Guest guest Posted November 28, 2004 Report Share Posted November 28, 2004 Hi June I too had a lousy night, in 2 shifts too, asthma. It is really starting to warm up and get humid, that spells asthma for me. I hope the jacuzzi worked, it does help me, but I get greedy and don,t want to get out. Of course I usually muck it all up by getting in the pool and having a short swim. Then undo all the great work, because it just eggs on the R/A. Keep your chin up, wer,e all here to give you the old c, mon. Hope you( we have a much better night) and hope you have a better day too, Hugs Sandy. > >Reply-To: bronchiectasis >To: bronchiectasis >Subject: Ostrich syndrome! >Date: Sun, 28 Nov 2004 08:17:13 -0000 > > >Good morning everyone, here I am back on line after a night from hell! >Managed 5 hours sleep in 2 bouts, nights are getting worse and worse.I'm >doing the interactive diary with the National Jewish, my graphs look like a >mountain chain all peaks and troughs but it shows how unstable I am. Can >really recommend this as a helpful tool, it tracks all your medicines, >symptoms, peak flow. My doctor finds it very useful. >Del I'm having an attack of ostrich syndrome (bury my head in the sand) I >can't >deal with getting my latest results so I'm waiting for my next Brompton >appointment. If I phoned they would give them to me but I'm so scared it's >Psuedonomas and I feel so ill just now I don't feel I can deal with that >bad >news. I'll know soon enough! >Sandy thanks for all the positive things you write, when I'm not feeling so >ill I >try to be positive too but why does it all have to be so hard. Like you I >love >music (rock is my favourite and Elvis)but can't get out so much to see live >stuff >anymore. I love wine but it is absolutely no no now, makes me wheeze like >crazy. Hubby gets very cross when I lose my willpower and have a glass, he >tells me I'll be ill and of course I am. >Off to the Jacuzzi at the gym now to try and relieve my poor aching ribs, >feel >like I've been run over today! >Love from London and thanks for all the support June > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 June Be very very very careful going in any jacuzzi. There is something calle Hot tub lung and it will ravage your lungs. After transplant we can never go in a hot tub again b/c of how full they are of bacteria and the steamy chemicals.It sticks b/c I have back pain and all. BeckiLife is not measured by the number of breaths we take, but by the moments that take our breath away.Double Lung Transplant Recipient and PFO Repairat Mayo Clinic ville,Fla. Sept 15,2004YOUNGLUNG EMAIL SUPPORT LISThttp://health.groups.yahoo.com/group/YOUNGLUNG/Pediatric Interstitial Lung Disease Societyhttp://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hey there New lungs are great and it wasn't as bad as I thought it would be. HAve the mentioned it to you? BeckiLife is not measured by the number of breaths we take, but by the moments that take our breath away.Double Lung Transplant Recipient and PFO Repairat Mayo Clinic ville,Fla. Sept 15,2004YOUNGLUNG EMAIL SUPPORT LISThttp://health.groups.yahoo.com/group/YOUNGLUNG/Pediatric Interstitial Lung Disease Societyhttp://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Becki, how lovely to hear from you, how are your new lungs doing? Must be wonderful to have a chance to breathe properly again, was it as bad as you expected, just the thought of going through all that makes me shudder. You have been so brave! Yes I have heard lots of bad press about jacuzzi's and it does worry me, however I only ever use the one at my private health club and the cleanliness is first class. Sometimes the chlorine in it makes me wheeze but the benefits are tremendous. It eases my aching ribs and usually makes a huge difference to the way I breathe for some hours after. I use the steam room too and that helps. I now have my own jacuzzi mat at home which goes in the bath which is wonderful, no chemicals with that just my eucalyptus oil, bliss! Stay well Love June > June > Be very very very careful going in any jacuzzi. There is something > calle Hot tub lung and it will ravage your lungs. After transplant we > can never go in a hot tub again b/c of how full they are of bacteria > and the steamy chemicals.It sticks b/c I have back pain and all. > > > Becki > Life is not measured by the number of breaths we take, but by the > moments that take our breath away. > Double Lung Transplant Recipient and PFO Repair > at > Mayo Clinic ville,Fla. Sept 15,2004 > YOUNGLUNG EMAIL SUPPORT LIST > http://health.groups.yahoo.com/group/YOUNGLUNG/ > Pediatric Interstitial Lung Disease Society > http://groups.yahoo.com/group/InterstitialLung_Kids/ > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2004 Report Share Posted December 3, 2004 Hello Becki, I don,t know you, I have only been with the group for about 2 months. Well done, as someone wrote, you are very brave. I have a very close friend who was waiting for a lung transplant. he had to move from Hervey Bay to a block of units near the PA hospital in Brisbane, he had a 13 yr old daughter, who had major disabilities, so he had to leave her behind with friends, he had to stay in those units for 2 months prep, then, had to wait for lungs, he was beeped on two occassions, to get there immediate as there was lungs, but each time they got him prepped and into theatre, operated on, and waiting for lungs, the first were damaged, so , stitched back up, sent beck to unit to yet again wait, then he was at a close by club, during an afternoon, got the beep, started his journey back( walk) and collapsed, he got so out of breath, as someone helped him to the hospital, he got out of their car, and stumbled, and hit his head, so he was hospitalised, but they didn,t give him the lungs( they thought he had been drinking. They took blood tests and realised he was telling the truth and that his story was true, too late of course they gave the lungs to someone else.( should have tested him at the time). Any way he ended up waiting desperately through all this, for another 8 months for his lungs. Six months later got a really bad infection, but was able to kick it, now as fit as anything, great for him, to be able to be a strong health dad( single dad) A wonderful Xmas present for us all, to have him back with his daughter, who had undergone heart surgery while her dad was waiting for lungs. So good on you, it is a battle all the wait, all the things you have to do to keep fit and well for the op, and again after. Absolutely great news, to hear you are well and happy. Did you have a long wait? Very brave you are, Sandy. >From: MissGooberGirl@... >Reply-To: bronchiectasis >To: bronchiectasis >Subject: Re: Ostrich syndrome! >Date: Fri, 3 Dec 2004 12:20:33 EST > >Hey there >New lungs are great and it wasn't as bad as I thought it would be. HAve the >mentioned it to you? > >Becki >Life is not measured by the number of breaths we take, but by the moments >that take our breath away. >Double Lung Transplant Recipient and PFO Repair >at >Mayo Clinic ville,Fla. Sept 15,2004 >YOUNGLUNG EMAIL SUPPORT LIST >http://health.groups.yahoo.com/group/YOUNGLUNG/ >Pediatric Interstitial Lung Disease Society >http://groups.yahoo.com/group/InterstitialLung_Kids/ Quote Link to comment Share on other sites More sharing options...
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