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« on: July 16, 2008, 04:48:07 AM »
RUNAWAY - 3 DOORS DOWN
 
Do you ever think about running away
'cause i was thinkin' about leavin' today
We'll follow forever where our hearts wanna go
Maybe we'll live somewhere where nobody knows our names
Then things might change for the good

I wanna be somewhere so far away
To lie under the night at the end of another good day
I can't tell you how long we'll be gone
But as long as we're together then forever's never too long
Too long, oh no

Do you ever think about not comin' back
Hoppin' on a train and we'll burn up the tracks
We'll jump off somewhere that we don't know how to say
Maybe hitch a ride from someone who can tell us the way
To where these things might change for the good

I wanna be somewhere so far away
To lie under the night at the end of another good day
I can't tell you how long we'll be gone
But as long as we're together then forever's never too
Where forever is never too long
Not with you right here by me
Maybe, maybe we'll just see
Where this road will lead for us

I wanna be somewhere so far away
To lie under the night at the end of another good day
I can't tell you how long we'll be gone
But as long as we're together then forever's never too
I wanna be somewhere so far away
To lie under the night at the end of another good day
I can't tell you how long we'll be gone
But as long as we're together then forever's never too
Forever is never too long

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Kathy11

Re: .....
« Reply #1 on: July 17, 2008, 01:09:19 AM »
These lyrics are fantastic.
Thank-you for the author
Kathy

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Kathy11

Re: .....
« Reply #2 on: July 17, 2008, 01:35:28 AM »
The charity, the National Confidential Enquiry into Patient Outcome and Death, carried out the research into the deaths of 55 patients with sickle disease or the related condition thalassaemia.

Of 19 patients in the study who had complained of pain and who subsequently died in hospital, nine had been given excessive doses of painkillers and five of those patients died because of complications due to overdose.

The report "A Sickle Crisis?" also found the cause of death of some patients was unclear.

  Doctors and nurses need to be more familiar with what needs to be done if patients' vitals signs become abnormal

Dr David Mason, study author

Professor Sebastian Lucas, one of the study authors, said: "We were surprised that our review found such a high number of cases where we did not know the actual cause of death.

"This is a wake-up call to the clinical community. Sickle cell disease is as common as cystic fibrosis, yet less is known about the severe complications that can lead to death in sickle cell disease patients."

The report also found the take-up of vaccinations by sickle cell disease patients at their GP practice was low.

Dr David Mason, co-author of the study, said: "Doctors and nurses need to be more familiar with what needs to be done if patients' vitals signs become abnormal.

"We need a multidisciplinary approach to acute pain management and regular reviews of therapy to control pain adequately."

People it affects

Around 12,000 people in the UK have sickle cell disease and it is one of the most common reasons for hospital admissions.

Sickle Cell mainly affects people of Afro-Caribbean, African, Eastern Mediterranean, Middle East and Asian origins. Thalassaemia mainly affects people from Asia, the Mediterranean and the Middle-East.

The demographics of where patients live have changed. At one time sickle cell disease was mostly found in London and the West Midlands, but it is now across the UK.

 A Painful Condition
Sickle cell anaemia patients carry abnormal haemoglobin in their red blood cells
Normal red blood cells are doughnut-shaped and can bend and flex and travel easily along the narrowest of blood vessels
Those carrying sickle haemoglobin have a sickle shape destroying the cells' natural flexibility, making them less able to squeeze through small blood vessels
This can lead to blockages in the vessels, preventing oxygen from getting through to the tissues and causing severe pain and damage to the organs
When a blood vessel becomes blocked this can trigger an attack of pain know as a crisis.

Dr Mason said "We need a supporting health network from GP practice to hospitals to expert centres, to ensure that their care is managed well regardless of where they are in the UK."

Professor Lucas said it is now vital to set up the national database of sickle and thalassaemia patients proposed by the Department of Health because of the scale of the problem.

"Only when we have this framework for the uniform collection of clinical and outcome data, can we then audit patient outcomes and treatments.

"Then we will understand the disease better and so improve the management and quality of acute and chronic care."

Dr Asaah Nkohkwo, chief executive of the Sickle Cell Society helped with the NCEPOD study.

He said: "I am appalled by the findings. They show how much of a gap exists in the delivery of the care services for sickle cell patients including the lack of knowledge of health professionals and the consequences that families affected have had to face as revealed by the autopsy reports."

Dr Nkohkwo said the research has been used in the development of the NHS standards of care document for adults with sickle cell disease which is being launched at the House of Commons next month.



The source:  below


 

RELATED BBC LINKS

RELATED INTERNET LINKS
NCEPOD
Sickle Cell Society
UK Thalassaemia Society
NHS Direct
Department of Health
The BBC is not responsible for the content of external internet sites


I think this will make good reading material  for sufferers of sickles cells.
Kathy


 

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Offline Manal

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Re: .....
« Reply #3 on: July 17, 2008, 02:55:08 AM »
Hi Kathy :hugfriend

Does blood transfusion or replacement is a possibility for you to prevent the crisis?????

manal

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Kathy11

Re: .....
« Reply #4 on: July 17, 2008, 08:06:45 AM »
To Maiki.
Thank=you I will e-mail you.

