog do something any how thats my two cents-Good luck in journey and God BlessIn Breathe-Support , "tjnikita" wrote:>> Hi everyone. My name is Tina. I have been reading your posts for a > while and finally got up the nerve to join in. I was diagnosed with > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > 3 children, 22, 18, and 5. My disease has been labeled as "fast > progressing" and, therefore, I am no longer able to live on my own > and I am living in Ohio with my mother and stepfather. My youngest > child, my son, Kaleb, lives here too. I had to transfer him from > his school in West Virginia (our hometown) to the new school in Ohio > in November. My husband is a coal miner in West Virginia and he is > still there working 7 days a week. Since my illness, he has had to > pick up the slack on everything...including the bills. My two older > children (both girls) are in college full-time and live on their > own. I would love it if they were able to help me, but I can't ask > them to give up their lives. I am thankful for my mother and her > ability to still care for me. I always thought I would be the one > to help take care of her, and here we are....not at all what we > expected. I have been evaluated at the Cleveland Clinic and UPMC in > Pittsburgh for a double lung transplant, however, some other health > problems are keeping me from being listed. Also, I have learned I > have a high "antibody" count, which means a compatible match would > be much harder for me than most other people. I also have a heart > defect that has been detected now. So far I have been told my heart > is not strong enough for a lung transplant and my lungs are not > strong enough for a heart operation. I have had my rounds of > steroids and Imuran, but there were no changes in my condition. I > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > Clinic on January 9th and will, hopefully, have more definitive > results of all of the testing. My BMI is also a hinderance. Since > I am overweight, and unable to exercise, I watch what I eat, but do > not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed > 185 about one year ago - and the weight came on while on the > steroids. I have been told they will not do the lung transplant > until my BMI is below 30. I am at 39 now. I have had 2 > hospitalizations this year for pneumonia and I am sick now. I know > if I go to the hopsital I will be admitted, so I am trying to self-> treat at home. I have my nebulizer fired up every 4 hours. I guess > the reason I am here is because I am so sad. I feel terrible, but I > thank God for every day that I have here. I have been blessed to > have a wonderful family. My children are having a hard time dealing > with me being sick and the inevitable downward spiral I seem to be > on. Thank you for reading my post. I hope to make friends and > receive support from this group.> Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 You have every reason to be sad and need to vent and we're so glad you've decided to do so with us. The combination of issues you're facing right now can be overwhelming. At 4 liters is your oxygen level maintaining ok? I ask because if it is you can still enjoy lots of things at 4 liters and, if it isn't, you need to look toward an increased level. Now, I know your multiple conditions really complicate things. Make sure when you return to Cleveland Clinic or anywhere you're armed with questions and issues you want to discuss. Question everything until you're comfortable with the answers. It seems you have two goals and both need to be addressed. The first is a better quality of living now and each day forward. Often doctors think of the disease and not the humanity, not ways of making your life more enjoyable. The other is the possibility of heart surgery or a lung transplant. However, don't get so bogged down in those that you do miss what's possible today. Now, let me just give you an example of an area I would delve into with the doctors and at least ask about. Prednisone. How long have you been on it? Has it helped? What side effects are you experiencing. Are they keeping the dosage constant or reducing it? Would you perhaps be having less problems with illnesses and even pneumonia without it or on a reduced dosage. Obviously, its working against your weight goals. This like every other topic is one to discuss with them until you're comfortable making or being part of a decision. Sometimes they act like the decision is obvious or its theirs. If you look on here and at a poll we recently did, people have a broad range of reactions and decisions on prednisone. (Sorry I assumed the steroid was prednisone but it may be another, still the same points). Please don't try too much self treating. Also, while downward spirals are possible, it seems to me you're dealing more with a complication of multiple issues right now. The cardiologists and pulmonologists must get together and then there are decisions on which to treat first or how to deal with the heart and lung issues. Are they related? For instance, is any of your heart condition a result of the IPF? Insist of some honest and direct answers on what you can possibly do to get to the point of qualifying for a transplant, what kind of candidate do they see you being? If its possible and something you really want then tell them thats the goal and you want everything aimed toward that. If they tell you you're not a candidate then insist on getting everything aimed toward maximizing your quality of