Re: [bronchfriends] sorry but bronch doesn,t always have to mean TERMINAL---

[Guest guest]

Well all I am again opening my digest and see a few friends writing-- just thought I would pay a quickish visit and well perhaps tell all.

I have been like you Lee, in a hell of a lot of pain, and the discomfort has almost cost me my life a few times in past 12 months really.

I have never recovered from the operation I had last June.

Major problems with huge hernias from deep under the right side of the wound- just above where my batteries are implanted too.

NOW a year and 2 months after we found the hernia, and being let go for so long its now almost impossible to operate far too risky to my LIFE.

My op has been put off 4 times- because of lack of beds, lack of surgeons, lack of specialised anesthetist etc.

Have been referred to 2 big Bris hospitals, and now finally one will do something-- however they refuse to do the first choice op-- too big, too risky- and they are just not prepared to do it.

I left in a flood of tears and pain-- as my body now is so mis shapen looks like I have had a baby and its tucked under my skirt and tops etc, all a big wobbly, lumpy bundle.

7 inch in length and 6 1/2 inch depth across my right abdomen--

Skirts won,t stay up, tops won,t hide, undies too hard to wear-- bra sits under it and cuts to hell.

OH well, they have decided after 10 hrs hagglng with me, 2 surgeons called me back and will get rid of the unsightly lumps, may or may not help alleviate some of the added spinal pressure.

May assist a little with my worse than ever breathlessness- caused by hernia pushing my liver and lungs up , and across, causing heart to flutter too.

WON<T help with all the bowel trouble the thing has caused cos they punctured that last op. won,t help the fact I cannot a meal bigger than that of a 6 month old.

NOT allow me to eat fruit and veg-- so not a lot will change- other than shape.

BUT will definitely allow me to walk and swim again, and do some excersise, which in turn SHOULD help my R/A etc

They will do 2 key hole ops from other side, so not to threaten me with a huge infection where the batteries are and if they were to try and re open the wound.

That’s what they had intended BUT its 11 inches long and 4 cms wide-- with a twisted bowel under it.

Too long an op, too many potential risks and was to be on life support a week or so.

NOW just waiting again to be admitted.

They did all the tests etc while in there last visit with all the top people-- I feel my life has almost been totally ruined by the incompetence of the surgeons etc

They themselves said to me there is so many issues, because they botched things up good and proper-- also said a definite case for suing--

Oh god who would want to bother???????? another 5 years of my life-- forget it-- BUT my kids might if they botch this next one up.

They say mid Jan now.

Still drink tea, BUT no not herbal-- gives my bowel hell-- NO not the great home grown vegs either-- NO fruit either-- just a couple of grapes or watermelon, rock melon etc.

but only what you would give a baby-- doubles me up with pain and then straight out.

I have lost heaps of weight everywhere else.

BUT put it on with this huge belly--- will be interesting how much of the fat built up by lack of movement etc I lose-- I am hoping that by only tiny ops , I will recover quick enough to enable me to swim and go for walks again.

My R/A. fibro, asthma, have all been dreadful-- worst in many years.

BUT still force myself to eat a bulb of garlic every other day-- to keep flu and infections away etc.

I double up, have loads of gas etc, and have to walk around in circles or sit for ages on loo to get relief.

I have to stop the garlic a week before the op.

NO fish oil caps etc either- none for almost a year-- so yep sweats and all that have returned --

my bronch has not showed up at all, well not that we see- doctors are amazed.

Pain and discomfort -- I still take PF-- 12 a day and 4 morphine-- under strict guidance--

Binds me one day and then well on loo for a week.

All caused by the punctured bowel etc.

I miss chatting with so many-- BUT I do get the occassional email from a few-- thanks , Lee and a those who get me on messenger.

I still run my groups, and have now opened up a peer run supported accommodation, and respite service for people with mental illness.

Its just wonderful-- surely keeps me from feeling sad and sorry for myself-- busy 16 hrs a day--- BUT it,s rewarding and the minute I stop-- well I sure know it.

