Re: experiences

[Guest guest]

Hi joy.

If you can get your pulmo to prescribe the vest it would be a

wonderful asset to you. I have one and that has done wonders to keep

the mucous from settleing deep in my chest. It wont make it go away

completley but, it sure helps keep those infections away at least for a

little while.

And, when my doc did prescribe the vest I got it within just a few days.

The Hillroom corporation who manufactures the vest is wonderful to work

with. I was also unable to get my insurance company to pay for it. But,

The company had a program in which I qualified and it was paid for.

It would have cost me $1,600 to purchase this very important piece of

equipment. But, I would be lost without it.

nyzki

[Guest guest]

Joy

I frequently get a positive result for pseudo in test results. There a number of people in this group who also have pseudo.

Keep well everyone. Theresa

Subject: Re: experiencesTo: bronchiectasis Date: Tuesday, April 29, 2008, 10:01 AM

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 ------------ -- From: joy hensby <endiandraixa (DOT) net.au>

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.australiandocto r.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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.

[Guest guest]

Joy

I frequently get a positive result for pseudo in test results. There a number of people in this group who also have pseudo.

Keep well everyone. Theresa

Subject: Re: experiencesTo: bronchiectasis Date: Tuesday, April 29, 2008, 10:01 AM

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 ------------ -- From: joy hensby <endiandraixa (DOT) net.au>

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.australiandocto r.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

Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.