Sepsis - what's that??

Last year was not a bad year, but it wasn't good either! Not for me, but for others who I have loved.

In August, a very good friend who had a bad cold that wouldn't leave him, he just kept getting sicker and sicker. This young man, of 34 years, had had a pace-maker ever since he was a young child, so, he had a lot of experience with being sick and even going to hospital, thought that he was fighting with the same problem again, so, he took himself to the Royal North Shore hospital to see a doctor.

The doctor put him straight into hospital and called his parents. They then proceeded to work on him, after telling him that he had a very bad case of pneumonia and it would be to his benefit if they put him into an induced come for the time being. They needed to fill his body with the drugs that would hopefully help him with the infection and they thought that they could bring him out of the coma after that time.

Friends and family gathered around and were visiting him every hour of every day, hoping that they were going to be the ones who were there when he woke up. The staff in the ICU were inspirational and if I ever had to go to another hospital, (please noooo!) I would be very happy knowing that I was going to the fantastic RNSH. They did everything that you could ask for, they talked to Chris as if he was awake and they had to shave, wash make him look as pretty as possible, we all knew that Chris was a bit ....vain!

I started thinking about how long I had known him and all the things that he did to make him special to me.

I first met Chris 12 years ago, when he was working as the 2nd Chef along side of a girl friend called Dee and another friend called Doug. They were funny, loud and such wonderful quirky people that you only had to watch them work to know their food and coffee, would be superb - and it was.

They worked together for the next 6 years and I was lucky enough to be considered their friend and their 'Sydney Mum', being that much older than they and with two children myself. Sometimes when my girls had gone to their father's place for the weekend and I was at a loose end, Chris would ask me over to his place to watch a video or play some games on the Playstation and have something yummy, that he made to eat.

Dee got married and Chris was in a relationship with Miwa. He was entranced by everything Japanese, including, Astro Boy, the Playstation and Miwa!

During the next couple of years, Dee started working in the horticulture field and had a baby; Chris went from restaurant to restaurant honing his skills enough to cook with The Iron Chefs - he thought that he had made it and I had the stroke.

Being Chris, he was a source of fun and laughter, even when I wasn't anywhere near my best and he told me many times, "we're here for a good time, not a long time", I wonder if he knew???

As time went on, they helped us to understand that if Chris was to recover, he would not be the Chris that we had known. He would certainly loose his fingers and toes if not more and that meant that he wouldn't be able to be a Chef - he would not be very a happy man at all. As well as these extremities that were affected by gangrene, his liver, lungs and kidneys were all in a bad state with the kidneys being on dialysis 24/7 and himself being on life-support. I remember that all of us at one time or another over the next three weeks, were sure that he was just sleeping and we would talk to him as though he was listening.

He never woke up.

Chris died of Sepsis - a horrific infection of the very blood that flows around our body and is supposed to keep us alive - I am putting a link to the Sepsis Organisation to help people to understand what this hideous and potential fatal complaint can do.

This is for Christopher Mack Galloway R.I.P.   -    29.3.1978 - 11.9.2012

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http://www.sepsisalliance.org/faces

Pneumonia

Sepsis and septic shock can result from an infection anywhere in the body, including pneumonia. It is known that in the United States, health care–associated infections (HCAI) affect 1.7 million hospitalizations every year. And, the two most common conditions are sepsis and pneumonia. In February 2010, a study published in theArchives of Internal Medicine, confirmed the high costs resulting from caring for patients: an more than $8.4 billion per year. In addition to this, the study found that such infections cost an average of an extra 11 days in the hospital and $33,000 dollars, per person.

Sometimes called blood poisoning, sepsis is the body's often deadly response to infection or injury. Sepsis kills and disables millions and requires early suspicion and rapid treatment for survival.

Worldwide, one-third of patients who develop sepsis die. Almost 20% of patients who develop sepsis after surgery die. Many who do survive are left with organ dysfunction and/or amputations. (What is the prognosis (outcome) with sepsis?)

The most common source of infection, among adults, is the lung or lungs.

Famous People Who Developed Sepsis Following Pneumonia:

Actor Jeff Conaway

Born October 5, 1950, died May 27, 2011 due to sepsis from pneumonia.

Jim Henson, creator of the Muppets

Born September 24, 1936, died May 16, 1990 due to sepsis from pneumonia.