Lee would understand--

I have 3 long term residents in upstairs a female and 2 males-- have group of up to 16 twice a week, and the ward program--

And 2 bed respite in flat downstairs-- all voluntary run by peers-- people on pensions- all have mental illnesses-- all study with me- attend community networking etc.

Our house was fully furnished by the local community---

I also run 2 programs for recovery online-- a Saturday social group and a Thursday evening dinner group- they call themselves the diners club--.

These are all people who either have mental illness and heaps of other illnesses, and some carers.

Some in the 23-25 yr age group some 34-45, then 55 to 78 ages.

Just amazing-- 4 couples -plus me- who also cook the meals for those in supported accomm--- 7 nights a week.

I monitor the meds and access to other services etc.

My carer helps run the group, he is now 69, had 4 mini strokes this year--now his spine has given way, and he again needs surgery on eyes too-- blind leading the blind lol.

I will be 62 or 3 in Feb-- and sadly my family have seemed to fall away a lot-- BUT they all do live close by and do phone etc.

All got families to keep up with etc.

AND they do know I must do what I do-- which takes up 5 full days a week and half of 6th-- or I would be dead-- 8 years ago at least, and again 3-4 times this past year--

Keep up your support.

Without it, you cannot really go on-- you need to share-- and support, listen, and hear--

Don,t be over critical, don,t judge, and be happy to accept people for who they are-- whatever they have wrong--- or right lol.

Have a lovely xmas--

Keep safe.

Remember bronch can be devastating and hideous-- BUT so are many other illnesses-- many kids live with worse and don,t complain- they just know they have to LIVE--

I picture my grandkids, my own kids every time I feel like its all too hard- and believe me that’s almost every day at least twice a day-- mornings-- I really do want to die- and its hell.

after I get into bed same-- fight it all night-- sorry , to say we must remember -we all do have inner strengths that do keep lifting you up- lifting you up enough to THINK of others-- their lives, what will they do if you are not here- do I want to see my grandkids crying , missing me, wondering all the what if,s and whys and be lonely for their nan.-- will my daughters fear going on in case they get as bad as I have got--OR do I want to take a look at my pics of all, and of my own mum-- whom I nursed till she passed away- my sis in her wheelchair-- have my carer help me IF he can to slide out of bed---and get up and get OUT-- see what my day is turning up- see who needs me most or indeed who gladly doesn,t need me there anymore--

Sandy ps 2 of my children's families have split up this past year-- so sad -- I hardly see them at all--- BUT the grandkids keep in touch by messenger-- I have 14- aged from 17 months to the oldest 18 next june--

[Guest guest]

Sandy, it is soooooo good to hear from you! After reading your update in my head I'm saying I will never complain again! You are an amazing, strong, compassionate woman. You give me strength, and I thank you for that. My prayers and positive thoughts are sent to you today, and my wish is the success for your upcoming operations....Seasons Greetings...and many, many more to come.

Namaste

Collis

Re: [bronchfriends] sorry but bronch doesn,t always have to mean TERMINAL---

Well all I am again opening my digest and see a few friends writing-- just thought I would pay a quickish visit and well perhaps tell all.

I have been like you Lee, in a hell of a lot of pain, and the discomfort has almost cost me my life a few times in past 12 months really.

I have never recovered from the operation I had last June.

Major problems with huge hernias from deep under the right side of the wound- just above where my batteries are implanted too.

NOW a year and 2 months after we found the hernia, and being let go for so long its now almost impossible to operate far too risky to my LIFE.

My op has been put off 4 times- because of lack of beds, lack of surgeons, lack of specialised anesthetist etc.

Have been referred to 2 big Bris hospitals, and now finally one will do something-- however they refuse to do the first choice op-- too big, too risky- and they are just not prepared to do it.

I left in a flood of tears and pain-- as my body now is so mis shapen looks like I have had a baby and its tucked under my skirt and tops etc, all a big wobbly, lumpy bundle.

