I now have a professional editor for my book "First Do no harm"
It took some figuring out and a disastrous and time wasting false start, followed by help from a friend who helped me to edit...but I realised a professional was going to be needed to do this properly...I had no idea of the complexity of the job when I started,,,thought I was finished when i put the last full stop. My friend pointed out some areas i hadn't covered which was a chapter basically telling people what Quadriplegia meant to us, and a chapter explaining the sort of person Don was. I am reprinting that first one here as I don't think I can be sued for this part. I think a better understanding of this condition could be helpful should any of you have close contact with someone whith this condition. The next step after editing is to sit down with a lawyer who specialises in defamation and go through the book...this is a must unless I want to be out on the streets.
" Chapter Three – Understanding Don’s Quadriplegia
Before I go any further, the reader needs to understand how quadriplegia compromises a person's health in the beginning and especially the complications that occur with long standing quadriplegia. Some people have the impression that Quadriplegics and Paraplegics are almost the same thing. Nothing could be further from the truth. They imagine that because a person spends all day in a wheelchair that they have no body needs such as toileting, showering and the rest. Seriously. We had people sometimes say to us “And what do you do all day long?” Or they’d go into long winded descriptions about an ache in their arm or a bit of Bursitis in their knee.
This leads to another misconception which is that all Quadriplegics experience no feeling below the break, hence no pain. This was for Don, sadly not true. Don endured internal organ pain which he described as feeling as if it was burning hot to ice cold as mentioned in a previous chapter. He was hypersensitive to this pain. So for any understanding of what happened to Don, I will take a short space here and try to convey the normal life of most quadriplegics. Then there will be a better understanding of how ill and debilitated Don had become, before arriving at RNSH on April the 11th 2007.
Don became a Quadriplegic in 1982, aged thirty two, as the result of a work accident. The correct term for his Quadriplegia is C5/C6 complete. His Spinal cord was completely severed between the 5th and 6th cervical or neck vertebrae. At the time of this accident, he was a healthy, active man, and this helped him survive the initial trauma. All Quadriplegics suffer differently, depending on the level and site of the injury occurs; the severity of the spinal cord damage and a myriad of other things which affect the quality of life and also on the speed and quality of medical treatment and rehabilitation. For Don it meant complete paralysis below the break with some weakened and unpredictable arm movement, but no hand movement or feeling.
Don explained his almost total lack of balance. He said, "I feel as if my head and shoulders are balancing on a large blob of jelly.” It was often a struggle to hold his position, something it took people and even doctors and nurses time to fully comprehend. If, when you were dressing Don you let him lean in the chair to get his shirt on, for example he would keep falling forward and onto the floor. He had to be supported from the front or side or back depending on what the action was. Don had some small arm ability when he sat up in the wheelchair, and learned how to make the best use of what he had with a few aids. But once lying flat in bed he was helpless and his arms were almost useless. I always worried when others were looking after him when he was in hospital.
For Don his Quadriplegia meant that he was permanently catheterised which caused many problems such as an almost constant state of Urinary tract infection which we only treated when Don felt ill. You couldn’t treat infections every time as the antibiotics would become useless against the many infections. He had a suprapubic catheter, and a bladder the size of a walnut which did not stretch any more. This caused major problems, and many Quads develop Bladder cancer. Don was being yearly monitored for this.
Don had severe osteoporosis due to no weight being exerted through his bones. His hips were the worst but hip replacements were impossible because there was no good bone to drill into to stabilise the joint. So Don sat for years bone to bone in hip joints and that pain was unbelievable. He certainly could feel pain, despite his quadriplegia. It used to horrify me to imagine him being turned over in bed by anyone who didn’t understand the fragility. I would always turn him so that there was a pillow between his knees hoping that this time the hip joint or a long bone didn’t snap or shear away. Too often nurses would be quite rough with him and responded to our admonishments as though we were being fussy. Some treated his serious problems too casually, like playing Russian Roulette with someone else’s body. His pain was managed but never totally alleviated with Physeptone (methadone) which enabled him to get out of bed at least but never really covered the pain. The bones in his feet were as fragile as like eggshells, and the fifth, sixth and seventh cervical vertebrae were fused together into one block, not separate bones. Cervical three and four were badly degenerated. He had constant pain in his shoulders and arms and head.
