Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Oh my goodness , you have already been through so much. I'm sad you are this type of board but you are in the best place you can be for information and support about your lung disease and other assorted stuff so many of us deal with. I'm sorry to hear of your children's disorders as well. As I said, you and your family have been through a lot. There are some here on the board who have the familial ILD. There is information on the home page where you can check out lots of things. You will get lots of answers . Stay with the board. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! 's Introduction Hi all,I am new to this group and just wanted to introduce myself. My nameis Breese. I am 40 yrs old and live in , TX. I am marriedto Kristy and we have two kids. Brittany is 17 and has Down Syndromeand Austin is 13 and has a seizure disorder. I was diagnosed withILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 anda Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had acomplication called Pneumomediastinum-air leaking from my lungs intomy chest/neck which lasted for four months. It went away for fourmonths and returned the day after Memorial Day. My uncle passed away a few years ago from PF and his father, mygrandfather, possibly died from PF according to some relatives. Myson also has asthma like myself.I am interested in getting some more facts about this disease and anyadvice you might have.Thanks in advance for your help, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Oh my goodness , you have already been through so much. I'm sad you are this type of board but you are in the best place you can be for information and support about your lung disease and other assorted stuff so many of us deal with. I'm sorry to hear of your children's disorders as well. As I said, you and your family have been through a lot. There are some here on the board who have the familial ILD. There is information on the home page where you can check out lots of things. You will get lots of answers . Stay with the board. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! 's Introduction Hi all,I am new to this group and just wanted to introduce myself. My nameis Breese. I am 40 yrs old and live in , TX. I am marriedto Kristy and we have two kids. Brittany is 17 and has Down Syndromeand Austin is 13 and has a seizure disorder. I was diagnosed withILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 anda Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had acomplication called Pneumomediastinum-air leaking from my lungs intomy chest/neck which lasted for four months. It went away for fourmonths and returned the day after Memorial Day. My uncle passed away a few years ago from PF and his father, mygrandfather, possibly died from PF according to some relatives. Myson also has asthma like myself.I am interested in getting some more facts about this disease and anyadvice you might have.Thanks in advance for your help, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Nice seeing you here. You going to check out the support group tonight? Everyone is a super nice guy. If anyone else has experienced the air leaking I know he'd appreciate hearing as I can discuss the PF all day but know nothing at all about air leaking except that I'm sure glad I don't have it. > > Hi all, > > I am new to this group and just wanted to introduce myself. My name > is Breese. I am 40 yrs old and live in , TX. I am married > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > and Austin is 13 and has a seizure disorder. I was diagnosed with > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > complication called Pneumomediastinum-air leaking from my lungs into > my chest/neck which lasted for four months. It went away for four > months and returned the day after Memorial Day. > > My uncle passed away a few years ago from PF and his father, my > grandfather, possibly died from PF according to some relatives. My > son also has asthma like myself. > > I am interested in getting some more facts about this disease and any > advice you might have. > > Thanks in advance for your help, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Nice seeing you here. You going to check out the support group tonight? Everyone is a super nice guy. If anyone else has experienced the air leaking I know he'd appreciate hearing as I can discuss the PF all day but know nothing at all about air leaking except that I'm sure glad I don't have it. > > Hi all, > > I am new to this group and just wanted to introduce myself. My name > is Breese. I am 40 yrs old and live in , TX. I am married > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > and Austin is 13 and has a seizure disorder. I was diagnosed with > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > complication called Pneumomediastinum-air leaking from my lungs into > my chest/neck which lasted for four months. It went away for four > months and returned the day after Memorial Day. > > My uncle passed away a few years ago from PF and his father, my > grandfather, possibly died from PF according to some relatives. My > son also has asthma like myself. > > I am interested in getting some more