7 inch in length and 6 1/2 inch depth across my right abdomen--

Skirts won,t stay up, tops won,t hide, undies too hard to wear-- bra sits under it and cuts to hell.

OH well, they have decided after 10 hrs hagglng with me, 2 surgeons called me back and will get rid of the unsightly lumps, may or may not help alleviate some of the added spinal pressure.

May assist a little with my worse than ever breathlessness- caused by hernia pushing my liver and lungs up , and across, causing heart to flutter too.

WON<T help with all the bowel trouble the thing has caused cos they punctured that last op. won,t help the fact I cannot a meal bigger than that of a 6 month old.

NOT allow me to eat fruit and veg-- so not a lot will change- other than shape.

BUT will definitely allow me to walk and swim again, and do some excersise, which in turn SHOULD help my R/A etc

They will do 2 key hole ops from other side, so not to threaten me with a huge infection where the batteries are and if they were to try and re open the wound.

That’s what they had intended BUT its 11 inches long and 4 cms wide-- with a twisted bowel under it.

Too long an op, too many potential risks and was to be on life support a week or so.

NOW just waiting again to be admitted.

They did all the tests etc while in there last visit with all the top people-- I feel my life has almost been totally ruined by the incompetence of the surgeons etc

They themselves said to me there is so many issues, because they botched things up good and proper-- also said a definite case for suing--

Oh god who would want to bother???????? another 5 years of my life-- forget it-- BUT my kids might if they botch this next one up.

They say mid Jan now.

Still drink tea, BUT no not herbal-- gives my bowel hell-- NO not the great home grown vegs either-- NO fruit either-- just a couple of grapes or watermelon, rock melon etc.

but only what you would give a baby-- doubles me up with pain and then straight out.

I have lost heaps of weight everywhere else.

BUT put it on with this huge belly--- will be interesting how much of the fat built up by lack of movement etc I lose-- I am hoping that by only tiny ops , I will recover quick enough to enable me to swim and go for walks again.

My R/A. fibro, asthma, have all been dreadful-- worst in many years.

BUT still force myself to eat a bulb of garlic every other day-- to keep flu and infections away etc.

I double up, have loads of gas etc, and have to walk around in circles or sit for ages on loo to get relief.

I have to stop the garlic a week before the op.

NO fish oil caps etc either- none for almost a year-- so yep sweats and all that have returned --

my bronch has not showed up at all, well not that we see- doctors are amazed.

Pain and discomfort -- I still take PF-- 12 a day and 4 morphine-- under strict guidance--

Binds me one day and then well on loo for a week.

All caused by the punctured bowel etc.

I miss chatting with so many-- BUT I do get the occassional email from a few-- thanks , Lee and a those who get me on messenger.

I still run my groups, and have now opened up a peer run supported accommodation, and respite service for people with mental illness.

Its just wonderful-- surely keeps me from feeling sad and sorry for myself-- busy 16 hrs a day--- BUT it,s rewarding and the minute I stop-- well I sure know it.

Lee would understand--

I have 3 long term residents in upstairs a female and 2 males-- have group of up to 16 twice a week, and the ward program--

And 2 bed respite in flat downstairs-- all voluntary run by peers-- people on pensions- all have mental illnesses-- all study with me- attend community networking etc.

Our house was fully furnished by the local community---

I also run 2 programs for recovery online-- a Saturday social group and a Thursday evening dinner group- they call themselves the diners club--.

These are all people who either have mental illness and heaps of other illnesses, and some carers.

Some in the 23-25 yr age group some 34-45, then 55 to 78 ages.

Just amazing-- 4 couples -plus me- who also cook the meals for those in supported accomm--- 7 nights a week.

I monitor the meds and access to other services etc.

My carer helps run the group, he is now 69, had 4 mini strokes this year--now his spine has given way, and he again needs surgery on eyes too-- blind leading the blind lol.

