Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 I think that is wonderful karin........its great that you proved them wrong at every turn....... sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 When I was diagnosed at age six, the doctors told my parents all the things they thought I would not be able to do...participate in sports (I fenced in high school), walk very far (I regularly walked miles when I didn't have a car, and still do in nice weather), work full-time (I work full time in a school and have in the past worked as many as three jobs and gone to college part time), my lungs would deteriorate (they haven't since 1988, at least), and they certainly didn't expect me to have a full life expectancy. Since I can do all that other stuff that they didn't expect me to be able to do, I take with a very large grain of salt any life expectancies that I am quoted. Karin I fully understand how you feel about being around people who are sick.......I won't let anyone in my house who even looks like they don't feel good unless they live here......my kids are so great about screening thier friends health before bringing them home......I was also told that I would never get better...I might be able to stay the same instead of getting worse but I would never actually be better... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 When my daughter was diagnosed with b at the age of 15 she was told that her lungs would last her until she was 80 as long as she looks after them. I even got the doctor to repeat that as I was so relieved. However, it took years to stabilise the condition and for years she was having IVs every 6 - 8 weeks. She went into hospital in October 2001 and didn't have to go again for nearly 6 months at the end of April 2002. Since then, nearly a year later, she has not needed IVs. She coughed almost non-stop for nearly 5 1/2 years and now she barely coughs at all. Her lung functions were jaw-droppingly improved last autumn. She even - wait for it - loves walking (she's nearly 21 and was always a typical couch potato teenager). She finally can think about university. She's doing part time courses at the moment and is able to think about the possibility of a full time degree course next year. She's not 100% but two years ago even this wouldn't have seemed possible. So, although the doctors gave her a full life-expectancy they knew it would be a reduced quality life. It now seems as though even that prognosis is wrong. Here's praying..... Lynne > When I was diagnosed at age six, the doctors told my parents all the > things they thought I would not be able to do...participate in > sports (I fenced in high school), walk very far (I regularly walked > miles when I didn't have a car, and still do in nice weather), work > full-time (I work full time in a school and have in the past worked > as many as three jobs and gone to college part time), my lungs would > deteriorate (they haven't since 1988, at least), and they certainly > didn't expect me to have a full life expectancy. Since I can do all > that other stuff that they didn't expect me to be able to do, I take > with a very large grain of salt any life expectancies that I am > quoted. > > Karin Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Hi Lynn it is good to hear from you again. Prof Warner told us this week that if the Bronchiectasis was 's only problem then they would expect for him to be able to keep fairly well for decades. However the pre-existence of all his other isues makes that unlikely. We were given ten years from his heart surgery when that was his only problem he hsa outlived that already:-) Now we are just living by Grace and Faith, in the sure knowledge that his days are numbered by God alone. Much loveTina Hillier Mum to , 12 years old and possesor of an Extra Special Chromosome. Rosie 10 ( who enjoys a life enhanced by the Joys and Trial of CdLS) 6, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating. And who is 4 years old and a big school girl now! Isle of Wight UK http://uk.photos.yahoo.com/tdlhillier mailto:tdlhillier@... www.cdlsrosie.homestead.comWith Yahoo! Mail you can get a bigger mailbox -- choose a size that fits your needs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hello everyone, I too am a new correspondent having spent the last few weeks reading about you all yet feeling reluctant to reply because I have never joined in a chat group nor communicated with people I don't know! So here goes....I was prompted to write something encouraging after reading the notes about life expectancy. I have had b. for 48 yrs having contracted it as an infant. My father also had it contracting it in his early 30's. He had a lobectomy shortly after and despite chain smoking all his life lived to be 81 and lived a normal life up until then. My older brother also had it contracting as an infant...he drowned aged 43..he also had a lobectomy and loved telling curious people that the large scar on his back was from a shark attack! Both my father and brother had a more severe form of the illness than I do. After reading some of your notes I was prompted to ask my chest physician whether I had a mild form of the disease...he