Re: portacath & using 'vest'

[Guest guest]

hi Suzanne,

and all the others ....  I've been reading the posts re pulmozyme with great interest.  I'd be interested to know if anyone in Australia has heard of it being used, I certainly haven't.Your comment Suzanne, about how things are paid for is so true, so very true.  It also affects what is available, eg I was only put on Tobramycin nebs after Gentamicin 4-5 times , is hugely toxic & some frightening side-effects - but it's lots cheaper.  We don't get Tobi in Australia as far as I know (maybe only for CF).   I am thankful expensive meds are small $ if on govt rating, but there are meds not available.  I had  my portacath "hooked up" last Thurs for Timentin IV, my carer was shown how to do it (far simpler than for a PICC). Come Friday, oops - undid the wrong bit, blood everywhere!  Managed to get it done ok, but was a bit alarming. The hospital sent a community nurse out today - Saturday - and watched us do it again - all ok this time.  Having a nurse come out on a w/e was  asurprise though.  I'm on Tobramycin nebs (no  Tobi available) 2 x day for 2 wks.  Hopefully I'll start getting some energy back soon - have to get back to house-hunting and legal stuff to do with being left in a flooded house.RE using SmartVest (jacket comes to like a low-ish cut top) with a portacatch implant in chest on bra-line.Has anyone used their 'vest' (whichever) with a portacath - does anyone else have/has had a portacath implant? (there are other types but same thing, an implant under the skin). cheers all, joy h (Oz)

[Guest guest]

Hi Joy

I used Pulmozyn in hospital last year. I was in the CF ward & a CF patient was in with me. We used the hypertonic saline first & then the Pulmozyn. I suppose it worked. I inhaled it twice daily.

As far as I know Tobi is not available in Aus.

My specialist has referredme to a rheumatoligist as he thinks I have rheumatoid arthritis. He says the rheumatoid arthritis can cause lung disease. He is extremely thorough. He has reduced my Seretide to 1 puff twice a day. I'm not getting the side effects now.

Keep well everyone. Theresa

Subject: Re: portacath & using 'vest'To: bronchiectasis Received: Friday, 15 April, 2011, 11:11 PM

hi Suzanne, and all the others .... I've been reading the posts re pulmozyme with great interest. I'd be interested to know if anyone in Australia has heard of it being used, I certainly haven't.

Your comment Suzanne, about how things are paid for is so true, so very true. It also affects what is available, eg I was only put on Tobramycin nebs after Gentamicin 4-5 times , is hugely toxic & some frightening side-effects - but it's lots cheaper. We don't get Tobi in Australia as far as I know (maybe only for CF). I am thankful expensive meds are small $ if on govt rating, but there are meds not available.

I had my portacath "hooked up" last Thurs for Timentin IV, my carer was shown how to do it (far simpler than for a PICC). Come Friday, oops - undid the wrong bit, blood everywhere! Managed to get it done ok, but was a bit alarming. The hospital sent a community nurse out today - Saturday - and watched us do it again - all ok this time. Having a nurse come out on a w/e was asurprise though. I'm on Tobramycin nebs (no Tobi available) 2 x day for 2 wks. Hopefully I'll start getting some energy back soon - have to get back to house-hunting and legal stuff to do with being left in a flooded house.

RE using SmartVest (jacket comes to like a low-ish cut top) with a portacatch implant in chest on bra-line.

Has anyone used their 'vest' (whichever) with a portacath - does anyone else have/has had a portacath implant? (there are other types but same thing, an implant under the skin).

cheers all,

joy h (Oz)

[Guest guest]

I don't think I've read before that rheumatoid arthritis can cause lung disease. Did the doctor mention how these two things are connected? I would be curious to know!

My specialist has referredme to a rheumatoligist as he thinks I have rheumatoid arthritis. He says the rheumatoid arthritis can cause lung disease. He is extremely thorough. He has reduced my Seretide to 1 puff twice a day. I'm not getting the side effects now.

[Guest guest]

The most common arthritic disease that causes lung problems is Wegener's

Disease. It's pretty rare but I do know two people who have it - one is in my

pulmonary rehab group and he just got a kidney transplant a few months ago.

Suzanne

[Guest guest]

h Theresa,

I asked about using Pulmozyne this time, but still on the usual

Timentin IV (have portacath now, not sure if anyone else uses the

vest if have one... does anyone else even have a portacath or

similar implant...?) & Tobramycin nebs.

Been more than 1 week, not feeling much better but maybe cos so

stressed out knwoing we're to be evicted so soon, and still nowhere

to go - LOADS of units, ALL the same, crammed together, stuffy, hot

as hades, houses not much better or tooo big with pools which adds

another $100/wk approx. ALL hugelly expensive for what they are...

Just hoping .... sort of praying .... anyone up there??? Please!

joy h (Oz, soon to be homeless..)