Definition of Pneumonia

Pneumonia is an infection in the lungs. The infection can be only in one lung, or it can be in both. There are several causes of pneumonia but the most common are:

• Bacteria
• Virus
• Fungus

Left untreated, pneumonia can be deadly. In the days before antibiotics, it’s estimated that about one-third of those who developed bacterial pneumonia died.

5.1.2013

Rehab Rules

I have a lot to tell you today and all of it good news!!

Last Wednesday, my sister Maria and her husband Milton, drove me to Royal Rehabilitation Centre Sydney, because it had been quite a while since they used to spend their days out there with me, and boy did they get a shock to find that all of the buildings (except one the out-patients use) that they had spent a good deal of their time in, were gone!

They came into the out-patients building to see the nurses and Dr Zeman and my lovely, long suffering OT Lisa. When we got to Lisa, Maria asked her what else she thought that I should be doing (uh oh!), and was there anything else that I could be doing (more than using the Saebo Flex, the Saebo Stretch, using the mirror therapy, the tens machine, the balls little and big) to help my recovery. 

They chatted for a bit while I picked up and put down the special balls from Saebo and Lisa told Maria that I was extremely lucky, as I was to be given another dose of the Botox in my wrist! As I have mentioned before, the government gives stroke recoverers, 4 doses of Botox/Dysport (providing it is having a beneficial effect) for the treatment of upper limb muscle spasticity due to the stroke, I have been given this amount of the drug quite some time ago and since then, the other doses that I have been fortunate enough to have used on me, are for Dr Zeman to teach different doctors how to use Botox/Dysport, how much and where they can used for the treatment of the spasticity.

When I went into the clinicians room, Maria came with me to see what Dr Zeman does and how many Drs are getting the benefits of Dr Z's expertise. Then they were ready, and it is not a pretty thing as I am given an electric probe to help find the correct muscle and when they do find it, the probe bounces up and down as my heart beats. Not nice at all, but I am very, very grateful for being a research specimen!!

After they have given me a dose of Botox, I then have to do as many exercises as I can, until two weeks have passed when I will get my affected arm cast in plaster again. I returned to rehab for the next appointment and although I had done a lot of the necessary exercises, a dear friend is in Royal North Shore Hospital ICU as he fights a virulent virus and that had got in the way of the amount of exercises that I did do.

Lisa has been very patient and kind with me, and I know, that I have been ready to give up on me long ago, but she is NOT, so, I am trying to do a lot more of the Saebo exercises than I have to do, so, when I return to have my arm cast again, I hope that I will have done everything that WE can to have a successful outcome this time!

26.8.2012

Painless pain???

One of the reasons that I haven't written for a couple of months, is that I feel so bad that I have been going through a plateau and haven't been doing ANY of my exercises for 6 weeks! I know! After doing more than my share of the boring, repetitive and sometimes painful exercises for over 5 years - I came to a stop! 

Now, I am going to be in trouble with my lovely OT Lisa, as my little muscle in my right (affected) arm is soft and going away! Lisa is a fantastic and very hard working Occupational Therapist, who is going to see me next Wednesday!!! 

You see, I have been so fed up, that I couldn't be bothered to do the exercises, but you don't realise how quickly your muscles atrophy in such a short space of time, and I didn't realise the Lisa would be able to get me another 6 weeks of Rehabilitation at the Royal Rehabilitation Centre Sydney!

What had happened to me was something that no-one could foresee happening, but had enough of an impact on me to make me not want to do anything! I thought that I had had another, small stroke! 

One day while I was at work, I had a dull headache all day but didn't think anything much about it until I appeared to have 'broken glass' in front of my eyes for at least an hour. I kept blinking it away, except it wasn't going away! Then after a while, I noticed that it was gone and really didn't think about it again. Later that night when my daughter came home and I was speaking to her about her day, she started looking a bit frightened and as she is only 17, it worried me and I thought I was saying 'not to worry, what is the matter', but I was talking 'gobbledegook' and that really got me upset!

We called my neurologist and made an appointment for me to come in and see him. When we did tests etc Dr Joffe said that he thought that I was having a 'painless migraine'! I had never heard of such a thing, but I felt that he at least should know what was wrong with me. The more I mentioned to people about this, the more I heard about it and it the more I heard about it the more people said, 'oh yes, my ***** gets that'! So, I had a 'painless migraine' and apparently it isn't painless at all, but my pain sensors are in a part of my brain that has been altered by the stroke so pain is different in different parts of my body now and I can't explain it, but I can still feel it in a different way!!