He had neuropathic or nerve pain which was present constantly for many years and I would sometimes hear him softly gasping when it got too bad. Poor Don.
I will mention this in more detail later when it's relevant but what most people don’t understand about Quadriplegics is that many Quads are hypersensitive to internal organ and tissue pain, but may not feel surface pain. For example, many times Don had blisters on his hand from resting it on things he was unaware were hot but yet often he would say that his kidneys felt like they were on fire..
Circulation was not good so we were careful not to let any infection take hold anywhere but mostly on hands and feet. Don lost all his teeth in the last two years of his life, caused by medication. Because of this, Don had a constantly dry mouth, which causes tooth decay. He had a Colostomy because of bowel problems caused by Quadriplegia. Most Quads have no peristalsis [the waves of involuntary muscle contractions that transport food, waste matter, or other contents through a tube-shaped organ such as the intestine] in the bowel. Without this bowel problems are common and uncomfortable. He was often in pain from this.
All Quadriplegics and Paraplegics have to be extremely careful not to sit up in the wheelchair if there is even a slight blemish on the bottom, because by the end of the day, after sitting on this, it can develop into a pressure area and become a pressure sore. These pressure sores can take months to heal and entail time spent in bed lying on the side to heal. Don never had a broken area on his skin in all the years at home but spent many weeks and at one time six months bedridden because of skin trauma. We figured, prevention is better than cure. The time spent like this was worth it for all the good time sitting up and able to get on with life, it bought Don. Also, when sitting, no folds of clothing could be allowed to dig into the skin, so extreme care had to be taken in dressing.
In common with all Quadriplegics, Don had a poor temperature control mechanism. This is to do with where the injury is and what body systems get damaged or knocked out. Once he got too cold he would shiver like a motor for hours loaded up with blankets till we could get his temperature back to somewhere near normal. It was the same with heat, he would get hotter and hotter unable to regain control. Don suffered extremes of blood pressure. Sometimes his pressure would be so low he would just become unconscious right before my eyes. I’d grab his legs and hold them up, while lowering the head of the wheelchair so his feet were higher. He came close to death on many occasions like this.
Then he would swing from extremely low to dangerously high blood pressure – all within minutes at times. This condition which Don had almost daily since 1994 was called Autonomic Dysreflexia. Don and I managed this daily and many is the day we thought he would not survive but he did. Most Quads don’t get it this often and some never have it at all.
A more detailed explanation of this unusual condition may be necessary here. Autonomic Dysreflexia (AD) is a complicated condition and only happens to Quadriplegics. Most have it rarely, some more often. Don unfortunately was plagued by daily bouts of this life threatening condition. The technical explanation is a bit too complicated so I’ll try and explain it in layman’s terms. Most Quads have a very low Blood pressure [BP] when lying down 90/60 or slightly lower and even lower than this when seated.
Because of the damage done to the spine, if there is pain from a blocked catheter, an ingrown toenail, bowel compaction, any pain whatsoever, the Blood Pressure will shoot up dramatically and within ten minutes or so can reach dangerously high levels. For a Quad 140/80 is a dangerously high BP and if symptoms [pain or pressure] are not relieved immediately a stroke, seizures or a cardiac arrhythmia is likely to occur.