life. Either way, find a way to enjoy your family. Every day is precious. Its just those of us with IPF, know it even more. As you take control and ask your questions and cover what you need to know with the doctors you'll feel more empowered. If one doctor doesn't respond in the way you feel he should, then get another. You're one of many patients to them. To you, you're the only one. Also, never assume anyone knows all that much. I hear predictions of lifespan and then words like " fast progressing. " Who knows how long any of us have had it. We may know how its progressed recently, but who knows tomorrow. Don't let predictions or words rule you. But do whatever you do need to in order to protect your health and make the most of things. Are you avoiding germs, sick people (including your own child) at all costs? Again, we're so glad to have you here and feel free to vent, complain, scream, yell, or just say " hello " . Ask anything you want. And say anything you want. > > Hi everyone. My name is Tina. I have been reading your posts for a > while and finally got up the nerve to join in. I was diagnosed with > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > 3 children, 22, 18, and 5. My disease has been labeled as " fast > progressing " and, therefore, I am no longer able to live on my own > and I am living in Ohio with my mother and stepfather. My youngest > child, my son, Kaleb, lives here too. I had to transfer him from > his school in West Virginia (our hometown) to the new school in Ohio > in November. My husband is a coal miner in West Virginia and he is > still there working 7 days a week. Since my illness, he has had to > pick up the slack on everything...including the bills. My two older > children (both girls) are in college full-time and live on their > own. I would love it if they were able to help me, but I can't ask > them to give up their lives. I am thankful for my mother and her > ability to still care for me. I always thought I would be the one > to help take care of her, and here we are....not at all what we > expected. I have been evaluated at the Cleveland Clinic and UPMC in > Pittsburgh for a double lung transplant, however, some other health > problems are keeping me from being listed. Also, I have learned I > have a high " antibody " count, which means a compatible match would > be much harder for me than most other people. I also have a heart > defect that has been detected now. So far I have been told my heart > is not strong enough for a lung transplant and my lungs are not > strong enough for a heart operation. I have had my rounds of > steroids and Imuran, but there were no changes in my condition. I > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > Clinic on January 9th and will, hopefully, have more definitive > results of all of the testing. My BMI is also a hinderance. Since > I am overweight, and unable to exercise, I watch what I eat, but do > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > 185 about one year ago - and the weight came on while on the > steroids. I have been told they will not do the lung transplant > until my BMI is below 30. I am at 39 now. I have had 2 > hospitalizations this year for pneumonia and I am sick now. I know > if I go to the hopsital I will be admitted, so I am trying to self- > treat at home. I have my nebulizer fired up every 4 hours. I guess > the reason I am here is because I am so sad. I feel terrible, but I > thank God for every day that I have here. I have been blessed to > have a wonderful family. My children are having a hard time dealing > with me being sick and the inevitable downward spiral I seem to be > on. Thank you for reading my post. I hope to make friends and > receive support from this group. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 26, 2007 Report Share Posted December 26, 2007 You have every reason to be sad and need to vent and we're so glad you've decided to do so with us. The combination of issues you're facing right now can be overwhelming. At 4 liters is your oxygen level maintaining ok? I ask because if it is you can still enjoy lots of things at 4 liters and, if it isn't, you need to look toward an increased level. Now, I know your multiple conditions really complicate things. Make sure when you return to Cleveland Clinic or anywhere you're armed with questions and issues you want to discuss. Question everything until you're comfortable with the answers. It seems you have two goals and both need to be addressed. The first is a better quality of living now and each day forward. Often doctors think of the disease and not the humanity, not ways of making your life more enjoyable. The other is the possibility of heart surgery or a lung transplant. However, don't get so bogged down in those that you do miss what's possible today. Now, let me just give you an example of an area I would delve into with the doctors and at least ask about. Prednisone. How long have you been on it? Has it helped? What side effects are you experiencing. Are they keeping the dosage constant or reducing it? Would you perhaps be having less problems with illnesses and even pneumonia without it or on a reduced dosage. Obviously, its working against your weight goals. This like every other topic is one to discuss with them until you're comfortable making or being part of a decision. Sometimes they act like the decision is obvious or its theirs. If you look on here and at a poll we recently did, people have a broad range of reactions and decisions on