After Dr Joffe told me that this is what was happening to me, I was left with....an 'oh no' sensation! Now that I knew that every thing was a-okay with my health, I had to face the prospect of seeing Lisa and telling her that I hadn't done my exercises for...

25.8.2012

Homecoming

When I came back to my apartment after being at rehab the second time, I had no idea what to expect, I just that I knew nothing would ever be the same again.


My family settled me in at my home as best they could but I was so upset that my children were not to be living with me anymore that I thought that I would literally die, but at least, I was back at home. 


The first day I spent at home, (with most of the time spent in bed) and then the second day, I got a taste of what my life would become for the fore-seeable future. I was awakened by my front door bell and then the carer came in to my room and the daily washing, dressing and feeding began. I had gotten used to carers at my sisters house and of course I was used to the nurses at rehab, but no one ever told me that I was to have a nurse or carer for most of the time when I first came home.


My mother came to spend a few days with me every couple of weeks, my sisters all came here and there and my girls came over most afternoons after school, so, I wasn't left alone completely by myself which is a good thing, after such a traumatic event, and at least with them at my home, I had something to occupy my time.


However, when they went home, silence descended on me and I was alone. My family had organised Foxtel for me (the cable pay for channels) and I had the normal television to make my life 'a bit easier', but I can tell you, there was nothing that could make up for my previous life and I spent a lot of my now time crying and thinking what I would be doing in my life, if I hadn't had the stroke!


This is the list of people who came into my life and spent a great deal of time in my home from that day forward: The counsellor - very important, the Occupational Therapist - they helped my to organise my time and made sure I could do my exercises, the Speech Therapist - for obvious reasons, I couldn't speak! Physiotherapist and at least one Carer who washed, dressed and helped me to learn my way around my home, the grounds, the garden and to the local shops. These people were to all intents and purposes - me.


The most important person to me at the time was Gemma, the counsellor. I railed and ranted in fits and starts as best as I could since I still couldn't speak hardly at all. She organised for my girls to speak to her when they wanted or needed to, all the services necessary for me, such as community cars, taxi vouchers, laundry service, Stroke Survivors group and other things like that.


Tania, the Occupational Therapist came and tried to make things better for me and all of her 'clients' I am sure, but I really didn't understand what she spoke about and how my doing what she was doing was going to make my life 'better'! She made up lists for me to follow when we went to the supermarket, or when we went to the cafe, or when we just went up to the Mall. She tried to show me how and what I could do (which wasn't a lot!) and I tried, but mostly, I cried.


Then there was Ness, the other Occupational Therapist who worked on my hand and arm and spent a long time trying to get me to work with a casino 'chip', running it round and round my left hand and fingers to try to help me become adept at using my left hand. What a lovely young woman she was and she tried hard to make me lighten up. I know that she would be amazed at my progress as I think that I type quite fast with only my left hand!!


Of course, the most important person to my mind at the time was the Speech Therapist as I had been an actress and a compere and had used my voice as my way of making a living! Amanda and then Julia were the most vital people in my mind - they could give me back my life and my living - or so I thought. However, it was a long and very arduous undertaking to try to make my mouth make the sounds that I was used to making. 


After a while, I had to employ my own team of people as I had used up all the services that the government provided to a disabled person for free. Luckily I was able to choose the best people from Royal Rehabilitation Centre Sydney. So, I had Philip W for my physio, Jennifer W for speech, Helen for OT and Peter my ex-husband to make sure everything was going like clockwork, but nothing and no one could help me to try to become the person who was left over from the person that used to be.


15.7.2012

Subluxation-ed

I have written what I have been feeling lately and haven't thought about how my readers can follow me through my rehabilitation - but I am going to be talking to some others over the next few weeks to work out how I can do that, so, it becomes easier for you. However, I shouldn't get carried away like I usually do, as I have a heap of things that I want to write about right now!


The SAEBO has been AMAZING!! I am a bit miffed because it has been 5 years since I had my stroke and it has taken me 4 and a 1/2 years to find the 'mechanical hand', meanwhile my knuckles have become subluxation-ed(? I don't know if that is what it is called!!) they have gone inwards and don't work properly and that is a big concern of mine. 


I doesn't matter how fantastic a piece of equipment is, if you don't have the correct way of holding it, it won't work properly and that is what is happening with my hand!