facts about this disease and any > advice you might have. > > Thanks in advance for your help, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Sher, Thanks for the encouragement. My wife said she didn't need her " 3rd kid " to come down with a medical condition. I told her that the Lord knows whom He can trust to take care of us. She is now working after 15 years being at home for us. So prayers for her are more desired than on my behalf. God bless, > > Oh my goodness , you have already been through so much. I'm sad you are this type of board but you are in the best place you can be for information and support about your lung disease and other assorted stuff so many of us deal with. > > I'm sorry to hear of your children's disorders as well. As I said, you and your family have been through a lot. > > There are some here on the board who have the familial ILD. There is information on the home page where you can check out lots of things. > > You will get lots of answers . > Stay with the board. > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums > Don't fret about tomorrow, God is already there! > > 's Introduction > > > Hi all, > > I am new to this group and just wanted to introduce myself. My name > is Breese. I am 40 yrs old and live in , TX. I am married > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > and Austin is 13 and has a seizure disorder. I was diagnosed with > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > complication called Pneumomediastinum-air leaking from my lungs into > my chest/neck which lasted for four months. It went away for four > months and returned the day after Memorial Day. > > My uncle passed away a few years ago from PF and his father, my > grandfather, possibly died from PF according to some relatives. My > son also has asthma like myself. > > I am interested in getting some more facts about this disease and any > advice you might have. > > Thanks in advance for your help, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Sher, Thanks for the encouragement. My wife said she didn't need her " 3rd kid " to come down with a medical condition. I told her that the Lord knows whom He can trust to take care of us. She is now working after 15 years being at home for us. So prayers for her are more desired than on my behalf. God bless, > > Oh my goodness , you have already been through so much. I'm sad you are this type of board but you are in the best place you can be for information and support about your lung disease and other assorted stuff so many of us deal with. > > I'm sorry to hear of your children's disorders as well. As I said, you and your family have been through a lot. > > There are some here on the board who have the familial ILD. There is information on the home page where you can check out lots of things. > > You will get lots of answers . > Stay with the board. > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums > Don't fret about tomorrow, God is already there! > > 's Introduction > > > Hi all, > > I am new to this group and just wanted to introduce myself. My name > is Breese. I am 40 yrs old and live in , TX. I am married > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > and Austin is 13 and has a seizure disorder. I was diagnosed with > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > complication called Pneumomediastinum-air leaking from my lungs into > my chest/neck which lasted for four months. It went away for four > months and returned the day after Memorial Day. > > My uncle passed away a few years ago from PF and his father, my > grandfather, possibly died from PF according to some relatives. My > son also has asthma like myself. > > I am interested in getting some more facts about this disease and any > advice you might have. > > Thanks in advance for your help, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Sher, Thanks for the encouragement. My wife said she didn't need her " 3rd kid " to come down with a medical condition. I told her that the Lord knows whom He can trust to take care of us. She is now working after 15 years being at home for us. So prayers for her are more desired than on my behalf. God bless, > > Oh my goodness , you have already been through so much. I'm sad you are this type of board but you are in the best place you can be for information and support about your lung disease and other assorted stuff so many of us deal with. > > I'm sorry to hear of your children's disorders as well. As I said, you and your family have been through a lot. > > There are some here on the board who have the familial ILD. There is information on the home page where you can check out lots of things. > > You will get lots of answers . > Stay with the board. > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums > Don't fret about tomorrow, God is already there! > > 's Introduction > > > Hi all, > > I am new to this group and just wanted to introduce myself. My name > is Breese. I am 40 yrs old and live in , TX. I am married > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > and Austin is 13 and has a seizure disorder. I was diagnosed with > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > complication called Pneumomediastinum-air leaking