Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Hi Joan, Las week I finished IV abx via cannula 7 days then by picc-line 7 days; 4 x daily Timentin, 1 x day Gentamycin for Pseudomonas bronch. Had repeat exacerbations since early December unresponsive to oral antis. I was dx bronch age 18, and this was my 2nd time IV, (last was 05). I’m much slower than last time picking up but will get there ...! On the colourful subject of sputum colour one of my physios, (from Texas) who came to give me ‘the clap’ while I was I hospital said she was into sputum!! My usual normal is variable – pale-mid, yellow/green, with dark green-orange ‘plugs’ occasionally. With an infx brewing, developing, there’s a ‘rainbow’ of shades of almost fluorescent bright greens to dark green, sometimes combined w tan/orange ‘edging’!. That you had a quick response is great, and generally an good indication the infx is gone back under control. Keep an eye on the sinusitis / pnd as this will cause lung re-infx. I now have ‘severe sinus disease’ dx, mainly cos due to being ignored... Now too late to do much I suspect. Re continuing regimen: it changes and modifies according to your individual health, and pathologies (bugs causing infx). To prevent re-infx as much as poss do maintain good activity (anything) and/or postural drainage – whatever gets it up (the sputum that is!). And whatever works for you in inhaled meds- Seretide w spacer doesn’t leave residue on back of throat, and has been tested effective for COPD, incl bronch. Keeping that gunk free and moving, up and out is best prevention above all.... Along w that check out Sandy Ts very detailed helpful hints on dietary things such as ginger, garlic and many more... Pseudomonas is present on everything, everywhere, in your lungs anyway, but once it is identified as a main pathogen, a cold or flu can rebuild up the numbers to where you need strong meds again. But being only recently dx, you may have years before another infx, or none at all, as you become more informed and learn what you can do to remain infx free – one of which is learning all you can about ways to control sinus infx too. I hope this is of help, I have many websites I’ve researched if you would like me to post. happy breathing J joy -- -- " Sentient beings, all our very own mothers, are as limitless as space” Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Wonderful. So glad to hear that someone else has or had pseudo. Why is it making me feel vetter knowing that someone else has been thru this. I am concerned because for 2 weeks now, cough up next to nothing. I don’t feel like I need to cough. Am using vest as we speak. I have saved some of people’s email and websites but yours is the closest I can come to identifying with another’s. Why is pseudo so serious? And thanks for replying. Joan From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of joy hensby Sent: Tuesday, April 29, 2008 8:54 AM To: bronchiectasis Subject: Re: experiences Hi Joan, Las week I finished IV abx via cannula 7 days then by picc-line 7 days; 4 x daily Timentin, 1 x day Gentamycin for Pseudomonas bronch. Had repeat exacerbations since early December unresponsive to oral antis. I was dx bronch age 18, and this was my 2nd time IV, (last was 05). I’m much slower than last time picking up but will get there ...! On the colourful subject of sputum colour one of my physios, (from Texas) who came to give me ‘the clap’ while I was I hospital said she was into sputum!! My usual normal is variable – pale-mid, yellow/green, with dark green-orange ‘plugs’ occasionally. With an infx brewing, developing, there’s a ‘rainbow’ of shades of almost fluorescent bright greens to dark green, sometimes combined w tan/orange ‘edging’!. That you had a quick response is great, and generally an good indication the infx is gone back under control. Keep an eye on the sinusitis / pnd as this will cause lung re-infx. I now have ‘severe sinus disease’ dx, mainly cos due to being ignored... Now too late to do much I suspect. Re continuing regimen: it changes and modifies according to your individual health, and pathologies (bugs causing infx). To prevent re-infx as much as poss do maintain good activity (anything) and/or postural drainage – whatever gets it up (the sputum that is!). And whatever works for you in inhaled meds- Seretide w spacer doesn’t leave residue on back of throat, and has been tested effective for COPD, incl bronch. Keeping that gunk free and moving, up and out is best prevention above all.... Along w that check out Sandy Ts very detailed helpful hints on dietary things such as ginger, garlic and many more... Pseudomonas is present on everything, everywhere, in your lungs anyway, but once it is identified as a main pathogen, a cold or flu can rebuild up the numbers to where you need strong meds again. But being only recently dx, you may have years before another infx, or none at all, as you become more informed and learn what you can do to remain infx free – one of which is learning all you can about ways to control sinus infx too. I hope this is of help, I have many websites I’ve researched if you would like me to post. happy breathing J joy -- -- " Sentient beings, all our very own mothers, are as limitless as space” Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Hi Joan, Pseudomonas aeruginosa is described as one of the ‘nastiest’ pathogens b/c it is everywhere, it lives on everything (esp water), like Staph does - on our skin, our lungs, etc, and needs almost no food source to survive – and develops immunity/resistance to antiseptics and abx quite readily. It also masks in sputum, so even if it is present in what you cough up it can go undetected.... Clever, hey? I haven’t retained websites b/c not many others on this site have pseudomonas infx, but have saved info as