The Saebo (*taken from their website so that readers can get a fix on what it looks like!) is a fantastic piece of mechanical wizzardry, that the wonderful people at Royal Rehabilitation Centre Sydney, have tried to help me to use. 


It works so amazingly well, that I am very annoyed with myself and my hand because by this time (six months) I should be further along with recovery, however, I am going to be given another injection of botox (botulinum toxin) in May and it will probably the last time as I have been so very lucky to have the staff at RRCS on my side and trying to do everything in their power to help me to recover as well as I can. So, I HAVE to work harder than I have ever worked before, to try and get as much use out of my hand and the Saebo while the botox is in my system.


There are a system of exercises that I have to do each day (I get frustrated and won't do them sometimes because after 5 years, I am so sick of doing them - but then I think about Christina and how her life became so hideous that she felt that death was her only recourse - and after a few days of thumbing my nose at myself, I come crawling back to do my exercises again) with the saebo, they are not that hard but you see, we are trying to teach the brain to go along a different path and explore them in a neuroplasticity way, hopefully, my hand and my brain will end up working together! 


So, as I was saying, the hand has to work in sync with the brain and that is where it becomes a bit sticky but the saebo helps and I would have never thought it possible that something as simple as this, would make such a difference to peoples lives. I have to strap the saebo on to my right arm and then I pick up the first ball and put it in the basket, then pick up the second one etc I have ten of the balls and then a heap of different shapes and sizes of 'things' that I have collected over my rehabilitation, that I have to pick up and put somewhere different. At the moment, my aim is to try to make my right arm able to become stronger and stronger so that I can pick up the saebo and put the balls where ever I want. It is starting to come to me slowly, but me being me, wants it to be able to be strong right now!


I can now pick up my toothbrush and rub my teeth in a kind of brushing way, pick up my splayed and use it to put food in my mouth, and kind of brush my hair with my right hand! All of these things are new to me, thanks to the saebo! As you can see, small things amuse small minds but they also help us to feel like we are getting somewhere.


27.4.2012

Life is good....sometimes.

My 5th anniversary of having the stroke, was last Saturday the 17th of March, the day that time stood still for me, and I was a little bit afraid of the day and the date until it came to it, but I can tell you now, that the day came, was seen and was conquered!!


I celebrate the fact that I have lived through a stroke. Like a cancer sufferer, the consensus is that once you have passed the great number 5 in years and have survived, you can only look up.


The next day, the 18th of March, a girlfriend (Kristina, the wonderful girl who washed my hair in the rehabilitation hospital!) and I, walked the length of the Sydney Harbour Bridge and back just so I could defy the odds and spit in the eye of fate, and boy, did it feel good!


I have made a huge amount of recovery but there is still a really, long way to go. I think that is to be expected when my family was told, that I would most likely spend the rest of my life in a wheelchair with little or no speech and would probably be better off in a nursing home! Not only did I not go to a nursing home, I have almost lost the limp that I have, my arm is very good and my hand is 'functional'. Those are all pluses in my book!


The doctors and the nursing staff of a rehabilitation facility, have a tried and true way of dealing with the "client" and their families, by telling them the worst possibly outcome and then have those "clients" and families push to ensure that they would not be a statistic but would prove them wrong. This is me to a T!


This past week, I was asked by the head of the OT department, at the Royal Rehabilitation College, if I would be one of the 'patients' that were to be used for showing the electrical stimulation machines and what they could do on a real person. Of course I said 'yes' because they are wonderful to me and need all the help that we can offer them and for once, I could give something back.


I had also been asked to take another woman (who had her stroke 6months before me and who Dr Zeman has taken on), under my wing. I had to show her how to get the bus to Rehab as she has just got on to the pension and has to get to rehab the best way she can, like the rest of us! However, she is much worse in the physical aspects of her recovery than I am but I realise that more than half of her reasons for not being any better are soley because she has relied on other people for the whole time! 


I decided to do both things at once, go to Rehab to help with the Electrical Stim and to help this woman by asking my friends to use her as another helper in the ES. I had to meet her in city of Sydney and show her how to get the bus to rehab and then we had to walk up the hill to Weemala and go to the workshops there and then walk back down the hill again! I was totally bushed by the end of the day and now I know why she isn't any better than she is - she finds every thing too hard - I understand were she is coming from believe me, but it is hard enough for any of us to get around and I for one can't have someone else pulling me down, so, I have to tell it like it is so that the new people will realise that we are all in the same boat.