[Guest guest]

Hi Joy,

I inhale 7mL of Tobramycin twice daily for the first 15 days a month but have never had a portacath. I have had quite a few picc lines. How long will you need the portacath? Every time I am in the hospital with pseudomonas pneumonia for two weeks I have a picc line as I have bad veins for IVs in the arm. I have never heard of Timentin IV. They usually put me on Zosyn IV or Azactam in the hospital. Zosyn IV gives me terrible diarrhea so now they use Azacstam.

I know how difficult this must be for you with your housing situation in addition to not feeling well. I will keep you in my prayers for a good solution to your housing problem and feeling better soon.

Norma

To: bronchiectasis Sent: Sun, April 24, 2011 12:57:03 AMSubject: Re: portacath & using 'vest'

h Theresa,I asked about using Pulmozyne this time, but still on the usual Timentin IV (have portacath now, not sure if anyone else uses the vest if have one... does anyone else even have a portacath or similar implant...?) & Tobramycin nebs.Been more than 1 week, not feeling much better but maybe cos so stressed out knwoing we're to be evicted so soon, and still nowhere to go - LOADS of units, ALL the same, crammed together, stuffy, hot as hades, houses not much better or tooo big with pools which adds another $100/wk approx. ALL hugelly expensive for what they are...Just hoping .... sort of praying .... anyone up there??? Please!joy h (Oz, soon to be homeless..)

[Guest guest]

Hi Joy,

My prayers for you are that your will get better soon and find better living conditions. I have only had a pic line never a portacath but some of my students and friends have had protacaths. Can you still use your vest?

Cindi W

To: bronchiectasis Sent: Sun, April 24, 2011 12:57:03 AMSubject: Re: portacath & using 'vest'

h Theresa,I asked about using Pulmozyne this time, but still on the usual Timentin IV (have portacath now, not sure if anyone else uses the vest if have one... does anyone else even have a portacath or similar implant...?) & Tobramycin nebs.Been more than 1 week, not feeling much better but maybe cos so stressed out knwoing we're to be evicted so soon, and still nowhere to go - LOADS of units, ALL the same, crammed together, stuffy, hot as hades, houses not much better or tooo big with pools which adds another $100/wk approx. ALL hugelly expensive for what they are...Just hoping .... sort of praying .... anyone up there??? Please!joy h (Oz, soon to be homeless..)

[Guest guest]

HI Joy

Why are you being evicted?

Keep well everyone. Theresa

Subject: Re: portacath & using 'vest'To: bronchiectasis Received: Saturday, 23 April, 2011, 10:57 PM

h Theresa,I asked about using Pulmozyne this time, but still on the usual Timentin IV (have portacath now, not sure if anyone else uses the vest if have one... does anyone else even have a portacath or similar implant...?) & Tobramycin nebs.Been more than 1 week, not feeling much better but maybe cos so stressed out knwoing we're to be evicted so soon, and still nowhere to go - LOADS of units, ALL the same, crammed together, stuffy, hot as hades, houses not much better or tooo big with pools which adds another $100/wk approx. ALL hugelly expensive for what they are...Just hoping .... sort of praying .... anyone up there??? Please!joy h (Oz, soon to be homeless..)

[Guest guest]

Yes, I'm sure the stress is stressing out your whole body, Joy! Would that I could help you find housing. With our housing crisis (and I do mean crisis) owners who move have taken to renting instead of selling since home prices are so very low right now. I'm thinking of you all the time!

Kay Re: portacath & using 'vest'

h Theresa,I asked about using Pulmozyne this time, but still on the usual Timentin IV (have portacath now, not sure if anyone else uses the vest if have one... does anyone else even have a portacath or similar implant...?) & Tobramycin nebs.Been more than 1 week, not feeling much better but maybe cos so stressed out knwoing we're to be evicted so soon, and still nowhere to go - LOADS of units, ALL the same, crammed together, stuffy, hot as hades, houses not much better or tooo big with pools which adds another $100/wk approx. ALL hugelly expensive for what they are...Just hoping .... sort of praying .... anyone up there??? Please!joy h (Oz, soon to be homeless..)

[Guest guest]

hi all,

have had portacath nearly a year - apparently can be left 3-4 years.

Post house-flooding, lung infx, during Easter had a 5-hour bleed sev

nights ago, 7 hrs in ED.

Am very unwell, still have eviction getting ever closer.

must go,

joy

[Guest guest]

Oh, my precious friend, my heart aches for you. Was it your lungs bleeding, do you mean? How frightening that must have been. Has your vest become less useful at keeping your lungs clear? I hope not. Let us know how you're doing and we will keep you in our prayers and thoughts, Joy.

Love, Kay

Re: portacath & using 'vest'

hi all,have had portacath nearly a year - apparently can be left 3-4 years.Post house-flooding, lung infx, during Easter had a 5-hour bleed sev nights ago, 7 hrs in ED.Am very unwell, still have eviction getting ever closer.must go,joy

[Guest guest]

Joy...I am admittedly not a religious woman, but I will say many prayers foryour comfort. You have more going on than anyone shouldexperience in an entire lifetime. You have amazing inner strengththat I read coming from your words so often. We all feel likeyour family, and we all hurt with you. I have a spare bedroom,here in Orlando, FL. and with only 1 child, we have a verycalm, quiet home. Sad, but true. You don't even need tobring your vest motor, we have one! Just bring your ownpersonal snap-on vest, Sammy would be happy to share! -eFrom: Joy

Subject: Re: portacath & using 'vest'To: bronchiectasis Date: Thursday, April 28, 2011, 1:31 AM

hi all,

have had portacath nearly a year - apparently can be left 3-4 years.