from my lungs into > my chest/neck which lasted for four months. It went away for four > months and returned the day after Memorial Day. > > My uncle passed away a few years ago from PF and his father, my > grandfather, possibly died from PF according to some relatives. My > son also has asthma like myself. > > I am interested in getting some more facts about this disease and any > advice you might have. > > Thanks in advance for your help, > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Bruce, I went to the support group in south Dallas. It is geared a bit toward COPD. They are going to do a little research and see if there is something closer and geared more toward PF. Everyone, I had the pleasure of meeting Bruce. He is definitely a good, genuine guy that I'm sure you all have figured him to be. It was amazing to learn that our illness timeframe, lung biopsy surgery timeframe, and other idiosyncrasies like going to an Italian restaurant and looking through the menu and ending up ordering Lasagna each time. When I told my wife that she couldn't believe it! Then I told her he requested no black olives on his salad...once again she was amazed. Then I told her he likes to eat before the lunch rush and now she wants DNA testing!!! Great to meet you Bruce! My wife wants to get together some time also. > > > > Hi all, > > > > I am new to this group and just wanted to introduce myself. My name > > is Breese. I am 40 yrs old and live in , TX. I am married > > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > > and Austin is 13 and has a seizure disorder. I was diagnosed with > > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > > complication called Pneumomediastinum-air leaking from my lungs into > > my chest/neck which lasted for four months. It went away for four > > months and returned the day after Memorial Day. > > > > My uncle passed away a few years ago from PF and his father, my > > grandfather, possibly died from PF according to some relatives. My > > son also has asthma like myself. > > > > I am interested in getting some more facts about this disease and any > > advice you might have. > > > > Thanks in advance for your help, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 , Good to meet you. We almost moved to Cedar Hill/Mansfield in 2004. We are definitely going to have to get a support group started here. I'd like to know where I'm at in the " scope of things " and doctors don't always communicate properly. Sometimes the info flows so much faster in support groups. We were in a Down Syndrome parent support group since Brittany was 2 months old so we know the value of these types of groups. God bless, > > > > > > Hi all, > > > > > > I am new to this group and just wanted to introduce myself. My name > > > is Breese. I am 40 yrs old and live in , TX. I am married > > > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > > > and Austin is 13 and has a seizure disorder. I was diagnosed with > > > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > > > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > > > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > > > complication called Pneumomediastinum- air leaking from my lungs into > > > my chest/neck which lasted for four months. It went away for four > > > months and returned the day after Memorial Day. > > > > > > My uncle passed away a few years ago from PF and his father, my > > > grandfather, possibly died from PF according to some relatives. My > > > son also has asthma like myself. > > > > > > I am interested in getting some more facts about this disease and any > > > advice you might have. > > > > > > Thanks in advance for your help, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 , Good to meet you. We almost moved to Cedar Hill/Mansfield in 2004. We are definitely going to have to get a support group started here. I'd like to know where I'm at in the " scope of things " and doctors don't always communicate properly. Sometimes the info flows so much faster in support groups. We were in a Down Syndrome parent support group since Brittany was 2 months old so we know the value of these types of groups. God bless, > > > > > > Hi all, > > > > > > I am new to this group and just wanted to introduce myself. My name > > > is Breese. I am 40 yrs old and live in , TX. I am married > > > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > > > and Austin is 13 and has a seizure disorder. I was diagnosed with > > > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > > > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > > > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > > > complication called Pneumomediastinum- air leaking from my lungs into > > > my chest/neck which lasted for four months. It went away for four > > > months and returned the day after Memorial Day. > > > > > > My uncle passed away a few years ago from PF and his father, my > > > grandfather, possibly died from PF according to some relatives. My > > > son also has asthma like myself. > > > > > > I am interested in getting some more facts about this disease and any > > > advice you might have. > > > > > > Thanks in advance for your help, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 , Good to meet you. We almost moved to Cedar Hill/Mansfield in 2004. We are definitely going to have to get a support group started here. I'd like to know where I'm at in the " scope of things " and doctors don't always communicate properly. Sometimes the info flows so much faster in support groups. We were in a Down Syndrome parent support group since Brittany was 2 months old so we know the value of these types of groups. God bless, > > > > > > Hi all, > > > > > > I am new to this group and just wanted to introduce myself. My name > > > is Breese. I am 40 yrs old and live in , TX. I am married > > > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > > > and Austin is 13 and has a seizure disorder. I was diagnosed with > > > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > > > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > > > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > > > complication called Pneumomediastinum- air leaking from my lungs into > > > my chest/neck which lasted for four months. It went away for four > > > months and returned the day after Memorial Day. > > > > > > My uncle passed away a few years ago from PF and his father, my > > > grandfather, possibly died from PF according to some relatives. My > > > son also has asthma like myself. > > > > > > I am interested in getting some more facts about this disease and any > > > advice you might have. > > > > > > Thanks in advance for your help, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Elise I know Gwynne was interested but that was pre-transplant. I was going to try to get one started but selfishly just couldn't see committing to it. I do know, although I haven't met, one other person in the area. I'm not any of those good things you all are spouting but thanks anyway. Glad your PFT's were good Elise and we still have to make lunch plans. I'm still in my challenge with MB and Lojack for the most traveling but also been fortunate to have met so many from here and hope to meet many more. I can say every one has been a special privilege and I've met from those not on oxygen to those at 10 lpm sitting and 15 lpm moving. > > > > > > Hi all, > > > > > > I am new to this group and just wanted to introduce myself. My name > > > is Breese. I am 40 yrs old and live in , TX. I am married > > > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > > > and Austin is 13 and has a seizure disorder. I was diagnosed with > > > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > > > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > > > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > > > complication called Pneumomediastinum- air leaking from my lungs into > > > my chest/neck which lasted for four months. It went away for four > > > months and returned the day after Memorial Day. > > > > > > My uncle passed away a few years ago from PF and his father, my > > > grandfather, possibly died from PF according to some relatives. My > > > son also has asthma like myself. > > > > > > I am interested in getting some more facts about this disease and any > > > advice you might have. > > > > > > Thanks in advance for your help, > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 ... I'm sure that is hard on the family too, to have mom working but we just do what we have to do. Lots of families are disrupted with this damn disease. Here on the board we understand when families adjust to different responsibilities from before. Are the kids able to pitch in with a few things? I'm thinking Brittany would enjoy helping and knowing she is really helping. Down Syndrome kids are so loving. I'm supposing Austin is on medication and could be of help too while mom works. There are quite a few members around the state of Texas. Go to the home page and click on the database and you can see where everyone lives. Not everyone adds their name but enough do that you can see a lot inTexas. I'm in Oregon. Very few of us out this way in the Pacific Northwest. You can click on Photos too and see what we look like. Nice to put a writing to a face. Maybe you could add pictures of you and your family. Keep on keepin' on. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! 's Introduction> > > Hi all,> > I am new to this group and just wanted to introduce myself. My name> is Breese. I am 40 yrs old and live in , TX. I am married> to Kristy and we have two kids. Brittany is 17 and has Down Syndrome> and Austin is 13 and has a seizure disorder. I was diagnosed with> ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and> a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a> complication called Pneumomediastinum-air leaking from my lungs into> my chest/neck which lasted for four months. It went away for four> months and returned the day after Memorial Day. > > My uncle passed away a few years ago from PF and his father, my> grandfather, possibly died from PF according to some relatives. My> son also has asthma like myself.> > I am interested in getting some more facts about this disease and any> advice you might have.