When I said to her, "you should come down to the swimming pool" (the council one at the leisure centre), and she said "why" and I said, "it will make your leg stronger as you have to push against gravity and in a couple of weeks, you won't know yourself" and she said, "I don't like getting wet"! I was gob smacked! She is like that with everything and I am not going to let her get away with trying to sabotage herself by living up to her image of "poor me"!


When she said "well, my stroke was bigger than yours because the Drs told my husband that I would be probably not get any better, and I might even be in a wheelchair as my walking was so bad", and I said, "Well my friend, I was in the same state as you when I was here at the Royal Rehabilitation Centre Sydney, Dr Zeman thought that I would end up in a nursing home and virtually washed his hands of me when I was discharged! Now look at me, when I come in here, Dr Z comes over to me, we shake hands and have a really good old chat (as you saw today!), he calls me his 'star pupil', and not for nothing! 


"I was as bad, if not worse than you when I had the stroke, because I couldn't talk and you could and can, you can use your right hand and a lot of us were predominantly right handed and we have had to learn to use our left hand, so stop measuring yourself against who is worse than you and who isn't and who has it harder than who. The first thing you will have to realise if you want for me to mentor you is that it is up to YOU not to become a statistic"!!


She was so upset with me that she didn't talk to me for most of the way home - then she must have thought it over because she emailed me the next morning, this is what she wrote - 'I felt I grew so much today by finding out how to get to Rehab by public transport and it was fabulous to meet so many new and lovely people. I had the best day ever..thanks to you…love *******…xxx'.


So, it just goes to show - you can't give up on people!

24.3.12

Dignitas or not Dignitas

It has been a few weeks since I wrote and more than a few weeks since I have wanted to write - I still mourn for Christina Symanski, and she is still in the news in the US even though she has gone from us. 


Firstly, I am appalled (I know what the English newspapers are capable of!!), at the Daily Mail on-line who has started all this rubbish again about whether Christina took her life because she had a broken heart and makes people question her motives etc, isn't it enough that the poor woman said in her own words she "was living an intolerable life"?


I have read a few articles about this now, to try to make up my own mind how I feel on assisted suicide. I have read a lot about Dignitas in Switzerland and how they assist the suicide of people who want to die and I believe that a cause like Christina's could have been properly assisted with this aim instead of having to take TWO MONTHS to bring about her death, herself.


There are two books that I have read about the case for taking your own life, they are, "Whose Life Is It Anyway" by written by Brian Clark in 1972 and "You Before Me" a novel written by Jojo Moyes last year in 2011.  


I happened to see the movie of 'Whose Life Is It Anyway', in mid 1984 and I wanted to see it again, so, when this topic became crucial to me, I sent for the dvd and watched this fantastic movie, starring Richard Dreyfuss as a sculptor, who is left as a quadriplegic after an automobile accident. He came to the decision to end his life as did Christina, but he was in a hospital and had to get it legally contested in order to do as he wished. He, like Christina, had to not take any medication and basically starve to death, in his case, it was the 7-10 days of horror, he was fortunate to have a good lawyer and hey, this was a movie after all.


In the book, "You Before Me", the hero has decided that his life is intolerable and wants to die after 2 and a half years as a quadriplegic, but, his family asks him to 'give the six months to change his mind'. He agrees, as he wants them to accept that for him, his life 'before' compared to his life 'after', is not a life at all. 


In the book, "You Before Me", by telling us of his daily struggle just to breathe, just to try be comfortable, to sleep when he gets too hot and there is no one about to take of the top blanket, to have an itchy nose and not to be able to scratch, it go in their car to a Doctor's appointment where they have to be like a General in the Army to actually get there and be seen and not to mind too much when people (just curiosity!!) look at them as though they come from another planet! Christina when through that and more!!


In the book, he is still determined to go to Switzerland to have Dignitas help him out of this 'travesty of a life', but he has to wait the 6 months to make sure that his family will keep their end of the bargain. That is something that we can't even imagine happening to us. Can we????


Obviously, no ones family wants them to die because you love that person, but can't you just suspend your belief for just a moment to look at this person objectively? To just know that they aren't doing this for any other reason than life is just too hard, painful, and has no dignity at all.


I don't know what I want to or can do, but seeing this lovely, and intelligent young woman, who is torn by her diving into a pool one warm night 6 years ago and ending up in life as a quadriplegic, driven to death in a most horrible way, has so affected me, that there MUST be something that we as compassionate, human beings, can do about it.