It is considered a medical emergency and should be treated as such. In Don’s case there were many causes of pain and these could not really be relieved. We would check to see that nothing was wrong but then it was a matter of piercing a capsule of Adalat and getting it under his tongue. All other methods were too slow for us and we imported our medication from the US, because it was difficult to get in Australia once Federal Health Minister Michael Wooldridge took it off the Pharmaceutical benefits Scheme [PBS]. That capsule and Don’s and my quick action saved Don’s life every single day, for the last thirteen years of his Quadriplegia. We carried an emergency card in case Don was hospitalised. When he was in other’s care we both worried because the lack of understanding in the general medical community of this condition is breathtaking. Too many assumed that Don was being fussy or hysterical, and they thought that if he calmed down his BP would decrease. Often they were too slow to administer the Adalat, again endangering Don’s life.
He had very limited breathing, something I call Quad breathing for want of a simpler term. Quadriplegics breathe in a totally different way. Don’s laboured breathing was always much worse whilst sitting up because of his breathing mechanism. If there is fluid on the lungs, most of us can breathe more easily, by sitting up, but for Don it was the opposite. This is important to understand and it will be realised later on why. Any spinal specialist knows that the breathing mechanism of a C5/C6 Quad is different to the breathing most people experience. Quads breathe using the diaphragm. They have much less respiratory reserves than the rest of us. Because of this, they also have ineffectual coughing and vomiting. The dangers this presents are that any cold or infection can quickly become life threatening because of the inability to cough up phlegm or mucus from infection. The same goes for vomiting, where ineffectual vomiting can lead to vomit entering lungs, as it can too easily be inspired into the lungs because it is unable to be expelled as effectively as it is for the rest of us. Don had been unable to fully expand his lungs since 1982 and his breathing was always shallow.
All of the above, Don had to deal with daily. But life was so good and we lived in the moment, laughing often and getting out and about when it was possible. Don was such a man. He was so brave and solid. With all the above to deal with he was the first to help others who were ill or in trouble.
Hopefully the above explanation of just some of his complex medical conditions will allow understanding that such a person should have been treated very carefully by Cardiothoracic Specialists in RNSH, not the exact opposite as was the case."
Before I go any further, the reader needs to understand how quadriplegia compromises a person's health in the beginning and especially the complications that occur with long standing quadriplegia. Some people have the impression that Quadriplegics and Paraplegics are almost the same thing. Nothing could be further from the truth. They imagine that because a person spends all day in a wheelchair that they have no body needs such as toileting, showering and the rest. Seriously. We had people sometimes say to us “And what do you do all day long?” Or they’d go into long winded descriptions about an ache in their arm or a bit of Bursitis in their knee.
This leads to another misconception which is that all Quadriplegics experience no feeling below the break, hence no pain. This was for Don, sadly not true. Don endured internal organ pain which he described as feeling as if it was burning hot to ice cold as mentioned in a previous chapter. He was hypersensitive to this pain. So for any understanding of what happened to Don, I will take a short space here and try to convey the normal life of most quadriplegics. Then there will be a better understanding of how ill and debilitated Don had become, before arriving at RNSH on April the 11th 2007.
Don became a Quadriplegic in 1982, aged thirty two, as the result of a work accident. The correct term for his Quadriplegia is C5/C6 complete. His Spinal cord was completely severed between the 5th and 6th cervical or neck vertebrae. At the time of this accident, he was a healthy, active man, and this helped him survive the initial trauma. All Quadriplegics suffer differently, depending on the level and site of the injury occurs; the severity of the spinal cord damage and a myriad of other things which affect the quality of life and also on the speed and quality of medical treatment and rehabilitation. For Don it meant complete paralysis below the break with some weakened and unpredictable arm movement, but no hand movement or feeling.
Don explained his almost total lack of balance. He said, "I feel as if my head and shoulders are balancing on a large blob of jelly.” It was often a struggle to hold his position, something it took people and even doctors and nurses time to fully comprehend. If, when you were dressing Don you let him lean in the chair to get his shirt on, for example he would keep falling forward and onto the floor. He had to be supported from the front or side or back depending on what the action was. Don had some small arm ability when he sat up in the wheelchair, and learned how to make the best use of what he had with a few aids. But once lying flat in bed he was helpless and his arms were almost useless. I always worried when others were looking after him when he was in hospital.