pdf for myself. I can send as attachments to your personal email – pls let me know if wish me to do so, I have found it of great benefit to try to understand the nature of this tricksy pathogen... I’ve had a lifetime of copious sputum production except for a day or 2 around the onset of a ‘serious’ infx (abx unavoidable or pneumonia next stop), and this last infx the ‘dry’ went on for much longer, foxing my GP who seems bemused and disbelieving when I kept saying I felt really unwell, thing didn’t feel right.....i ended up in hospital for 14 days IV abx.... (but I’ve had bronch all my life, so is well advanced now...). Psuedo was dx around 8 yrs ago, and I was tested for resistance, and there’s only one oral abx left, but I think / feel like it is becoming ineffective, even tho pathology results come back neg. The Vest isn’t available here, or percussion physio, which makes things difficult when I’m too sick/weak to cough adequately, but definitely keeping any activity which keeps stuff moving up and out is best prevention of infx. Tai Chi is excellent b/c it really gets you to BREATHE really well, and deeply, I always get stuff up afterwards, and is good for joint pain, and general joint strength (and osteoporosis etc). The website below is of good general info for bronch, and related probs such as sinusitis, arthritis and etc.... www.australiandoctor.com.au/ htt/pdf/AD_HTT_031_038___MAY20_05.pdf It’s not a ‘light’ dx, so I understand your feeling better knowing there’s someone else ‘out there’ who knows it, as I did when I met someone else (who passed away last week....). So apart from you, I now don’t know of anyone else in this world with pseudomonas! Sisters in pseudo! joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Dear sis. My email address is : queenmum32909@.... Another woman must have read our group’s messages and emailed me with same. Has been thru all we have. I believe I will hear from her soon. I am 66, she is 77, and I love to hear of “old” people with it. Old like 95, we’ll search. Please email me as you have news or anything else. I will let you know as I get more informed. Believe I said I was going to inx dis dr Thurs. Am thinking he will take me off infusions. Please let’s keep in touch as we have info. Am going to forward to you the other person’s email but would rather do it just to you. In appreciation, Joan From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of joy hensby Sent: Tuesday, April 29, 2008 11:13 AM To: bronchiectasis Subject: Re: experiences Hi Joan, Pseudomonas aeruginosa is described as one of the ‘nastiest’ pathogens b/c it is everywhere, it lives on everything (esp water), like Staph does - on our skin, our lungs, etc, and needs almost no food source to survive – and develops immunity/resistance to antiseptics and abx quite readily. It also masks in sputum, so even if it is present in what you cough up it can go undetected.... Clever, hey? I haven’t retained websites b/c not many others on this site have pseudomonas infx, but have saved info as pdf for myself. I can send as attachments to your personal email – pls let me know if wish me to do so, I have found it of great benefit to try to understand the nature of this tricksy pathogen... I’ve had a lifetime of copious sputum production except for a day or 2 around the onset of a ‘serious’ infx (abx unavoidable or pneumonia next stop), and this last infx the ‘dry’ went on for much longer, foxing my GP who seems bemused and disbelieving when I kept saying I felt really unwell, thing didn’t feel right.....i ended up in hospital for 14 days IV abx.... (but I’ve had bronch all my life, so is well advanced now...). Psuedo was dx around 8 yrs ago, and I was tested for resistance, and there’s only one oral abx left, but I think / feel like it is becoming ineffective, even tho pathology results come back neg. The Vest isn’t available here, or percussion physio, which makes things difficult when I’m too sick/weak to cough adequately, but definitely keeping any activity which keeps stuff moving up and out is best prevention of infx. Tai Chi is excellent b/c it really gets you to BREATHE really well, and deeply, I always get stuff up afterwards, and is good for joint pain, and general joint strength (and osteoporosis etc). The website below is of good general info for bronch, and related probs such as sinusitis, arthritis and etc.... www.australiandoctor.com.au/ htt/pdf/AD_HTT_031_038___MAY20_05.pdf It’s not a ‘light’ dx, so I understand your feeling better knowing there’s someone else ‘out there’ who knows it, as I did when I met someone else (who passed away last week....). So apart from you, I now don’t know of anyone else in this world with pseudomonas! Sisters in pseudo! joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2008 Report Share Posted April 29, 2008 Hi Joy, I would think the Vest could be mailed anywhere in the world! UPS, etc. go all over nowadays. Surely your docs can perscribe one for you, it's not rocket science, and they've been around for many years so it's not a brand new technology. I would also think you could hire someone, home health aide or young person, to help with the chest percussion. It's so "key" to keeping this under control! Without doing it every day I can't get much mucus up, even though I don't have too much. We can't take any $ with us when we go, might as well spend it on something that can help you stay healthy and more comfortable. Also, strange that your doc can't understand that if mucus isn't coming up (you're dry spells) it's staying down in your lungs. Of course it's going to cause things to get worse! A no-brainer. That's the whole point behind getting it up every day. I think of you often and pray for you. You deserve better. It's great to see that you are assertive about your care. We have to