Guest guest Posted March 20, 2010 Report Share Posted March 20, 2010 hi Kay, so true, and those involved in my immediate care realise that physio is a major key.... but the service provision just isn't there. I'd prefer the Vest or something like as there are long breaks over Easter & xmas with no services, it would also give me independence.... I gave my specialist a copy of the Vest info, hopefully will have some news when he comes back from a conference next week, here's hoping!! joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 21, 2010 Report Share Posted March 21, 2010 Yes, hopefully your doctors will be anxious to learn what's available and effective. With most doctors now recommending anti's no more than absolutely necessary to prevent resistance the Vest and physical therapy percussion seem like no-brainers. You take care of yourself and educate those medical people! Nurses who care for patients might like learning about the Vest. Sometimes nurses thoughts are more open to new ideas, and they're directly involved with patient's progress/set-backs. Easter blessings to you... Kay Re: hospital hi Kay,so true, and those involved in my immediate care realise that physio is a major key.... but the service provision just isn't there. I'd prefer the Vest or something like as there are long breaks over Easter & xmas with no services, it would also give me independence.... I gave my specialist a copy of the Vest info, hopefully will have some news when he comes back from a conference next week,here's hoping!!joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 22, 2010 Report Share Posted March 22, 2010 hi KAy, seems treatments, like many things, follow fads and fashions.... the prevailing one for some years now from hospital physios re percussion is " oh we don't do passive physio anymore " ...! so, let me drown in infections? lovely! I'm starting to get somewhere now with a specialist who is more proactive, a case manager and a community physio who doesn't have that attitude. Will be interesting to see what this hospital visit is like - going in via admissions instead of 30 hr ED... everything planned beforehand - a new experience here. Don't know about hospital nurses being interested - they usually don't have a clue what bronch is and ask me to spell it! anyway, I'm off tomorrow morning, so won't be online again til end of the month or thereabouts.... cheers all, and everyone stay well - as poss! joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 I have to go to the hospital tomarrow for ten days. Not sure what they called it I have but I need to take strong antibiotics for ten days. Not looking forward to it. Joy L Subject: Re: Re: frequent sinus infectionsTo: bronchiectasis Date: Saturday, February 5, 2011, 7:11 PM hi Jona,It is generally considered part & parcel of bronch, along with arthritis & other inflammatory conditions.And because the sinuses drain downwards it naturally will spread to lungs -so, get a chest infx cleared, a sinus infx will re-infect lungs again. I had FESS (endoscopic sinus surgery) a couple of years ago and do a sinus saline flush every evening and now breathe much better but still do have coloured mucous from there, so I know it is Pseudomonas. I took a hint from someone on this site and sometimes add a few drops of vinegar to the flush (also bicarb) & sometimes that clears it.The flush mix I use is 2 parts salt to 1 part bicarb, I mix and store in glass jar; use about a half tspoon to 70-100 mls water. Add a few drops of vinegar if looking infected.I can send you an article to your private e-address, which clarifies a lot of these 'other' conditions which actually seem to be part of the package, if you wish, just let me know.cheers,joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 My thoughts are with you...hope it's a short stay for you, EILEEN-FL Subject: Re: Re: frequent sinus infectionsTo: bronchiectasis Date: Saturday, February 5, 2011, 7:11 PM hi Jona,It is generally considered part & parcel of bronch, along with arthritis & other inflammatory conditions.And because the sinuses drain downwards it naturally will spread to lungs -so, get a chest infx cleared, a sinus infx will re-infect lungs again. I had FESS (endoscopic sinus surgery) a couple of years ago and do a sinus saline flush every evening and now breathe much better but still do have coloured mucous from there, so I know it is Pseudomonas. I took a hint from someone on this site and sometimes add a few drops of vinegar to the flush (also bicarb) & sometimes that clears it.The flush mix I use is 2 parts salt to 1 part bicarb, I mix and store in glass jar; use about a half tspoon to 70-100 mls water. Add a few drops of vinegar if looking