prednisone. (Sorry I assumed the steroid was prednisone but it may be another, still the same points). Please don't try too much self treating. Also, while downward spirals are possible, it seems to me you're dealing more with a complication of multiple issues right now. The cardiologists and pulmonologists must get together and then there are decisions on which to treat first or how to deal with the heart and lung issues. Are they related? For instance, is any of your heart condition a result of the IPF? Insist of some honest and direct answers on what you can possibly do to get to the point of qualifying for a transplant, what kind of candidate do they see you being? If its possible and something you really want then tell them thats the goal and you want everything aimed toward that. If they tell you you're not a candidate then insist on getting everything aimed toward maximizing your quality of life. Either way, find a way to enjoy your family. Every day is precious. Its just those of us with IPF, know it even more. As you take control and ask your questions and cover what you need to know with the doctors you'll feel more empowered. If one doctor doesn't respond in the way you feel he should, then get another. You're one of many patients to them. To you, you're the only one. Also, never assume anyone knows all that much. I hear predictions of lifespan and then words like " fast progressing. " Who knows how long any of us have had it. We may know how its progressed recently, but who knows tomorrow. Don't let predictions or words rule you. But do whatever you do need to in order to protect your health and make the most of things. Are you avoiding germs, sick people (including your own child) at all costs? Again, we're so glad to have you here and feel free to vent, complain, scream, yell, or just say " hello " . Ask anything you want. And say anything you want. > > Hi everyone. My name is Tina. I have been reading your posts for a > while and finally got up the nerve to join in. I was diagnosed with > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > 3 children, 22, 18, and 5. My disease has been labeled as " fast > progressing " and, therefore, I am no longer able to live on my own > and I am living in Ohio with my mother and stepfather. My youngest > child, my son, Kaleb, lives here too. I had to transfer him from > his school in West Virginia (our hometown) to the new school in Ohio > in November. My husband is a coal miner in West Virginia and he is > still there working 7 days a week. Since my illness, he has had to > pick up the slack on everything...including the bills. My two older > children (both girls) are in college full-time and live on their > own. I would love it if they were able to help me, but I can't ask > them to give up their lives. I am thankful for my mother and her > ability to still care for me. I always thought I would be the one > to help take care of her, and here we are....not at all what we > expected. I have been evaluated at the Cleveland Clinic and UPMC in > Pittsburgh for a double lung transplant, however, some other health > problems are keeping me from being listed. Also, I have learned I > have a high " antibody " count, which means a compatible match would > be much harder for me than most other people. I also have a heart > defect that has been detected now. So far I have been told my heart > is not strong enough for a lung transplant and my lungs are not > strong enough for a heart operation. I have had my rounds of > steroids and Imuran, but there were no changes in my condition. I > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > Clinic on January 9th and will, hopefully, have more definitive > results of all of the testing. My BMI is also a hinderance. Since > I am overweight, and unable to exercise, I watch what I eat, but do > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > 185 about one year ago - and the weight came on while on the > steroids. I have been told they will not do the lung transplant > until my BMI is below 30. I am at 39 now. I have had 2 > hospitalizations this year for pneumonia and I am sick now. I know > if I go to the hopsital I will be admitted, so I am trying to self- > treat at home. I have my nebulizer fired up every 4 hours. I guess > the reason I am here is because I am so sad. I feel terrible, but I > thank God for every day that I have here. I have been blessed to > have a wonderful family. My children are having a hard time dealing > with me being sick and the inevitable downward spiral I seem to be > on. Thank you for reading my post. I hope to make friends and > receive support from this group. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 Tina where in ohio do you live? I live in canton there are few of us here in ohio maybe we coud get together. diana canton nsip 2002tjnikita wrote: Hi everyone. My name is Tina. I have been reading your posts for a while and finally got up the nerve to join in. I was diagnosed with IPF in April, 2007, by open lung biopsy. I am 41 years old. I have 3 children, 22, 18, and 5. My disease has been labeled as "fast progressing" and, therefore, I am no longer able to live on my own and I am living in Ohio with my mother and stepfather. My youngest child, my son, Kaleb, lives here too. I had to transfer him from his school in West Virginia (our hometown) to the new school in Ohio in November. My husband is a coal miner in West Virginia and he is still there working 7 days a week. Since my illness, he has had to