Guest guest Posted October 12, 2002 Report Share Posted October 12, 2002 I have sometimes felt isolated too as there are no support networks for parents of youngsters with the condition. Her energy and concentration levels have been affected and she can only work part time. Lynne My Son has Bronchiectasis, diagnosed in February this year. He has Down Syndrome and heart and hip problems too. I know what you mean about feeling isolated as a parent. when I found this group I almost felt like an intruder but noone has ever made me feel less than at home. We are from the Isle of Wight where abouts are you? Tina Hillier from Isle of Wight UK Mum to , 12 years old and possesor of an Extra Special Chromosome. Rosie 10 ( who enjoys a life enhanced by the Joys and Trials of CdLS) 5, A budding Artist and Singer, Famously ignoring the fact that his eyesight is deteriorating. And who is 4 years old and a very proud school girl now! http://uk.briefcase.yahoo.com/tdlhillier Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 12, 2002 Report Share Posted October 12, 2002 Hello, I was diagnosed with bronchiectasis 8 years ago. I haven't been to the doctor for 7 years. I was on a breathing machine and then I wuit doing that because it made me shake really bad. I did not know anyone else who has had this disease until I joined this club..group... But I just wanted to let you , if your daughter would like to talk, then you can give her my email address...thehoopes44001@... I figured since I am 22 and I am around her age that she would like to talk me about it.. Robin - In bronchiectasis@y..., " mini_mum1997 " <Lynne@M...> wrote: > I just joined yesterday. > > My daughter who is now 20 has had bronchiectasis for 6 years. They do > not know what caused it. Her mucus never grows any bugs, she is not > allergic to anything and is not asthmatic. She just started coughing > one day and despite basic antibiotics from the GP it carried on. In > fact they discovered she had broken two ribs from the coughing. A > bronchoscopy showed nothing and her immune system is absolutely fine. > They've done every test on her they can think of. I think the initial > diagnosis was from her CT scans. > > She is treated at a specialist heart and lung hospital in their CF unit > as her treatment bears a lot of similarities with cystic patients, and > it is better for her to be with younger people than those on the chest > medical ward. This has been really good for her. > > I lose track of which drugs she's on at any time as she manages it > herself. She takes inhaled colomycin and pulmozyme (dornase alfa) > daily. She is also on doxycyclin for the winter. She doubles up the > dose if she gets a cold. Doxycyclin has meant that her > hospitalisations for IVs have been reduced from every 6-8 weeks to just > twice a year which has lessened the need for a portacath. She doesn't > have one, and if it can be avoided she'll do so. She has Tobramycin > and Aztreanam for the IVs. She stays in hospital for a couple of days > to get the Tobramycin levels measured and then administers the drugs at > home. She's on a couple of inhalers (I forget which) for hyper- reactive > airways. > > I used to do percussion on her but she now does postural drainage and > is very good at keeping to the regime. I seem to remember that she > tried the flutter device a few years ago, but it wasn't effective on > her. The worst part of her daily regime is not being able to flop into > bed as soon as she's tired as she has all the nebs to do. > > It's interesting that no one else here has mentioned pulmozyme. It's > very expensive (£25 a shot - thank you NHS!) and is normally used by CF > patients as it thins the mucus, but anything that helps the mucus get > up and out of the lungs has to be good. She tried Ivy-Thyme complex > from a health food shop once, and it had more or less the same effect, > but will use pulmozyme as long as she can get it. > > It has been incredibly isolating for her having this condition as she > has only met one other person her age who has anything resembling it. > She knows a lot of the CF patients and has made one or two good > friendships, but they have a different set of problems and it's not the > same. I have sometimes felt isolated too as there are no support > networks for parents of youngsters with the condition. Her energy and > concentration levels have been affected and she can only work part > time. She would probably have gone to university if her studies hadn't > been so badly affected and now she feels the loss of old school friends > as they are in their third year of university and understandably the > old common ground has disappeared. For the first time this summer she > has suffered from severe depression and is now being treated for that. > > Lynne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 Hi Craig, Welcome aboard. Feel sure no one here will hold it against you being from NZe, understand not a bad place to visit. Glad you are here and am sure you find this a great group to be with. Everyone is so friendly here and its great to be able to exchange helpful tips with each other. Stick around. <<<hugs>>> Nona Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 Welcome to our group craig..........we are always happy to hear from new members.......sounds like you have had quite a bout with all this.......glad to hear you are still able to work......I'm am not able to work any longer and am trying to learn to enjoy it......(trying being the key word) I use to think it would be great to stay home........now I'm bored all the time.....lol I am 36 years old and live in Tennessee.......I have 3 wonderful children and a very loving and supportive husband....whom without I could not have made it this far.....he has been my inspiration to keep going and not just throw my hands up and give up..........the great thing about having this disease for me is that I'm not allowed to dust or vacum..