For Don his Quadriplegia meant that he was permanently catheterised which caused many problems such as an almost constant state of Urinary tract infection which we only treated when Don felt ill. You couldn’t treat infections every time as the antibiotics would become useless against the many infections. He had a suprapubic catheter, and a bladder the size of a walnut which did not stretch any more. This caused major problems, and many Quads develop Bladder cancer. Don was being yearly monitored for this.
Don had severe osteoporosis due to no weight being exerted through his bones. His hips were the worst but hip replacements were impossible because there was no good bone to drill into to stabilise the joint. So Don sat for years bone to bone in hip joints and that pain was unbelievable. He certainly could feel pain, despite his quadriplegia. It used to horrify me to imagine him being turned over in bed by anyone who didn’t understand the fragility. I would always turn him so that there was a pillow between his knees hoping that this time the hip joint or a long bone didn’t snap or shear away. Too often nurses would be quite rough with him and responded to our admonishments as though we were being fussy. Some treated his serious problems too casually, like playing Russian Roulette with someone else’s body. His pain was managed but never totally alleviated with Physeptone (methadone) which enabled him to get out of bed at least but never really covered the pain. The bones in his feet were as fragile as like eggshells, and the fifth, sixth and seventh cervical vertebrae were fused together into one block, not separate bones. Cervical three and four were badly degenerated. He had constant pain in his shoulders and arms and head.
He had neuropathic or nerve pain which was present constantly for many years and I would sometimes hear him softly gasping when it got too bad. Poor Don.
I will mention this in more detail later when it's relevant but what most people don’t understand about Quadriplegics is that many Quads are hypersensitive to internal organ and tissue pain, but may not feel surface pain. For example, many times Don had blisters on his hand from resting it on things he was unaware were hot but yet often he would say that his kidneys felt like they were on fire..
Circulation was not good so we were careful not to let any infection take hold anywhere but mostly on hands and feet. Don lost all his teeth in the last two years of his life, caused by medication. Because of this, Don had a constantly dry mouth, which causes tooth decay. He had a Colostomy because of bowel problems caused by Quadriplegia. Most Quads have no peristalsis [the waves of involuntary muscle contractions that transport food, waste matter, or other contents through a tube-shaped organ such as the intestine] in the bowel. Without this bowel problems are common and uncomfortable. He was often in pain from this.
All Quadriplegics and Paraplegics have to be extremely careful not to sit up in the wheelchair if there is even a slight blemish on the bottom, because by the end of the day, after sitting on this, it can develop into a pressure area and become a pressure sore. These pressure sores can take months to heal and entail time spent in bed lying on the side to heal. Don never had a broken area on his skin in all the years at home but spent many weeks and at one time six months bedridden because of skin trauma. We figured, prevention is better than cure. The time spent like this was worth it for all the good time sitting up and able to get on with life, it bought Don. Also, when sitting, no folds of clothing could be allowed to dig into the skin, so extreme care had to be taken in dressing.
In common with all Quadriplegics, Don had a poor temperature control mechanism. This is to do with where the injury is and what body systems get damaged or knocked out. Once he got too cold he would shiver like a motor for hours loaded up with blankets till we could get his temperature back to somewhere near normal. It was the same with heat, he would get hotter and hotter unable to regain control. Don suffered extremes of blood pressure. Sometimes his pressure would be so low he would just become unconscious right before my eyes. I’d grab his legs and hold them up, while lowering the head of the wheelchair so his feet were higher. He came close to death on many occasions like this.
Then he would swing from extremely low to dangerously high blood pressure – all within minutes at times. This condition which Don had almost daily since 1994 was called Autonomic Dysreflexia. Don and I managed this daily and many is the day we thought he would not survive but he did. Most Quads don’t get it this often and some never have it at all.