pick up the slack on everything...including the bills. My two older children (both girls) are in college full-time and live on their own. I would love it if they were able to help me, but I can't ask them to give up their lives. I am thankful for my mother and her ability to still care for me. I always thought I would be the one to help take care of her, and here we are....not at all what we expected. I have been evaluated at the Cleveland Clinic and UPMC in Pittsburgh for a double lung transplant, however, some other health problems are keeping me from being listed. Also, I have learned I have a high "antibody" count, which means a compatible match would be much harder for me than most other people. I also have a heart defect that has been detected now. So far I have been told my heart is not strong enough for a lung transplant and my lungs are not strong enough for a heart operation. I have had my rounds of steroids and Imuran, but there were no changes in my condition. I am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland Clinic on January 9th and will, hopefully, have more definitive results of all of the testing. My BMI is also a hinderance. Since I am overweight, and unable to exercise, I watch what I eat, but do not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed 185 about one year ago - and the weight came on while on the steroids. I have been told they will not do the lung transplant until my BMI is below 30. I am at 39 now. I have had 2 hospitalizations this year for pneumonia and I am sick now. I know if I go to the hopsital I will be admitted, so I am trying to self-treat at home. I have my nebulizer fired up every 4 hours. I guess the reason I am here is because I am so sad. I feel terrible, but I thank God for every day that I have here. I have been blessed to have a wonderful family. My children are having a hard time dealing with me being sick and the inevitable downward spiral I seem to be on. Thank you for reading my post. I hope to make friends and receive support from this group. Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 diana, my husbands aunt lives in canton! she's a widow now, her husband used to be a minister. don't ask what her last name is cause i can't remember! you would be surprised how many are here in ohio....i met one at my pulmo rehab class....she wasn't doing to good...but she had a great personality....we would tell jokes and had each other and everyone else there laughing!!!!! sometimes you just have to laugh....or all you want to do is cry....so nice meeting another buckeye!! Hi everyone. My name is Tina. I have been reading your posts for a > while and finally got up the nerve to join in. I was diagnosed with > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > 3 children, 22, 18, and 5. My disease has been labeled as " fast > progressing " and, therefore, I am no longer able to live on my own > and I am living in Ohio with my mother and stepfather. My youngest > child, my son, Kaleb, lives here too. I had to transfer him from > his school in West Virginia (our hometown) to the new school in Ohio > in November. My husband is a coal miner in West Virginia and he is > still there working 7 days a week. Since my illness, he has had to > pick up the slack on everything...including the bills. My two older > children (both girls) are in college full-time and live on their > own. I would love it if they were able to help me, but I can't ask > them to give up their lives. I am thankful for my mother and her > ability to still care for me. I always thought I would be the one > to help take care of her, and here we are....not at all what we > expected. I have been evaluated at the Cleveland Clinic and UPMC in > Pittsburgh for a double lung transplant, however, some other health > problems are keeping me from being listed. Also, I have learned I > have a high " antibody " count, which means a compatible match would > be much harder for me than most other people. I also have a heart > defect that has been detected now. So far I have been told my heart > is not strong enough for a lung transplant and my lungs are not > strong enough for a heart operation. I have had my rounds of > steroids and Imuran, but there were no changes in my condition. I > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > Clinic on January 9th and will, hopefully, have more definitive > results of all of the testing. My BMI is also a hinderance. Since > I am overweight, and unable to exercise, I watch what I eat, but do > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > 185 about one year ago - and the weight came on while on the > steroids. I have been told they will not do the lung transplant > until my BMI is below 30. I am at 39 now. I have had 2 > hospitalizations this year for pneumonia and I am sick now. I know > if I go to the hopsital I will be admitted, so I am trying to self- > treat at home. I have my nebulizer fired up every 4 hours. I guess > the reason I am here is because I am so sad. I feel terrible, but I > thank God for every day that I have here. I have been blessed to > have a wonderful family. My children are having a hard time dealing > with me being sick and the inevitable downward spiral I seem to be > on. Thank you for reading my post. I hope to make friends and > receive support from this group. > > > > > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 Tina where do you do rehab? I have lived in canton for 14 yrs qnd moved to mayland was there for 24 yrs pa 1 yr back to my