I will be 62 or 3 in Feb-- and sadly my family have seemed to fall away a lot-- BUT they all do live close by and do phone etc.

All got families to keep up with etc.

AND they do know I must do what I do-- which takes up 5 full days a week and half of 6th-- or I would be dead-- 8 years ago at least, and again 3-4 times this past year--

Keep up your support.

Without it, you cannot really go on-- you need to share-- and support, listen, and hear--

Don,t be over critical, don,t judge, and be happy to accept people for who they are-- whatever they have wrong--- or right lol.

Have a lovely xmas--

Keep safe.

Remember bronch can be devastating and hideous-- BUT so are many other illnesses-- many kids live with worse and don,t complain- they just know they have to LIVE--

I picture my grandkids, my own kids every time I feel like its all too hard- and believe me that’s almost every day at least twice a day-- mornings-- I really do want to die- and its hell.

after I get into bed same-- fight it all night-- sorry , to say we must remember -we all do have inner strengths that do keep lifting you up- lifting you up enough to THINK of others-- their lives, what will they do if you are not here- do I want to see my grandkids crying , missing me, wondering all the what if,s and whys and be lonely for their nan.-- will my daughters fear going on in case they get as bad as I have got--OR do I want to take a look at my pics of all, and of my own mum-- whom I nursed till she passed away- my sis in her wheelchair-- have my carer help me IF he can to slide out of bed---and get up and get OUT-- see what my day is turning up- see who needs me most or indeed who gladly doesn,t need me there anymore--

Sandy ps 2 of my children's families have split up this past year-- so sad -- I hardly see them at all--- BUT the grandkids keep in touch by messenger-- I have 14- aged from 17 months to the oldest 18 next june--

[Guest guest]

Dear Sandy, so happy to hear from you but so sad that you're so ill. I've been praying for you every night and I will still do it. is right, you are an amazing woman. With all your problems you are still helping others. Sandy, pls keep informing us of your progress. You're in my thoughts constantly.

To: bronchiectasis From: bcollis@...Date: Thu, 11 Dec 2008 10:07:39 -0500Subject: Re: Re: [bronchfriends] sorry but bronch doesn,t always have to mean TERMINAL---

Sandy, it is soooooo good to hear from you! After reading your update in my head I'm saying I will never complain again! You are an amazing, strong, compassionate woman. You give me strength, and I thank you for that. My prayers and positive thoughts are sent to you today, and my wish is the success for your upcoming operations....Seasons Greetings...and many, many more to come.

Namaste

Collis

Re: [bronchfriends] sorry but bronch doesn,t always have to mean TERMINAL---

Well all I am again opening my digest and see a few friends writing-- just thought I would pay a quickish visit and well perhaps tell all.

I have been like you Lee, in a hell of a lot of pain, and the discomfort has almost cost me my life a few times in past 12 months really.

I have never recovered from the operation I had last June.

Major problems with huge hernias from deep under the right side of the wound- just above where my batteries are implanted too.

NOW a year and 2 months after we found the hernia, and being let go for so long its now almost impossible to operate far too risky to my LIFE.

My op has been put off 4 times- because of lack of beds, lack of surgeons, lack of specialised anesthetist etc.

Have been referred to 2 big Bris hospitals, and now finally one will do something-- however they refuse to do the first choice op-- too big, too risky- and they are just not prepared to do it.

I left in a flood of tears and pain-- as my body now is so mis shapen looks like I have had a baby and its tucked under my skirt and tops etc, all a big wobbly, lumpy bundle.

7 inch in length and 6 1/2 inch depth across my right abdomen--

Skirts won,t stay up, tops won,t hide, undies too hard to wear-- bra sits under it and cuts to hell.

OH well, they have decided after 10 hrs hagglng with me, 2 surgeons called me back and will get rid of the unsightly lumps, may or may not help alleviate some of the added spinal pressure.

May assist a little with my worse than ever breathlessness- caused by hernia pushing my liver and lungs up , and across, causing heart to flutter too.