A more detailed explanation of this unusual condition may be necessary here. Autonomic Dysreflexia (AD) is a complicated condition and only happens to Quadriplegics. Most have it rarely, some more often. Don unfortunately was plagued by daily bouts of this life threatening condition. The technical explanation is a bit too complicated so I’ll try and explain it in layman’s terms. Most Quads have a very low Blood pressure [BP] when lying down 90/60 or slightly lower and even lower than this when seated.
Because of the damage done to the spine, if there is pain from a blocked catheter, an ingrown toenail, bowel compaction, any pain whatsoever, the Blood Pressure will shoot up dramatically and within ten minutes or so can reach dangerously high levels. For a Quad 140/80 is a dangerously high BP and if symptoms [pain or pressure] are not relieved immediately a stroke, seizures or a cardiac arrhythmia is likely to occur.
It is considered a medical emergency and should be treated as such. In Don’s case there were many causes of pain and these could not really be relieved. We would check to see that nothing was wrong but then it was a matter of piercing a capsule of Adalat and getting it under his tongue. All other methods were too slow for us and we imported our medication from the US, because it was difficult to get in Australia once Federal Health Minister Michael Wooldridge took it off the Pharmaceutical benefits Scheme [PBS]. That capsule and Don’s and my quick action saved Don’s life every single day, for the last thirteen years of his Quadriplegia. We carried an emergency card in case Don was hospitalised. When he was in other’s care we both worried because the lack of understanding in the general medical community of this condition is breathtaking. Too many assumed that Don was being fussy or hysterical, and they thought that if he calmed down his BP would decrease. Often they were too slow to administer the Adalat, again endangering Don’s life.
He had very limited breathing, something I call Quad breathing for want of a simpler term. Quadriplegics breathe in a totally different way. Don’s laboured breathing was always much worse whilst sitting up because of his breathing mechanism. If there is fluid on the lungs, most of us can breathe more easily, by sitting up, but for Don it was the opposite. This is important to understand and it will be realised later on why. Any spinal specialist knows that the breathing mechanism of a C5/C6 Quad is different to the breathing most people experience. Quads breathe using the diaphragm. They have much less respiratory reserves than the rest of us. Because of this, they also have ineffectual coughing and vomiting. The dangers this presents are that any cold or infection can quickly become life threatening because of the inability to cough up phlegm or mucus from infection. The same goes for vomiting, where ineffectual vomiting can lead to vomit entering lungs, as it can too easily be inspired into the lungs because it is unable to be expelled as effectively as it is for the rest of us. Don had been unable to fully expand his lungs since 1982 and his breathing was always shallow.
All of the above, Don had to deal with daily. But life was so good and we lived in the moment, laughing often and getting out and about when it was possible. Don was such a man. He was so brave and solid. With all the above to deal with he was the first to help others who were ill or in trouble.
Hopefully the above explanation of just some of his complex medical conditions will allow understanding that such a person should have been treated very carefully by Cardiothoracic Specialists in RNSH, not the exact opposite as was the case."
15 comments:
Great to hear it Therese, it is going to be a year where things will progress fast for you... better buckle up lady!
Very well explained. I had no idea it would be both so complicated and so fragile. You are amazing.
Glad your editing process continues. It's always good to 'state the obvious' when writing stuff like this, hey? We know *we* understand about it, but yeah... I guess there shouldn't be an assumption that someone else would appreciate the depth of the condition. so yeah - good on you?
i'm sure Don is smiling and happy as he helps you getting this thru for you all. goo on ya.
I am SO sorry. So sorry I didn't know any of this stuff, so sorry I have been so ignorant of what you guys went through. Thank you for educating those of us who are so ignorant of what quadriplegia involves. I don't know what to say right now, but, nope can't say anything right now. This book is so, so worth writing and if there is anything I can do, please let me.
What a testament to your love, both the book and the day to day care that you gave to Don. I know you were lucky to have him but he was certainly lucky to have you as well.
seatbelts on already...just going to hold my breath for the 30/31st Jan when the Coroner's office will tell me good or bad news. Thats first.