be. Kay -------------- Original message -------------- Hi Joan,Pseudomonas aeruginosa is described as one of the ‘nastiest’ pathogens b/c it is everywhere, it lives on everything (esp water), like Staph does - on our skin, our lungs, etc, and needs almost no food source to survive – and develops immunity/resistance to antiseptics and abx quite readily. It also masks in sputum, so even if it is present in what you cough up it can go undetected.... Clever, hey? I haven’t retained websites b/c not many others on this site have pseudomonas infx, but have saved info as pdf for myself. I can send as attachments to your personal email – pls let me know if wish me to do so, I have found it of great benefit to try to understand the nature of this tricksy pathogen...I’ve had a lifetime of copious sputum production except for a day or 2 around the onset of a ‘serious’ infx (abx unavoidable or pneumonia next stop), and this last infx the ‘dry’ went on for much longer, foxing my GP who seems bemused and disbelieving when I kept saying I felt really unwell, thing didn’t feel right.....i ended up in hospital for 14 days IV abx.... (but I’ve had bronch all my life, so is well advanced now...). Psuedo was dx around 8 yrs ago, and I was tested for resistance, and there’s only one oral abx left, but I think / feel like it is becoming ineffective, even tho pathology results come back neg. The Vest isn’t available here, or percussion physio, which makes things difficult when I’m too sick/weak to cough adequately, but definitely keeping any activity which keeps stuff moving up and out is best prevention of infx. Tai Chi is excellent b/c it really gets you to BREATHE really well, and deeply, I always get stuff up afterwards, and is good for joint pain, and general joint strength (and osteoporosis etc).The website below is of good general info for bron ch, and related probs such as sinusitis, arthritis and etc....www.australiandoctor.com.au/ htt/pdf/AD_HTT_031_038___MAY20_05.pdf It’s not a ‘light’ dx, so I understand your feeling better knowing there’s someone else ‘out there’ who knows it, as I did when I met someone else (who passed away last week....). So apart from you, I now don’t know of anyone else in this world with pseudomonas! Sisters in pseudo!joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hi Joy, since we last spoke re pseudo., I went to an infusion center twice a day everyday for 30 days to have antibiotics injecteed thru a picc-line. While doing this I used nebulizer for TOBI and albuterol(I think), both twice a day. And I used the vest twice a day, _ I took oral probiotics and activia.. I know what I am about to tell you is prob temporary, but since the beginning of May, I have been like I was before bronc, pseud, and Mac. I worry because I have no cough and no sputum. I stopped Adair and am only on spirva, and so thrush is gone and voice has returned. Am still tired but who knows if it is bronc related. Am 67 and have lots of company and running around, so could, just could be that. Weird that I am waiting for the other shoe to drop. And worry because all is seemingly well. There was one other woman who followed our trail, but can’t remember who it was. Maybe Barbra? Have my fingers crossed for me and all of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 I have written before that I have taken the antibiotic sulfatrim for about 11 months now and I am perfectly well with no sign of bronc. Before I was sick all the time with pneumonia and constant mucus and cough etc. I read an article on the internet that said they ran a test with my medicine and found out that bronc people were kept well for over a year with this May not work for everyone but great for me. Dont know what the future holds but this year has been lovely. Have my fingers crossed. JuneK RE: experiences Hi Joy, since we last spoke re pseudo., I went to an infusion center twice a day everyday for 30 days to have antibiotics injecteed thru a picc-line. While doing this I used nebulizer for TOBI and albuterol(I think), both twice a day. And I used the vest twice a day, _ I took oral probiotics and activia.. I know what I am about to tell you is prob temporary, but since the beginning of May, I have been like I was before bronc, pseud, and Mac. I worry because I have no cough and no sputum. I stopped Adair and am only on spirva, and so thrush is gone and voice has returned. Am still tired but who knows if it is bronc related. Am 67 and have lots of company and running around, so could, just could be that. Weird that I am waiting for the other shoe to drop. And worry because all is seemingly well. There was one other woman who followed our trail, but can¢t remember who it was. Maybe Barbra? Have my fingers crossed for me and all of you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 10, 2008 Report Share Posted June 10, 2008 I don’t feel like I have anything to cough up. Am going to try to just enjoy it and stop worrying about how long it will last. Thanks. From: bronchiectasis [mailto:bronchiectasis ] On Behalf Of joy Sent: Tuesday, June 10, 2008 9:35 AM To: bronchiectasis Subject: Re: experiences Hi Joan, If you have no bad-coloured sputum, and not much of it – ENJOY!!! If you’re concerned tho is it cos you feel like you have sputum which won’t move?? Unwell ? Or just tired, maybe need a little more time to pick up.... At 56 I did despair for a while after the IV abx, but kept being told they’re strong abx, hard for the body to assimilate and break down, so takes a while to feel well.... I slept lots, even during day, a lot, for a few weeks. And still do if needed eg after a walk that was toooo hard and steep! Hope you’re feeling better soon.... joy Quote Link to comment Share on other sites More sharing options...
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