said no...it was in the middle range. I feel for those of you who are having a hard time of it. My biggest moment of grief was when I had an emergency caesarian with my first child and none of the doctors thought about what happens when you've got a huge scar on your stomach and you need to cough constantly. I'm sure you can all guess how awful it was and how sick I became!..I thought I was going to die. Next time around I another emergency caes'n with better outcomes chest wise but for the 3rd caesar'n (I was 39 by then!) I had a new chest dr. and we were totally prepared and it went like a dream. Had pneumonia a few yrs ago and that knocked me around a bit but apart from that I do just about everything....I continue to exercise regularly...walk up my local hill (it's 1m off being a mountain) 4 or more times a week..I am absolutely no good at swimming or running as I just don't have the lung power! Living in the tropics is an added dimension to respiratory function as well. Ever felt the effects of a sauna? That's what it's like during our wet season. I intend to live to a ripe old age if I can stay healthy but am feeling a bit depressed at being only a few days off another birthday whose number I cannot utter! Imagine how I'll feel when I'm 80!!! Kind regards to you all...coughers wherever you be...from Jessie. Re: Life expectancy > When I was diagnosed at age six, the doctors told my parents all the > things they thought I would not be able to do...participate in > sports (I fenced in high school), walk very far (I regularly walked > miles when I didn't have a car, and still do in nice weather), work > full-time (I work full time in a school and have in the past worked > as many as three jobs and gone to college part time), my lungs would > deteriorate (they haven't since 1988, at least), and they certainly > didn't expect me to have a full life expectancy. Since I can do all > that other stuff that they didn't expect me to be able to do, I take > with a very large grain of salt any life expectancies that I am > quoted. > > Karin > > > I fully understand how you feel about being around people who are > sick.......I won't let anyone in my house who even looks like they > don't feel good unless they live here......my kids are so great > about screening thier friends health before bringing them > home......I was also told that I would never get better...I might be > able to stay the same instead of getting worse but I would never > actually be better... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Jessie, Welcome to the group. I used to feel like I was the only one on the entire planet who had this wonderful ailment. We are quite an elite group aren't we. I liked the " shark attack " explanation for the scar. My lobectomy was done last June and although no one but my husband and my doctor will ever see the scar, I might say it's from a shark attack anyway (I live 1,000 from the nearest ocean). Barb Re: Re: Life expectancy << File: ATT00005.htm >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hello jessie........from one cougher to another I'm glad to meet you..... sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 absolutley wonderful story lynne.......keeps my hopes going sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2003 Report Share Posted February 28, 2003 Thanks for the welcoming messages. Have just read the notes about coughing...thought some of you might like to hear something on a lighter note. My 3 children can recognize my cough anywhere and when they can't find me in department stores, supermarkets etc I give a little cough and sure enough their heads appear with a cute remark like " Oh there you are mum! " I used to do the same at high school to let my friends know where I was sitting at assembly! My husband and I do it too as he has asthma and has his own cough that the kids and I recognize! Kind regards from Jessie. Re: Re: Life expectancy > > << File: ATT00005.htm >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2003 Report Share Posted February 28, 2003 Re: Re: Life expectancy Jessie, My family also uses my coughing to find me in the department store. One of my sons works in a large grocery store and has actually known that I was in the store because he heard me cough. I wonder what would happen if we all (including families) got together in one big department store and started coughing. Do you think the kids would know who was who? Happy coughing to one and all. Barb << File: ATT00019.htm >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2003 Report Share Posted March 6, 2003 My 3 children can recognize my cough anywhere and when they can't find me in department stores, supermarkets etc I give a little cough and sure enough their heads appear with a cute remark like " Oh there you are mum! " I used to do the same at high school to let my friends know where I was sitting at assembly! My husband and I do it too as he has asthma and has his own cough that the kids and I recognize! Kind regards from Jessie. *cracking up* I thought I was the only one who did this!! I do this with my husband all the time when we go shopping!! Karin Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.