WON<T help with all the bowel trouble the thing has caused cos they punctured that last op. won,t help the fact I cannot a meal bigger than that of a 6 month old.

NOT allow me to eat fruit and veg-- so not a lot will change- other than shape.

BUT will definitely allow me to walk and swim again, and do some excersise, which in turn SHOULD help my R/A etc

They will do 2 key hole ops from other side, so not to threaten me with a huge infection where the batteries are and if they were to try and re open the wound.

That’s what they had intended BUT its 11 inches long and 4 cms wide-- with a twisted bowel under it.

Too long an op, too many potential risks and was to be on life support a week or so.

NOW just waiting again to be admitted.

They did all the tests etc while in there last visit with all the top people-- I feel my life has almost been totally ruined by the incompetence of the surgeons etc

They themselves said to me there is so many issues, because they botched things up good and proper-- also said a definite case for suing--

Oh god who would want to bother???????? another 5 years of my life-- forget it-- BUT my kids might if they botch this next one up.

They say mid Jan now.

Still drink tea, BUT no not herbal-- gives my bowel hell-- NO not the great home grown vegs either-- NO fruit either-- just a couple of grapes or watermelon, rock melon etc.

but only what you would give a baby-- doubles me up with pain and then straight out.

I have lost heaps of weight everywhere else.

BUT put it on with this huge belly--- will be interesting how much of the fat built up by lack of movement etc I lose-- I am hoping that by only tiny ops , I will recover quick enough to enable me to swim and go for walks again.

My R/A. fibro, asthma, have all been dreadful-- worst in many years.

BUT still force myself to eat a bulb of garlic every other day-- to keep flu and infections away etc.

I double up, have loads of gas etc, and have to walk around in circles or sit for ages on loo to get relief.

I have to stop the garlic a week before the op.

NO fish oil caps etc either- none for almost a year-- so yep sweats and all that have returned --

my bronch has not showed up at all, well not that we see- doctors are amazed.

Pain and discomfort -- I still take PF-- 12 a day and 4 morphine-- under strict guidance--

Binds me one day and then well on loo for a week.

All caused by the punctured bowel etc.

I miss chatting with so many-- BUT I do get the occassional email from a few-- thanks , Lee and a those who get me on messenger.

I still run my groups, and have now opened up a peer run supported accommodation, and respite service for people with mental illness.

Its just wonderful-- surely keeps me from feeling sad and sorry for myself-- busy 16 hrs a day--- BUT it,s rewarding and the minute I stop-- well I sure know it.

Lee would understand--

I have 3 long term residents in upstairs a female and 2 males-- have group of up to 16 twice a week, and the ward program--

And 2 bed respite in flat downstairs-- all voluntary run by peers-- people on pensions- all have mental illnesses-- all study with me- attend community networking etc.

Our house was fully furnished by the local community---

I also run 2 programs for recovery online-- a Saturday social group and a Thursday evening dinner group- they call themselves the diners club--.

These are all people who either have mental illness and heaps of other illnesses, and some carers.

Some in the 23-25 yr age group some 34-45, then 55 to 78 ages.

Just amazing-- 4 couples -plus me- who also cook the meals for those in supported accomm--- 7 nights a week.

I monitor the meds and access to other services etc.

My carer helps run the group, he is now 69, had 4 mini strokes this year--now his spine has given way, and he again needs surgery on eyes too-- blind leading the blind lol.

I will be 62 or 3 in Feb-- and sadly my family have seemed to fall away a lot-- BUT they all do live close by and do phone etc.

All got families to keep up with etc.

AND they do know I must do what I do-- which takes up 5 full days a week and half of 6th-- or I would be dead-- 8 years ago at least, and again 3-4 times this past year--

Keep up your support.

Without it, you cannot really go on-- you need to share-- and support, listen, and hear--

Don,t be over critical, don,t judge, and be happy to accept people for who they are-- whatever they have wrong--- or right lol.

Have a lovely xmas--

Keep safe.