roots again for the rst. I am living with my mother right now due to nsip and ssi. nsip raynauds 2002. Did you day you are going to the cleveland clinic?Tammy S wrote: diana, my husbands aunt lives in canton! she's a widow now, her husbandused to be a minister. don't ask what her last name is cause i can'tremember! you would be surprised how many are here in ohio....i met oneat my pulmo rehab class....she wasn't doing to good...but she had agreat personality....we would tell jokes and had each other and everyoneelse there laughing!!!!! sometimes you just have to laugh....or all youwant to do is cry....so nice meeting another buckeye!! Hi everyone. My name is Tina. I have beenreading your posts for a> while and finally got up the nerve to join in. I was diagnosed with> IPF in April, 2007, by open lung biopsy. I am 41 years old. I have> 3 children, 22, 18, and 5. My disease has been labeled as "fast> progressing" and, therefore, I am no longer able to live on my own> and I am living in Ohio with my mother and stepfather. My youngest> child, my son, Kaleb, lives here too. I had to transfer him from> his school in West Virginia (our hometown) to the new school in Ohio> in November. My husband is a coal miner in West Virginia and he is> still there working 7 days a week. Since my illness, he has had to> pick up the slack on everything...including the bills. My two older> children (both girls) are in college full-time and live on their> own. I would love it if they were able to help me, but I can't ask> them to give up their lives. I am thankful for my mother and her> ability to still care for me. I always thought I would be the one> to help take care of her, and here we are....not at all what we> expected. I have been evaluated at the Cleveland Clinic and UPMC in> Pittsburgh for a double lung transplant, however, some other health> problems are keeping me from being listed. Also, I have learned I> have a high "antibody" count, which means a compatible match would> be much harder for me than most other people. I also have a heart> defect that has been detected now. So far I have been told my heart> is not strong enough for a lung transplant and my lungs are not> strong enough for a heart operation. I have had my rounds of> steroids and Imuran, but there were no changes in my condition. I> am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland> Clinic on January 9th and will, hopefully, have more definitive> results of all of the testing. My BMI is also a hinderance. Since> I am overweight, and unable to exercise, I watch what I eat, but do> not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed> 185 about one year ago - and the weight came on while on the> steroids. I have been told they will not do the lung transplant> until my BMI is below 30. I am at 39 now. I have had 2> hospitalizations this year for pneumonia and I am sick now. I know> if I go to the hopsital I will be admitted, so I am trying to self-> treat at home. I have my nebulizer fired up every 4 hours. I guess> the reason I am here is because I am so sad. I feel terrible, but I> thank God for every day that I have here. I have been blessed to> have a wonderful family. My children are having a hard time dealing> with me being sick and the inevitable downward spiral I seem to be> on. Thank you for reading my post. I hope to make friends and> receive support from this group.>>>>>>> ---------------------------------> Never miss a thing. Make Yahoo your homepage.> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 I am in New London, Ohio. Hi everyone. My name is Tina. I have been reading your posts for a > while and finally got up the nerve to join in. I was diagnosed with > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > 3 children, 22, 18, and 5. My disease has been labeled as " fast > progressing " and, therefore, I am no longer able to live on my own > and I am living in Ohio with my mother and stepfather. My youngest > child, my son, Kaleb, lives here too. I had to transfer him from > his school in West Virginia (our hometown) to the new school in Ohio > in November. My husband is a coal miner in West Virginia and he is > still there working 7 days a week. Since my illness, he has had to > pick up the slack on everything...including the bills. My two older > children (both girls) are in college full-time and live on their > own. I would love it if they were able to help me, but I can't ask > them to give up their lives. I am thankful for my mother and her > ability to still care for me. I always thought I would be the one > to help take care of her, and here we are....not at all what we > expected. I have been evaluated at the Cleveland Clinic and UPMC in > Pittsburgh for a double lung transplant, however, some other health > problems are keeping me from being listed. Also, I have learned I > have a high " antibody " count, which means a compatible match would > be much harder for me than most other people. I also have a heart > defect that has been detected now. So far I have been told my heart > is not strong enough for a lung transplant and my lungs are not > strong enough for a heart operation. I have had my rounds of > steroids and Imuran, but there were no changes in my condition. I > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > Clinic on January 9th and will, hopefully, have more definitive > results of all of the testing. My BMI is also a hinderance. Since > I am overweight, and unable to exercise, I watch what I eat, but do > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > 185 about one year ago - and the weight came on while on the > steroids. I have been told they will not do the lung transplant > until my BMI is below 30. I am at 39 now. I have had 2 > hospitalizations this year for pneumonia and I am sick now. I know > if I go to the hopsital I will be admitted, so I am trying to self- > treat at home. I have my nebulizer fired up every 4 hours. I guess > the reason I am here is because I am so sad. I feel terrible, but I > thank God for every day that I have here. I have been blessed to > have a wonderful family. My children are having a hard time dealing > with me being sick and the inevitable downward spiral I seem to be > on. Thank you for reading my post. I hope to make friends and > receive support from this group. > > > > > > > --------------------------------- > Never miss a thing. Make Yahoo your homepage. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 27, 2007 Report Share Posted December 27, 2007 I am having trouble finding a place to do pulm rehab in this area. I am too far from Cleveland to go there every couple of days, but I found a new pulm dr. in Sandusky and I am hoping he can refer to rehab. I did rehab at WVU in town, WV, but since I moved to Ohio to live with my mom, I haven't found a new rehab place. Do you know of any? I live in New London (Ashland County), Ohio. I am doing my transplant evaluation at Cleveland Clinic and UPMC in Pittsburgh. I am central to both from this location. God Bless, Tina IPF/April 07/Ohio Hi everyone. My name is Tina. I have been > reading your posts for a > > while and finally got up the nerve to join in. I was diagnosed with > > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > > 3 children, 22, 18, and 5. My disease has been labeled as " fast > > progressing " and, therefore, I am no longer able to live on my own > > and I am living in Ohio with my mother and stepfather. My youngest > > child, my son, Kaleb, lives here too. I had to transfer him from > > his school in West Virginia (our hometown) to the new school in Ohio > > in November. My husband is a coal miner in West Virginia and he is > > still there working 7 days a week. Since my illness, he has had to > > pick up the slack on everything...including the bills. My two older > > children (both girls) are in college full-time and live on their > > own. I would love it if they were able to help me, but I can't ask > > them to give up their lives. I am thankful for my mother and her > > ability to still care for me. I always thought I would be the one > > to help take care of her, and here we are....not at all what we > > expected. I have been evaluated at the Cleveland Clinic and UPMC in > > Pittsburgh for a double lung transplant, however, some other health > > problems are keeping me from being listed. Also, I have learned I > > have a high " antibody " count, which means a compatible match would > > be much harder for me than most other people. I also have a heart > > defect that has been detected now. So far I have been told my heart > > is not strong enough for a lung transplant and my lungs are not > > strong enough for a heart operation. I have had my rounds of > > steroids and Imuran, but there were no changes in my condition. I > > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > > Clinic on January 9th and will, hopefully, have more definitive > > results of all of the testing. My BMI is also a hinderance. Since > > I am overweight, and unable to exercise, I watch what I eat, but do > > not seem to lose weight. I am 5'5 " and weigh 230 lbs. I weighed > > 185 about one year ago - and the weight came on while on the > > steroids. I have been told they will not do the lung transplant > > until my BMI is below 30. I am at 39 now. I have had 2 > > hospitalizations this year for pneumonia and I am sick now. I know > > if I go to the hopsital I will be admitted, so I am trying to self- > > treat at home. I have my nebulizer fired up every 4 hours. I guess > > the reason I am here is because I am so sad. I feel terrible, but I > > thank God for every day that I have here. I have been blessed to > > have a wonderful family. My children are having a hard time dealing > > with me being sick and the inevitable downward spiral I seem to be > > on. Thank you for reading my post. I hope to make friends and > > receive support from this group. > > > > > > > > > > > > > > --------------------------------- > > Never miss a thing. Make Yahoo your homepage. > > > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Hello Tina Welcome, but I'm sorry to see you here. I'm 38 and fairly new to this site. I also have a five year old of whom I witter on about rather alot. I have found here a wealth of knowledge and loads of advice, as well as being a friendly bunch. I look forward to reading your posts. Love Ze xx>> Hi everyone. My name is Tina. I have been reading your posts for a > while and finally got up the nerve to join in. I was diagnosed with > IPF in April, 2007, by open lung biopsy. I am 41 years old. I have > 3 children, 22, 18, and 5. My disease has been labeled as "fast > progressing" and, therefore, I am no longer able to live on my own > and I am living in Ohio with my mother and stepfather. My youngest > child, my son, Kaleb, lives here too. I had to transfer him from > his school in West Virginia (our hometown) to the new school in Ohio > in November. My husband is a coal miner in West Virginia and he is > still there working 7 days a week. Since my