infected.I can send you an article to your private e-address, which clarifies a lot of these 'other' conditions which actually seem to be part of the package, if you wish, just let me know.cheers,joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Good luck in the hospital! Have someone bring you lots of healthy food. Do you take any natural immune boosters, such as garlic, yogurt, herbs like oregano and olive leaf extract and spices like turmeric and ginger? If not, there are people on this site very well versed in the use of these natural healers. I highly recommend asking if these members would re-post their list of what they take that has helped them so much. Kay Re: Re: frequent sinus infectionsTo: bronchiectasis Date: Saturday, February 5, 2011, 7:11 PM hi Jona,It is generally considered part & parcel of bronch, along with arthritis & other inflammatory conditions.And because the sinuses drain downwards it naturally will spread to lungs -so, get a chest infx cleared, a sinus infx will re-infect lungs again. I had FESS (endoscopic sinus surgery) a couple of years ago and do a sinus saline flush every evening and now breathe much better but still do have coloured mucous from there, so I know it is Pseudomonas. I took a hint from someone on this site and sometimes add a few drops of vinegar to the flush (also bicarb) & sometimes that clears it.The flush mix I use is 2 parts salt to 1 part bicarb, I mix and store in glass jar; use about a half tspoon to 70-100 mls water. Add a few drops of vinegar if looking infected.I can send you an article to your private e-address, which clarifies a lot of these 'other' conditions which actually seem to be part of the package, if you wish, just let me know.cheers,joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2011 Report Share Posted February 8, 2011 Joy, You will be in my thoughts and prayers, I hope it goes well for you. You had asked me who I had seen at Mayo. In June I went to through the Asthma/Allergy Clinic and saw Dr. Rank and Dr. Fox. In Sept. I went through the Pulmonary Clinic and saw Dr Mullon, than went back in Dec. and saw Dr. Darlene only because Dr. Mullon was out of town but she consulted with him on the phone while I was there. Who do you see up there and are you being hospitalized at Mayo? Did I see you are from WS, how about those Packers, we are big Packer fans. Great game!! Take CareTo: bronchiectasis Sent: Tue, February 8, 2011 2:06:57 PMSubject: Re: Re: Hospital I have to go to the hospital tomarrow for ten days. Not sure what they called it I have but I need to take strong antibiotics for ten days. Not looking forward to it. Joy L From: Joy Subject: Re: Re: frequent sinus infectionsTo: bronchiectasis Date: Saturday, February 5, 2011, 7:11 PM hi Jona,It is generally considered part & parcel of bronch, along with arthritis & other inflammatory conditions.And because the sinuses drain downwards it naturally will spread to lungs -so, get a chest infx cleared, a sinus infx will re-infect lungs again. I had FESS (endoscopic sinus surgery) a couple of years ago and do a sinus saline flush every evening and now breathe much better but still do have coloured mucous from there, so I know it is Pseudomonas. I took a hint from someone on this site and sometimes add a few drops of vinegar to the flush (also bicarb) & sometimes that clears it.The flush mix I use is 2 parts salt to 1 part bicarb, I mix and store in glass jar; use about a half tspoon to 70-100 mls water. Add a few drops of vinegar if looking infected.I can send you an article to your private e-address, which clarifies a lot of these 'other' conditions which actually seem to be part of the package, if you wish, just let me know.cheers,joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2011 Report Share Posted February 11, 2011 good luck Joy, you may find you feel a whole lot better after the abx, and can manage maintenance physio more easily. 10 - 14 days IV abx is quite standard for bronch, usually two or 3 together to really give it a hit. Here's to much improved health and energy after your stay! cheers Joy H Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 I am in the hospital. I came in of Friday and hope to go home tomorrow. I lost two pints of blood, but they don't know where it came from. I am on the same floor as Pulmonary. All the rooms are filled. A lot of sick people so I will be glad to get home. It is so easy to pick up bad germs. Joy L Subject: Re: nw pathogensTo: bronchiectasis Date: Monday, June 6, 2011, 12:18 PM as of this minute, all seem under control. see me tomorrow, who knows. I never get rid of the MAC, but looking into the drug someone mentioned starting with a Z. I couldn't handle to 18 months