Post house-flooding, lung infx, during Easter had a 5-hour bleed sev

nights ago, 7 hrs in ED.

Am very unwell, still have eviction getting ever closer.

must go,

joy

[Guest guest]

e,

I have often thought of this myself, but economic circumstances prevent me from acting on this thought. What a generous thing for you to offer! Now, Joy, treasured friend, PLEASE take e up on her blessed offer. Florida is very warm like your Australia and you would have the chance to heal, as well as to rest your tired body in a safe and water-free environment.

Here is the chance you need for a better life!

Kay Re: portacath & using 'vest'To: bronchiectasis Date: Thursday, April 28, 2011, 1:31 AM

hi all,have had portacath nearly a year - apparently can be left 3-4 years.Post house-flooding, lung infx, during Easter had a 5-hour bleed sev nights ago, 7 hrs in ED.Am very unwell, still have eviction getting ever closer.must go,joy

[Guest guest]

Joy - I am sending prayers your way. I am so sorry you have to deal with all your housing problems on top of your bronch. It was very generous and so nice of e to offer a bedroom to you........what a kind heart. I hope you are on very strong antibiotics to knock the infection out of your system. You are in our thoughts and prayers.

Sharyn

To: bronchiectasis Sent: Thu, April 28, 2011 12:31:14 AMSubject: Re: portacath & using 'vest'

hi all,have had portacath nearly a year - apparently can be left 3-4 years.Post house-flooding, lung infx, during Easter had a 5-hour bleed sev nights ago, 7 hrs in ED.Am very unwell, still have eviction getting ever closer.must go,joy

[Guest guest]

hi Theresa

aaah what a question - yeah, why??? We woke one morning with one

room 1/4 flooded .... several days later another room, then the

next .... 3 weeks night and day soaking, mopping up with towels;

rinse/spin and try to dry in pouring rain weather.... lots sleep

deprivation... Every plea for assistance ignored ...

We approached RTA for advice, she retaliated by evicting us (minimum

time she could give was 2 mths, she tells others she was being

generous!) I got sick (how unusual - the place was rank with rotting

carpets), had " hospital in the home " (LOL really), not restful. Feel

like getting nowhere, been to every govt accomm aid, looked on

realestate.com internet etc ... missed out on one that would have

been that absolute perfect - but we didn't find it until Easter,

someone already had an application in before Easter perhaps. And I

slept in

what did we do wrong!!! (just got the wrong land 'lady' I guess....)

how's things for you Theresa, sorry didn't give you a call, life

hasn't been normal for what seems ages and ages....

but cheers anyway

joy

[Guest guest]

thank you Kay, really, thank you

joy h

[Guest guest]

I did slow up on vest and nebs but started on gentler settings soon

after still working good, but think I have a slow semi-permanent

bleed. I seem to get spontaneous bleeds spots on my skin - maybe

from the heparin flush used to patent the line? (same as in PIC line),

after 1 am, time for bed...

night all,

and pls do forgive me if I miss anyone's posts, just not enough

hours, night or day...

hugs

joy

[Guest guest]

The thanks are to you Joy. I was glad to see your posts this morning, since after your last post of a few days ago I was very worried about your health!

Yes, it will have to work out, eventually.

Kay Re: portacath & using 'vest'

thank you Kay, really, thank youjoy h

[Guest guest]

Did any of the doctors have an idea of what might cause the bleeds?

Kay Re: portacath & using 'vest'

I did slow up on vest and nebs but started on gentler settings soon after still working good, but think I have a slow semi-permanent bleed. I seem to get spontaneous bleeds spots on my skin - maybe from the heparin flush used to patent the line? (same as in PIC line),after 1 am, time for bed...night all,and pls do forgive me if I miss anyone's posts, just not enough hours, night or day...hugsjoy

[Guest guest]

I get those bleed spots on my arms when I lift weights and when I do yard work. Mine are most likely a combination of the prednisone I'm taking (down to 2mgs daily as of tomorrow and will be off of it in 3 weeks!!), and age. Sent from my iPadSuzanne R Brown

Did any of the doctors have an idea of what might cause the bleeds?

Kay Re: portacath & using 'vest'

I did slow up on vest and nebs but started on gentler settings soon after still working good, but think I have a slow semi-permanent bleed. I seem to get spontaneous bleeds spots on my skin - maybe from the heparin flush used to patent the line? (same as in PIC line),after 1 am, time for bed...night all,and pls do forgive me if I miss anyone's posts, just not enough hours, night or day...hugsjoy