> > Thanks in advance for your help,> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Now see there ... you already have a friend in Bruce. He is our information guru for sure. If he doesn't know he'll find it. MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Re: 's Introduction Bruce,I went to the support group in south Dallas. It is geared a bittoward COPD. They are going to do a little research and see if thereis something closer and geared more toward PF.Everyone,I had the pleasure of meeting Bruce. He is definitely a good, genuineguy that I'm sure you all have figured him to be. It was amazing tolearn that our illness timeframe, lung biopsy surgery timeframe, andother idiosyncrasies like going to an Italian restaurant and lookingthrough the menu and ending up ordering Lasagna each time. When Itold my wife that she couldn't believe it! Then I told her herequested no black olives on his salad...once again she was amazed. Then I told her he likes to eat before the lunch rush and now shewants DNA testing!!!Great to meet you Bruce!My wife wants to get together some time also.> >> > Hi all,> >> > I am new to this group and just wanted to introduce myself. My name> > is Breese. I am 40 yrs old and live in , TX. I am married> > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome> > and Austin is 13 and has a seizure disorder. I was diagnosed with> > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis.> > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and> > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a> > complication called Pneumomediastinum-air leaking from my lungs into> > my chest/neck which lasted for four months. It went away for four> > months and returned the day after Memorial Day.> >> > My uncle passed away a few years ago from PF and his father, my> > grandfather, possibly died from PF according to some relatives. My> > son also has asthma like myself.> >> > I am interested in getting some more facts about this disease and any> > advice you might have.> >> > Thanks in advance for your help,> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2008 Report Share Posted July 8, 2008 Sher, The kids are definitely helping out more. Brittany does the loading/unloading of the dishwasher and vaccuuming. Austin is on Depakote but that doesn't slow him down so he handles the mowing and my brother comes by and does the edging/weed whacker. I guess it is times like these that kids learn good values of life and hopefully decrease the selfishness. I posted my contact info...I'll have to get some photos together and post them soon. > > > > Oh my goodness , you have already been through so much. I'm sad > you are this type of board but you are in the best place you can be > for information and support about your lung disease and other assorted > stuff so many of us deal with. > > > > I'm sorry to hear of your children's disorders as well. As I said, > you and your family have been through a lot. > > > > There are some here on the board who have the familial ILD. There is > information on the home page where you can check out lots of things. > > > > You will get lots of answers . > > Stay with the board. > > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums > > Don't fret about tomorrow, God is already there! > > > > 's Introduction > > > > > > Hi all, > > > > I am new to this group and just wanted to introduce myself. My name > > is Breese. I am 40 yrs old and live in , TX. I am married > > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome > > and Austin is 13 and has a seizure disorder. I was diagnosed with > > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > > This started in April '07 and I had a Bronchoscopy on Sept 2, 2007 and > > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy I had a > > complication called Pneumomediastinum-air leaking from my lungs into > > my chest/neck which lasted for four months. It went away for four > > months and returned the day after Memorial Day. > > > > My uncle passed away a few years ago from PF and his father, my > > grandfather, possibly died from PF according to some relatives. My > > son also has asthma like myself. > > > > I am interested in getting some more facts about this disease and any > > advice you might have. > > > > Thanks in advance for your help, > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 , Welcome to the group. Like you, I have only recently been diagnosed and I too have a daughter with Down syndrome. My daughter Beth is 25 and lives with her mother in the Boston area. She was recently her to visit me for a couple of weeks and was really great about helping. Whenever we went out she was always concerned that I had filled my portable unit so that I wouldn’t run out of oxygen – I did once when we were out, just as we got home! She was great about carrying things up the stairs for me, as well as getting out of the car to run quick errands for me. Her mother and I were very involved with our local Down syndrome group, and again like you, the support that we got from the group is one of the reasons that I came here when I found out about this group. Steve aka…Knip Dx 9/07 confirmed via VATS 12/07 57 NH Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 9, 2008 Report Share Posted July 9, 2008 , You know, you being with your children more while your wife works may end up being a huge blessing. Sometimes a crisis and a