Thalassemia Patients and Friends
Discussion Forums => General Chatter => Topic started by: AstonDialo on July 16, 2008, 04:48:07 AM
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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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These lyrics are fantastic.
Thank-you for the author
Kathy
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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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Hi Kathy :hugfriend
Does blood transfusion or replacement is a possibility for you to prevent the crisis?????
manal
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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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Kathy cann't the blood electrophoresis show them that there is a percentage of sickle cell blood!!??
manal
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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.
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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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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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Zaini,
I agree completely. I just wish more of my countrymen did. The US is definitely not making the world a safer place.
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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 ...
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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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Zaini, i can understand your feelings and you have all the right, may God save us all
manal
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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.
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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
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dont b affraid zaini ....
it is not possible wat u feeling of...
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Hi Zaini. :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend :hugfriend
You will be surprise to know that most people are against war, that is because no body "wins in wars."
this has been proven over centuries .
The result of wars are ruins and suffering.
It only a little group of power hungry" individual" that set out to disturb civilizations.
Fear is one of the emotion that we experience and it is a reality, unfortunately its part of our lives.
It is a learning process to overcome it.
Having a group of friends makes it easy. sharing our worries alliviates our pains.
Thank-you all.Have a nice day free of pain
Kathy
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Thanks Sharmin,Umair and Kathy,
For your kind words.
ZAINI.
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to the presidents of all the countries:
Make tea not war :D
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so if they (presidents) going to make tea then .....
i just want to say to them... catch the style buddies it should b coffe , yeah coffe ,,,, well... i like cold coffe hummmm ...... so when u r going to make Cold coffe or Ice tea keep remember me ,,, .. i think ice tea is a better choice...
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Umair,
I'm a Coffee guy too. I prefer coffee over tea anytime. Unfortunately here everyone is addicted to tea and not many coffee lovers are found.
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Well you can count me as a coffee lover too.
Bottoms up
:coffeestat
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coffe hummm ... well sajid ... i usauly in daily life a big fan of tea bcoze of its chelation ability but coffe hummmmm its my taste & style .. if you drink coffe without sugar u will feell the real taste of coffe beans... i to like drink coffe without sugar and happy with it /.....
hey sajid buddy :today it was rainy over here in fsd ( an hour ago ) ... i was thinking abt you when i was enjoying the rain by playing cricket with my cousins .... did u ever enjoyed rain by playing cricket in it ... ???/.... after that i enjoyed a cup of coffe when feeeling some kind of shiver bcoze of cold weather ( slightly cold weather )... n it was gr8 experience .. i hope we will enjoy coffe togather soon.. somewhere in coffe shop in rwp togather .. but it isn't gona happen soon .. it will take some time ( when i will permited and able to drive car ) ... so :( .. i m waiting for that day ...