Saturday, 21 May 2016

Blog Update 21 May 2016




Blog Update 21 May 2016

Another heart transplant clinic done and dusted. Some are uneventful but most recently have been like a U2 tribute show. The hits just keep on coming lol.

Apparently my liver has decided to join my heart, lung and kidney party which is surprising given I never invited it, but we will keep an eye on itI can't have general anaesthetic unless it’s an emergency due to my lungs and apnoea which is a bugger given I do need an op to fix an abdominal hernia which is a source of constant pain. The specialist reiterated that my heart and lungs are stuffed and there is nothing they can do.

On the up side she finally relented and will put me into Cairns Base Hospital cardiac unit as she can't fly me to Brisbane due to me having to cart oxygen all over the place. This as some of you will already know is an outcome I have been trying to make happen for over 2 years now. It was particularly amusing when she put it to me as a proposal that she had come up with and asked me what I think. Can you imagine the look on my face as I reminded her for the umpteenth time that I had been asking for this for over 2 years? In any case I kept the peace as this was the outcome I was looking for.

I have a number of procedures coming up that I would normally have a general anaesthetic for, so what alternatives we use and what gets cancelled should be interesting.

Will be coming out of retirement in the next few weeks and writing a story on the lack of disability parking in the right places where I live here in Far North Queensland after a young journo got it completely wrong in a local News Limited paper. Unfortunately the journo showed me nothing but contempt by going on holidays without contacting me after I offered to help him and also correct the quite awful article he had written. Those of you that know me personally know how I deal with those that treat me with contempt. This should be fun. The written word is a powerful thing.


I’ll just keep battling as I always have and keep trying to get the things done that I want to get done before the end comes. As long as I can still drive and I have a computer, recording device and a camera I shall continue.

Take care luv yas all, well some of you lol


D


Thursday, 28 April 2016

Middle-aged men missing out on friendship can face physical and mental health risks

From Australia's ABC:

Middle-aged men missing out on friendship can face physical and mental health risks


Imagine waking up one day and realising — aside from your partner or family — you have no-one to talk to.
No close friend to call if you have lost your job, no shoulder to cry on if your parents are gone and no-one to support you if your relationship breaks down.
This is the reality many men face as they head into middle age. Not only are these men lonely, their social isolation has the potential to significantly affect their physical and mental health.
Studies have linked social isolation and loneliness to a whole host of health issues, including high blood pressure, heart disease, stroke and depression.
In fact, research has shown that people who are socially isolated have up to five times more risk of dying from almost all causes.
Men with lower levels of social support are also more vulnerable to psychological distress, according to head of research for beyondblue Dr Stephen Carbone.
People in their networks dismiss it or tell them to toughen up... that's not exactly encouraging.
Dr Elizabeth Celi, psychologist
"Social supports act as a buffer, as a protective mechanism against the development of depression," he said.
"Social connectedness is a major contributor to improved mental health wellbeing."
Dr Carbone said our social networks were vital in helping us navigate life's rough patches, and those without this support find their stress is not reduced by some of the "diffusing, de-escalating things that happen when you interact with others".
Maybe these men can get by — but they'll likely do better in the long run with some friends in their life, Dr Carbone argues.
We're crowdsourcing ideas on how to maintain social connections in middle age. So get in touch and let us know your experience of making and maintaining friendships health@your.abc.net.au
Even if you do not discuss your problems with friends, sometimes just being around other people helps.
"Interacting with others is fun; it's enjoyable, it offers you a bit of an antidote to what else might be happening," Dr Carbone said.
"It's like the old adage, 'humans are social creatures'. We do better together."

A common story

It also found that 37 per cent of those surveyed were not satisfied with the quality of their relationships, often feeling they were not emotionally connected or supported.

Friendship tips from the experts:

  • Explore hobbies and activities you find engaging, positive and productive, as friendships can flourish through shared interests.
  • Think quality not quantity. It may be catching up with just one friend, once a month.
  • Online is fine too. Supplement face-to-face catch-ups with digital communication - a text or Facebook message. Small steps over time help develop friendships.
  • Make friends with women too, or other couples.
  • Avoid friendships that revolve around drinking, drugs or uncalculated risk taking.
"Many men want greater openness with their friends and to be able to talk about personal problems, but admit they don't always have the skills or tools to initiate these conversations, or understand how to respond when a friend opens up to them," the researchers found.
UK men's health charity Movember made similar findings, reporting that the proportion of men aged between 35 and 54 who said they had no friends with whom they could discuss a serious topic (11 per cent) was double that of those aged between 18 and 34 (5 per cent).
Asked how often they had contact with any of their friends, a higher proportion of middle aged men said it was less than monthly when compared to younger men. The odds of never making contact with friends doubled among the men aged 35 to 54, compared to the younger age groups.

Wellbeing 'dips' during middle age

Friendships can be particularly helpful when we head into middle age, when many of us have lower life satisfaction and wellbeing.
The UK's latest annual wellbeing snapshot found those aged 45 to 64 were the least satisfied with their life overall.
Similarly, last year's Australian Unity Wellbeing Index identified a "slight wellbeing dip in middle age" after which satisfaction with life increased into old age.