(I have dr's written prove....had to get that before my kids believed me) and I am not supposed to mow the grass..........so there are some plus sides to this....lol I have only been aware that I have this disease for about 8 months now so I am still learning something new every day......but this support group has been one of the greatest things I have ever joined........these people are truley wonderful.........I'm sure you will enjoy being a part of our little family....... sondra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2003 Report Share Posted February 15, 2003 Welcome to our family - I'm from Sydney as are many others and we really do love you NZers. Take care and it's good to have you with us. Madeleine new member Hello, I'm new to this discussion / support group - . I am a 36 yr old NZ'er(don't hold that against me !! ) diagnosed with bronchi. in 1994 (child hood health problems and food allergies including measles at 1yr of age - which is suspected of causing onset of bronchi.) Had partial lung removal to remove localised infection in '94 , the cut lung caused further problems later including aspergillosis and a stoma (opening) into chest cavity to allow air to escape from air leak (sounds weird, I know ) In hindsight . it wasn't the best decision to have the op., but as they say hindsight is a wonderful thing ! Of course the bronchi is still lurking ... However I'm married to a wonderful wife and have one daughter, and still able to work - at this stage - and enjoy life . I'm learning quite a bit about percussors, pseudomonas etc ... hey, keep up the smiles and support ! God bless Craig Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2003 Report Share Posted February 16, 2003 Hi Craig, I've finally got someone to talk to who has had to deal with thoracic surgery (not that I'm happy that you had to go through it). I had a lobe of one lung removed last June. I already had aspergillus before the surgery. Fortunately, I didn't wind up with the complications that you've had, but it sure didn't stop all of the problems with infections. I've had four big infections since returning to work in August. Too bad we don't live closer (I'm in the U.S.)-we could compare scars. Barb new member << File: ATT00000.htm >> Hello, I'm new to this discussion / support group - . I am a 36 yr old NZ'er(don't hold that against me !! ) diagnosed with bronchi. in 1994 (child hood health problems and food allergies including measles at 1yr of age - which is suspected of causing onset of bronchi.) Had partial lung removal to remove localised infection in '94 , the cut lung caused further problems later including aspergillosis and a stoma (opening) into chest cavity to allow air to escape from air leak (sounds weird, I know ) In hindsight . it wasn't the best decision to have the op., but as they say hindsight is a wonderful thing ! Of course the bronchi is still lurking ... However I'm married to a wonderful wife and have one daughter, and still able to work - at this stage - and enjoy life . I'm learning quite a bit about percussors, pseudomonas etc ... hey, keep up the smiles and support ! God bless Craig Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Hello. I've just joined this group. I'm 27 years old and have bronchiectasis. Right now I have a severe lung infection, pseudomonas. Anyway, nobody has this annoying lung disorder, so I'm very anxious to talk to someone about it. Here is some information about me. My name is Maggie . I'm married with two boys, age 9 and 1. I've been married for four years. I was diagnosed with B about five years ago. Back then I did a search on the web and found absolutely nothing, but now there is much more to browse. Blah, blah, I'm babbling. Anyway, I am very happy to have found this support chat. I'm hoping talking to people with my ailment might be a good release. Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Hi Maggie, welcome, where are you from? My son is 12 and has Bronchiectasis amongst a host of other problems. He too has the pseudomonas. has a 3 monthly regime of IV antibiotics in the hope of preventing a further flare up. again welcome Tina 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 Hi , welcome to the group, Maggie. Don't be shy on sharing if you want to - someone will be able to relate to what you're going thru ! Tina, - good to hear of you and your family having fun together with Jonathon out of hospital. cheers Craig Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Maggie, Welcome to the group :-) I'm glad you found us, as you will find a lot of support and others to care and share. I've have bronchiectasis (since 2 years old) and I also have the pseudomonas infection. I was recently in hospital for IV antibiotics, and usually have treatment every 6-12 months. I take Ciproxin and inhaled Tobramycin at home. I know what you mean, until I started searching around the net, I always thought I was the only one blessed with this condition (lol)! It certainly is no fun, and I'm sure it is hard at times with a a young family to care for. I'm from Sydney, Aussie, and I'm sure you will hear from others. Just ask away if you have any questions, okay. Will write more later. Take care. Bunny -----Original Message-----From: Maggie Sent: Thursday, 27 February 2003 5:06 PMTo: bronchiectasis Subject: new memberHello. I've just joined this group. I'm 27 years old and havebronchiectasis. Right now I have a severe lung infection, pseudomonas.Anyway, nobody has this annoying lung disorder, so I'm very anxious totalk to someone about it. Here is some information about me.My name is Maggie . I'm married with two boys, age 9 and 1. I'vebeen married for four years. I was diagnosed with B about five yearsago. Back then I did a search on the web and found absolutely nothing,but now there is much more to browse. Blah, blah, I'm babbling. Anyway,I am very happy to have found this support chat. I'm hoping talking topeople with my ailment might be a good release.Maggie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 Hi Maggie, Pseudomonas is a nasty little thing isn't it. It seems that there are quite a few of us with it and that treatments vary considerably. Having a house full of boys can be very interesting. I have four of them and one daughter who, I think, has saved my sanity. Actually, the boys are a lot of fun. Barb new member << File: ATT00003.htm >> Quote Link to comment Share on other sites More sharing options...
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