Remember bronch can be devastating and hideous-- BUT so are many other illnesses-- many kids live with worse and don,t complain- they just know they have to LIVE--

I picture my grandkids, my own kids every time I feel like its all too hard- and believe me that’s almost every day at least twice a day-- mornings-- I really do want to die- and its hell.

after I get into bed same-- fight it all night-- sorry , to say we must remember -we all do have inner strengths that do keep lifting you up- lifting you up enough to THINK of others-- their lives, what will they do if you are not here- do I want to see my grandkids crying , missing me, wondering all the what if,s and whys and be lonely for their nan.-- will my daughters fear going on in case they get as bad as I have got--OR do I want to take a look at my pics of all, and of my own mum-- whom I nursed till she passed away- my sis in her wheelchair-- have my carer help me IF he can to slide out of bed---and get up and get OUT-- see what my day is turning up- see who needs me most or indeed who gladly doesn,t need me there anymore--

Sandy ps 2 of my children's families have split up this past year-- so sad -- I hardly see them at all--- BUT the grandkids keep in touch by messenger-- I have 14- aged from 17 months to the oldest 18 next june--

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[Guest guest]

Hi Sandy!

So good to hear from you – I have wondered, have you had the ops...were you recovering....? So sorry to hear you have to go thru so much....just tooooo much.

My own year has been a bit rocky, 3 visits in hospital for IV abx, and one for sinus+ surgery, now beginning to feel some hope return, the hypertonic is best thing since sliced bread, for me... I also had some extremely distressing ‘moments’ with Qld hlth – hospital and community, but have a wonderful, fabulous patient liaison officer who has been a totally staunch, ever patient and caring support – when I’m not in the middle of the stress bit I realise I have met some terrific people within the system this year – and some terrors too, thankfully, more of the former....

I can’t believe how much you do, with so many of your own health problems....truly amazing, well done you.... I wish I could manage a fraction of! But some stamina is returning, can actually manage to get ALL the way round the s’market without near collapse and having to leave before all done, getting 2-years back-log of ‘spring’ cleaning done, and the (very) hot humid weather isn’t even knocking me around as it has in past years....

So, I look forward to a hopefully continued – or at least stabilised – improvement (from wanting not to live any longer, it’s a HUGE improvement LOL!)

Being on dial-up I’m blocking my phone, so must close,

Be thinking of you and will write some more,

joy

[Guest guest]

Hi Joy,

I read the entries but don't write often. I do follow your progress (or lack thereof ) and am always sending good thoughts your way and am just so glad to hear you say you're feeling a bit better.. every bit helps!

Hang in there Sandy, what an outrage to have to go through so much to get help!

Kay Re: Re: [bronchfriends] sorry but bronch doesn,t always have to mean TERMINAL---

Hi Sandy!So good to hear from you – I have wondered, have you had the ops...were you recovering....? So sorry to hear you have to go thru so much....just tooooo much.My own year has been a bit rocky, 3 visits in hospital for IV abx, and one for sinus+ surgery, now beginning to feel some hope return, the hypertonic is best thing since sliced bread, for me... I also had some extremely distressing ‘moments’ with Qld hlth – hospital and community, but have a wonderful, fabulous patient liaison officer who has been a totally staunch, ever patient and caring support – when I’m not in the middle of the stress bit I realise I have met some terrific people within the system this year – and some terrors too, thankfully, more of the former....I can’t believe how much you do, with so many of your own health problems....truly amazing, well done you.... I wish I could manage a fraction of! But some stamina is returning, can actually manage to get ALL the way round the s’market without near collapse and having to leave before all done, getting 2-years back-log of ‘spring’ cleaning done, and the (very) hot humid weather isn’t even knocking me around as it has in past years.... So, I look forward to a hopefully continued – or at least stabilised – improvement (from wanting not to live any longer, it’s a HUGE improvement LOL!)Being on dial-up I’m blocking my phone, so must close, Be thinking of you and will write some more, joy