Manal  How can I get treatment if the doctors DO NOT acknowledge that I have a problem,

Ok when I visit the doctor ,she measure my bloodpressure.while I rant and rave about my pain here and there go through one of her ears and through the other.the same old same old all the times.then she has the audacity to tell me she is trying hard to keep me alive.
If I was not aching and suicidale it would be funny its like a comedy.
beween the GPand the pshychiatric   if I allow them, they   would have medicated  me to the eye ball   but I know better thank god I have an insight in the medical world I was a nurse for 28yrs I know whats goes on.
A drugged human being have no sense, she would not know the difference.
Then no one will be accountable.

They are not undestanding the crisis which is cause by my sickle cells.

I hope I make sense,

I am gratefull I have this forum to express myself and so many special caring friends, it warmth my heart I'm humble thank-you to all of you.
Kathy

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Offline Manal

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Re: .....
« Reply #5 on: July 17, 2008, 11:57:29 PM »
Kathy cann't the blood electrophoresis show them that there is a percentage of sickle cell blood!!??

manal

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Offline Zaini

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Re: .....
« Reply #6 on: July 18, 2008, 05:33:49 AM »
Quote
Do you ever think about running away
'cause i was thinkin' about leavin' today

Yeah , now a days most of the times i think about running away,away somewhere ,where there is peace,no weapons and no threats from US that there are chances of taking military action with in Pakistan ( no offence to US citizens),i don't know what other people think but i just read the news in paper and it took my breath away,it scares me like hell,i've seen afghanistan and iraq and i don't wanna go back in stone age like them,i can't even imagin how we would be able to get medical attention my daughter needs every month,if any such thing happens,IF we'll be alive.

As if there is nothing important then taking military actions and waging wars in the world,why can't we all just try to find ways to make this world a better place for every one.

Iam really sorry for this nonsense,didn't mean to offend any one,but i am SCARED.

ZAINI.
^*^Xaini^*^

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Kathy11

Re: .....
« Reply #7 on: July 18, 2008, 08:08:59 AM »
Hi Manal.
It has been nine years since my blood result has been know to be Sickle cells and thal minor.
I've been going back and from the doctor many many times,
I have been having countless health related issues

It is as if the doctor is waiting for me to die.I'm tired of going to doctors after doctor and they turn a blind eye.

One doctor told me she has a medical Manuel .so she didn't need me to tell her how to treat me.
another one told me she could not change my biological make up

My pyschiatric explain my situation in( physiology term)  still no one is doing anything worth while
they are not even addressing the pain management issues. :banghead :banghead :banghead :banghead :banghead :banghead

I'm sure everyone else is tired of hearing my search for a reasonable management for my current health problem  because I'm tired of myself ??? ???


They are all very nice as a human being but no one is helping   I'm going crazy with fustration
kathy

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Kathy11

Re: .....
« Reply #8 on: July 18, 2008, 08:19:20 AM »
Hi Zaini
Dont ever apologize for your feeling you are right there are no place to hide Those head of states make decission and we the civillian sufferes, :mad :mad

Its creates uncertainty and fear in societies everywhere.

I feel that i need a magnifying glass to see something good these days   everywhere is the same lots of crime and unrest and people are losing thier mind.

I can undestand your fear and uncertainty. :flowers

At times we have to say as it is.
Kathy

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Offline Andy Battaglia

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Re: .....
« Reply #9 on: July 18, 2008, 03:48:41 PM »
Zaini,

I agree completely. I just wish more of my countrymen did. The US is definitely not making the world a safer place.
Andy

All we are saying is give thals a chance.

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Offline nice friend

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Re: .....
« Reply #10 on: July 18, 2008, 08:27:02 PM »
we cant runawaya ;;
it was a great peacefull world we made it bad place and we cant runaway to our selves .. all wat we can do is  .. take a deep look of ourselve and try to chose the right path .. being humble and kind, will lead us to that right path .. this world is our shadow our reflection if we r wrong the world is wrong if we r right the world will look fine .. if u want peace then u have to set the peace in ur mind .... we need only PEACE OF MIND ...
« Last Edit: July 19, 2008, 07:50:28 PM by nice friend »
Sometimes , God breaks our spirit to save our soul.
Sometimes , He breaks our heart to make us whole.
Sometimes , He sends us pain so we can be stronger.
Sometimes , He sends us failure so we can be humble.
Sometimes , He sends us illness so we can take better care of our selves.
Sometimes , He takes everything away from us so we can learn the value of everything we have.

===========
Umair

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Offline Manal

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Re: .....
« Reply #11 on: July 19, 2008, 02:37:13 AM »
Kathy, i am really sorry that you have to pass through all of this, but please keep searching for other doctors who can listen to you. I know talking is easy, but don't give up because it is your right.

I know that here in my country, hydroxyurea is taken to avoid the pain crisis.

Please update us

manal

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Offline Manal

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Re: .....
« Reply #12 on: July 19, 2008, 02:38:57 AM »
Zaini, i can understand your feelings and you have all the right, may God save us all

manal

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Offline Zaini

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Re: .....
« Reply #13 on: July 19, 2008, 06:34:46 PM »
Thanks Kathy,Umair,Manal and specially Andy,

It gives me a little hope when US citizens talk positively and understand the situation,it gives me hope when i watch US citizens protesting against Iraq war and violence,on the other hand our own govt is full of thieves.I wish these threats will remain only threats.

ZAINI.
^*^Xaini^*^

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Offline Sharmin

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Re: .....
« Reply #14 on: July 19, 2008, 06:44:12 PM »
Hi Zaini,

I can only imagine what you must be going through - us North Americans are sometimes sheltered from much of what citizens of other countries go through.  Thank you for opening our eyes to it.  I hope for peace for your country. 

Sharmin
Sharmin

 

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