illness, he has had to > pick up the slack on everything...including the bills. My two older > children (both girls) are in college full-time and live on their > own. I would love it if they were able to help me, but I can't ask > them to give up their lives. I am thankful for my mother and her > ability to still care for me. I always thought I would be the one > to help take care of her, and here we are....not at all what we > expected. I have been evaluated at the Cleveland Clinic and UPMC in > Pittsburgh for a double lung transplant, however, some other health > problems are keeping me from being listed. Also, I have learned I > have a high "antibody" count, which means a compatible match would > be much harder for me than most other people. I also have a heart > defect that has been detected now. So far I have been told my heart > is not strong enough for a lung transplant and my lungs are not > strong enough for a heart operation. I have had my rounds of > steroids and Imuran, but there were no changes in my condition. I > am, of course, on oxygen full-time at 4 ltr. I go back to Cleveland > Clinic on January 9th and will, hopefully, have more definitive > results of all of the testing. My BMI is also a hinderance. Since > I am overweight, and unable to exercise, I watch what I eat, but do > not seem to lose weight. I am 5'5" and weigh 230 lbs. I weighed > 185 about one year ago - and the weight came on while on the > steroids. I have been told they will not do the lung transplant > until my BMI is below 30. I am at 39 now. I have had 2 > hospitalizations this year for pneumonia and I am sick now. I know > if I go to the hopsital I will be admitted, so I am trying to self-> treat at home. I have my nebulizer fired up every 4 hours. I guess > the reason I am here is because I am so sad. I feel terrible, but I > thank God for every day that I have here. I have been blessed to > have a wonderful family. My children are having a hard time dealing > with me being sick and the inevitable downward spiral I seem to be > on. Thank you for reading my post. I hope to make friends and > receive support from this group.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 28, 2007 Report Share Posted December 28, 2007 Tina, Do you get Social Security Disability? Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > Hi everyone. My name is Tina. I have been reading your posts > for > > a > > > while and finally got up the nerve to join in. I was diagnosed > > with > > > IPF in April, 2007, by open lung biopsy. I am 41 years old. I > > have > > > 3 children, 22, 18, and 5. My disease has been labeled as "fast > > > progressing" and, therefore, I am no longer able to live on my > own > > > and I am living in Ohio with my mother and stepfather. My > youngest > > > child, my son, Kaleb, lives here too. I had to transfer him > from > > > his school in West Virginia (our hometown) to the new school in > > Ohio > > > in November. My husband is a coal miner in West Virginia and he > is > > > still there working 7 days a week. Since my illness, he has had > to > > > pick up the slack on everything...including the bills. My two > > older > > > children (both girls) are in college full-time and live on their > > > own. I would love it if they were able to help me, but I can't > ask > > > them to give up their lives. I am thankful for my mother and her > > > ability to still care for me. I always thought I would be the > one > > > to help take care of her, and here we are....not at all what we > > > expected. I have been evaluated at the Cleveland Clinic and > UPMC > > in > > > Pittsburgh for a double lung transplant, however, some other > health > > > problems are keeping me from being listed. Also, I have learned > I > > > have a high "antibody" count, which means a compatible match > would > > > be much harder for me than most other people. I also have a > heart > > > defect that has been detected now. So far I have been told my > > heart > > > is not strong enough for a lung transplant and my lungs are not > > > strong enough for a heart operation. I have had my rounds of > > > steroids and Imuran, but there were no changes in my condition. > I > > > am, of course, on oxygen full-time at 4 ltr. I go back to > > Cleveland > > > Clinic on January 9th and will, hopefully, have more definitive > > > results of all of the testing. My BMI is also a hinderance. > Since > > > I am overweight, and unable to exercise, I watch what I eat, but > do > > > not seem to lose weight. I am 5'5" and weigh 230 lbs. I > weighed > > > 185 about one year ago - and the weight came on while on the > > > steroids. I have been told they will not do the lung transplant > > > until my BMI is below 30. I am at 39 now. I have had 2 > > > hospitalizations this year for pneumonia and I am sick now. I > know > > > if I go to the hopsital I will be admitted, so I am trying to > self-> > > treat at home. I have my nebulizer fired up every 4 hours. I > > guess > > > the reason I am here is because I am so sad. I feel terrible, > but > > I > > > thank God for every day that I have here. I have been blessed > to > > > have a wonderful family. My children are having a hard time > > dealing > > > with me being sick and the inevitable downward spiral I seem to > be > > > on. Thank you for reading my post. I hope to make friends and > > > receive support from this group.> > >> >> Quote Link to comment Share on other sites More sharing options...
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