Caroline...not amazing at all, just human. Life is pretty sweet when you have it. Don was luckier than some who did not get to see their kids grow up, nor grow to the love we had.
mal, it was a physiotherapist who told me to put this in as she knew the problems...and needed because he should have been treated with kid gloves.
Foxymoron- you don't have to feel like this. It was all over for Don before we even came accross each other. Don and I had no knowledge of the problems till it hit us, as well...I just needed people to understand his frailty and will to live through it all...so that when I can publish the following chapters they will know what was really done to him and understand...if that makes sense.
Random thinker...I think, even considering all of the above...I think, no I know that we were two of the luckiest people on earth. You can't buy what we had...which is why I am committed to at least finding some justice for him, and us.
I remember the editing problem you encountered.
Glad this book is now on the right track!
I'm trying to be kind and put my daughter-in-law in your position with my son but she would never have lasted the distance as you did.
I've seen the x-rays of the pressure sores that he had and in the finish there was almost no buttock flesh at all.
He was treated very well even though they knew he was dying which makes it hard for me to think of the treatment handed out to Don.
I've always said trainee nurses should be put in a bed for a day to see life from the other side.
I would like to purchase a signed copy friend--but I need for you to sign it in person---here's to that day coming soon I hope!
My students have similar situations with their little disabled bodies being stuck in wheelchairs all day long. We get them out and into special standers and do floor mat exercises. My kiddos do not have catheters, but are diapered. People don't know how fragile life can be until all goes haywire. One little cold can send these pups into the hospital.
You have knowledge and experience beyond the scope of most of the world, and for this the world needs to read your book.
cheers to you!
Don was blessed to be loved by you.
Good explanation of the daily problems of life the two of you faced together.
I too want an autographed copy of the book. it will be a useful book for many people.
Sharing your story will be a blessing to others. i know that's partly why you're doing it - i just wanna encourage you to stick at it and see it through. Don must be very pleased with you, ma'am :)
You have certainly opened my eyes just with that one chapter. I never professed to know anything about being a Quad... but I simply had no idea how complex it really is.. I am glad you have found a professional to do the editing... Heres to a fantastic year ahead...
I hope you don't think I'm making light of this by calling it fascinating, because it is fascinating for someone with such little exposure to such things.
My mother is employed with the school district working with kids that are disabled, both mentally and/or physically. It's merely a coincidence that she used to be a nurse - it played no role in her hiring and certainly isn't experience the other teachers in the program have. It's too bad they're not required to read something as informative as what you've just laid out here.
And congrats on your editor acquisition!
http://bigpondnews.com/articles/National-Regional/2009/01/07/Hospital_detects_viral_superbug_293119.html
check that out Therese?
Sling, it took some working out, but now its right on track or something like that.
Jahteh, Don and I almost didn't make it at one time but we kept at it and it all smoothed out. I think trainee nurses, doctors and all hospital admin should spend a couple of eeks in bed, tied down so they can't turn over, totally reliant on staff to turn and wash them... then they might have a little idea of the suffering.
CS - none of my blogmates will have to purchase a copy, if you want one I will ensure you will get one... you lot have done the hard yards with me and kept me sane (or sort of sane)
Mom...ditto re CS (above)
Mal...sharing is a part of it, the biggest part is exposing the mongrel bastards who murdered him...and the system which protects them...and the cause of justice has its own merit.
wanna be slimmer...eyes open wide is always the best way to be.
Sara I know you are not making light...for me it was learning as i went with only Don telling me what was needed...we managed for 25 years...took professionals less than a day to stuff up his life and cause his death.
Cazzie, i saw that. I would almost hazard a guess that there was VRE in the next isolation room to the three that were for MRSA...one room was sealed totally with plastic stuck around the door. The nurse was gowned up to buggery unlike the ones nursing MRSA. I am still looking into this part of it as I suspect Don aquired even worse infections than what we were told...The day he came home to die, they completely sealed off his room and sprayed around its entrance wiith strong smelling chemical with Don and my sister still inside.
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