forced change of lifestyle can really put what's important into perspective. I'm thinking you are a very involved dad and this will be a time to bond even more with your children. People may think I'm crazy, but I want my children to suffer some adversity in their lives so that they will learn some life lessons. Life is hard, and the sooner people learn that, the more equipped they will be along the path. Some of us have had to cope with what seems like more than our share, but I think that's all in God's plan, somehow. A great story I've heard recently is about a woman who has bone cancer. She teaches a women's Bible study and is so inspirational. She says she is so thankful she got the disease because it allows her to share her faith with many more people. She said it doesn't matter if she has five days, five months, or five years left, she's planning to celebrate every moment and count every blessing. She's bald and wears these cute wigs and never goes on about her problems or her pain. It's been hard accepting this illness, but good things can definitely come from the situation. Hang in there, ! Subject: Re: 's IntroductionTo: Breathe-Support Date: Tuesday, July 8, 2008, 9:12 PM Sher,The kids are definitely helping out more. Brittany does theloading/unloading of the dishwasher and vaccuuming. Austin is onDepakote but that doesn't slow him down so he handles the mowing andmy brother comes by and does the edging/weed whacker. I guess it istimes like these that kids learn good values of life and hopefullydecrease the selfishness.I posted my contact info...I'll have to get some photos together andpost them soon.> >> > Oh my goodness , you have already been through so much. I'm sad> you are this type of board but you are in the best place you can be> for information and support about your lung disease and other assorted> stuff so many of us deal with.> > > > I'm sorry to hear of your children's disorders as well. As I said,> you and your family have been through a lot.> > > > There are some here on the board who have the familial ILD. There is> information on the home page where you can check out lots of things.> > > > You will get lots of answers .> > Stay with the board.> > MamaSher, age 69. IPF 3-06, OR./ Nasturtiums> > Don't fret about tomorrow, God is already there!> > > > 's Introduction> > > > > > Hi all,> > > > I am new to this group and just wanted to introduce myself. My name> > is Breese. I am 40 yrs old and live in , TX. I am married> > to Kristy and we have two kids. Brittany is 17 and has Down Syndrome> > and Austin is 13 and has a seizure disorder. I was diagnosed with> > ILD-IPF, NSIP, Atrial Fibrillations, and possibly Dermatomyositis. > > This started in April '07 and I had a Bronchoscopy on Sept 2,2007 and> > a Thoroscopy-Lung Biopsy Sept 18, 2007. After the lung biopsy Ihad a> > complication called Pneumomediastinum- air leaking from my lungs into> > my chest/neck which lasted for four months. It went away for four> > months and returned the day after Memorial Day. > > > > My uncle passed away a few years ago from PF and his father, my> > grandfather, possibly died from PF according to some relatives. My> > son also has asthma like myself.> > > > I am interested in getting some more facts about this diseaseand any> > advice you might have.> > > > Thanks in advance for your help,> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2008 Report Share Posted July 10, 2008 Steve, Thanks for the welcome. Having a daughter with Down Syndrome has been a blessing. This Saturday is a Special Olympics Swim Meet. Each time I attend one I get a fresh perspective on life. When I look around and see some of the athletes with certain medical conditions I begin to think I don't have it so bad afterall...at least I can communicate what I'm experiencing with my doctors. > > , > > > > Welcome to the group. Like you, I have only recently been diagnosed and I > too have a daughter with Down syndrome. My daughter Beth is 25 and lives > with her mother in the Boston area. She was recently her to visit me for a > couple of weeks and was really great about helping. Whenever we went out > she was always concerned that I had filled my portable unit so that I > wouldn't run out of oxygen - I did once when we were out, just as we got > home! She was great about carrying things up the stairs for me, as well as > getting out of the car to run quick errands for me. Her mother and I were > very involved with our local Down syndrome group, and again like you, the > support that we got from the group is one of the reasons that I came here > when I found out about this group. > > > > Steve aka.Knip Dx 9/07 confirmed via VATS 12/07 > > 57 NH > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2008 Report Share Posted July 14, 2008 Another thing … If your daughter is getting Social Security Disability as my daughter has been, then once you are approved for SSDI, then she will get an additional payment each month based on your payment. From what I was told, she will get half of what you will get. Steve aka.Knip Dx 9/07 confirmed via VATS 12/07 57 NH Quote Link to comment Share on other sites More sharing options...
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