med previously. maybe psa comes back often, or I never really get rid of it. e coli gone. not open day goes by that I don't cough up a pea sized green sputum. was cupfuls, so I'll take this. the thing is, I can never account for the times I get really out of breath. what I can do one day, maybe not the next, then ok. Joan Re: nw pathogens hi Joan,Macro bacterium avian - related of avian flu? Psa = Pseudomonas aeruginosa, I thought E coli was more a hand-to-mouth thing... yes, interesting - but hope it's not making you ill!Am discovering (?) differences in terms such as "colonisation", "infection", that some of the stuff that turns up isn't always pathogenic (the stuff that makes us ill).Where I'm puzzled is eg Psa - is colonizes, and we get lung infx as a result ....?? Or has the stress of moving sozzled my brain. My carer seems to think so today...joy No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1382 / Virus Database: 1511/3684 - Release Date: 06/06/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2011 Report Share Posted June 6, 2011 Dear Joy, My best wishes for a speedy recovery...hope you get to go home very soon. I'm back on the OPC3 and my supplements; the arthritis pain has lessened a little. It takes time. EILEEN Subject: Re: nw pathogensTo: bronchiectasis Date: Monday, June 6, 2011, 12:18 PM as of this minute, all seem under control. see me tomorrow, who knows. I never get rid of the MAC, but looking into the drug someone mentioned starting with a Z. I couldn't handle to 18 months med previously. maybe psa comes back often, or I never really get rid of it. e coli gone. not open day goes by that I don't cough up a pea sized green sputum. was cupfuls, so I'll take this. the thing is, I can never account for the times I get really out of breath. what I can do one day, maybe not the next, then ok. Joan Re: nw pathogens hi Joan,Macro bacterium avian - related of avian flu? Psa = Pseudomonas aeruginosa, I thought E coli was more a hand-to-mouth thing... yes, interesting - but hope it's not making you ill!Am discovering (?) differences in terms such as "colonisation", "infection", that some of the stuff that turns up isn't always pathogenic (the stuff that makes us ill).Where I'm puzzled is eg Psa - is colonizes, and we get lung infx as a result ....?? Or has the stress of moving sozzled my brain. My carer seems to think so today...joy No virus found in this message.Checked by AVG - www.avg.comVersion: 10.0.1382 / Virus Database: 1511/3684 - Release Date: 06/06/11 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2011 Report Share Posted June 9, 2011 hi Joy how are you going? . How did you lose blood - where was the bleed? Having no rooms n the hospital is same here quite often. hope you're up and about soon... hugs, joy h Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2011 Report Share Posted June 11, 2011 hi Joy, my lungs bled - just started like I was coughing up the usual... but quite bright red, and quite a large amount, the cough w/ blood continued same for about 2 hours then lessened and finally stopped after 5 hrs. Advised I go to hospital next day (middle of Easter long w/e..) only in ED for obs, x-rays, pathology etc etc... til decided I was ok to go home. I was already on IV Timentin anyway at the time, which had been organised to have at home. This " hospital in the home " sounds great, but is a bit much to have to drive self to and from hospital to do portacath hook-up, back a wk later change hook, back again to remove it when finished... Am now waiting again to repeat the whole performance later this week... (sigh) cheers, joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2011 Report Share Posted June 14, 2011 Hi Joy, glad to be home again. I was losing blood through the bowel. I had two pints of blood transfusion. They have not found yet where it is coming from. I had to swallow a capsule yesterday. It has a camera in it and takes 80,000 pictures. The Doctor said it would take a week to look them over, so I won't know anything for a week and a half. Today they checked my blood count and it's starting to come back up. Next week I go back and they are going up the bottom end and check my pouch out. I have a Jpouch on the inside. I sure will be glad when they get to the bottom of it. Thanks for checking back with me and hope your doing good Joy L i To: bronchiectasis Sent: Thu, June 9, 2011 10:49:12 PMSubject: Re: Hospital hi Joyhow are you going? . How did you lose blood - where was the bleed? Having no rooms n the hospital is same here quite often.hope you're up and about soon...hugs,joy h Quote Link to comment Share on other sites More sharing options...
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