Men and their sheds


If you or someone you know is looking to connect and make friends with men of a similar age, a Men's Shed could be the way to go.

The Men's Sheds movement was formed and decade ago and since then has taken off across Australia, providing a powerful avenue for men to connect and socialise.

That same opportunity to make friends and share skills is now available via your preferred device atThe Shed Online, a virtual community for men.

Founded by beyondblue, The Movember Foundation and the Australian Men's Shed Association, the Shed Online is a space for men to talk and interact with other men.

It also provides men with information on health and wellbeing.

(Photo: ABC South West/Anthony Pancia)
It has been suggested the demands of managing the home, balancing work and family, as well as caring for ageing parents and children may all contribute to this sense of dissatisfaction.
Given the "buffering" aspect of friendships are so vital at this time, why is it that friendship is such a challenge for some middle-aged men?
Expectations and the narrow cultural norms associated with masculinity were identified as issues by those who contributed to the beyondblue research.
"The expectation that men are silent, resilient, unemotional and self-reliant makes it harder for them to engage with others, and especially with other men, in any but a very superficial way," the report noted.
Yet social expectations and norms do not provide the full explanation.
"There are nuances below that, such as changes in family circumstances, or financial issues, or changes in work, or people moving away from where they grew up, or middle-aged men not keeping up with sport and losing contact with that group of friends," Dr Carbone said.
Another possible factor is that it follows a period of establishing life partnerships and starting families.
"It's in that timeframe, the 30s, that we're partnering up, starting to have kids, becoming very busy with jobs, and I wonder whether it's those contextual things that contribute to that observed dip," he said.

Don't stop making an effort

Many men, for whatever reason, stop making the effort, according to Dr Carbone. But the truth is our social networks need to be nurtured and kept active.
It would be nice to have more time with friends, but everyone's busy ... I've been the instigator of catch-ups before, but it's a hassle.
Steve
Steve, a 34-year-old professional who is single and lives with his mother, admits he does not meet up with his friends as often as he would like.
Making an effort to catch up with them more frequently would be good, but after a day's work he is often tired and prefers to just go home and relax.
The beyondblue research described Steve as being closest to the average level of social connectedness for this group of men.
They have no real emotional, financial, time or health barriers, yet while they see some value in having a rich social life it's not a priority for them.
"It would be nice to have more time with friends, but everyone's busy," Steve said. "I've been the instigator of catch-ups before, but it's a hassle."

Some men lack skills to get help

Dr Elizabeth Celi, a psychologist and men's mental health specialist, said many middle-aged men "missed primary school and high school", when it came to acquiring skills in emotional openness.
"You're talking about a generation of men who weren't encouraged or raised to express themselves, if anything they were overtly and covertly given the messages you don't share your emotions or open up about your personal issues," Dr Celi said.
"By the time they're in their 20s and have gone through the early developmental phase, the generations change and socially we're in a different place where it's OK for men to do this, and we want men to do this.
"But they haven't had a chance to learn it. And then we expect them to do it in a day."
Dr Celi said society needed to be more receptive to men opening up.
"I speak to a lot of men who, when they do open up, the people in their networks dismiss it or tell them to toughen up ... that's not exactly encouraging those men to build quality friendships," she said.
But she argues it is important not to compare men's friendships with women's.
"Men do quality friendships, which means it will typically be fewer friends in their network. They don't necessarily show them outwardly to the same degree that women do," she said.

24-hour telephone counselling

Friday, 22 April 2016

For those of us who chose to grow up on, Earth Wind and Fire, The Jacksons, James Ingram, Jeffrey Osborne, The Commodores, Luther Vandross and Brothers Johnson etc…………….


Prince was our John Lennon





Well done New Yorker

Thursday, 21 April 2016

Blog update 21 April 2016

Blog update 21 April 2016


Well time for another update. Unfortunately things are deteriorating. Dealing with fluid build up means breathing becomes more difficult. Blood results haven’t been good for a while and heart likes to let me know its still there in only the special way it can lol. Unfortunately the transplant unit are playing games again and refusing to reply to email questions of a medical nature. Not only is it unprofessional I have to wonder whether it’s bordering on a criminal act. We are told from day one we can rely on certain people and we certainly need to as years go by. Unfortunately they are the first to point out your responsibilities but try to absolve themselves of any responsibility through their actions. The behaviour is disgusting and unprofessional and unfortunately leaves me with no option but to look at legal and public (media) action as soon as I am able. It is so sad that it has come to this but it is what it is.

The pain throughout my body is constant now with only little relief from the opiates. I would like to be more productive with my writing and I am doing my best but it is getting harder. I am worried I will run out of time to do the things I want to do before the end. I will not allow myself to end up in any sort of palliative care as the words “Queensland Health” and “pain relief” do not go together in my vast experience with them.

Chapter 6 of my book seems to be taking forever but it is now nearly there and will be posted shortly.

Take care all
I’ll keep battling

D xo

Thursday, 31 March 2016

Blog update 31 March 2016

Blog update 31 March 2016


Hi everyone its update time. On the good side of things my beloved Richmond Tigers beat the Carlton Blues in what has become the traditional opener to the Australian Football League season. These two teams are arch rivals with a rivalry that goes back to the 1800’s for my readers outside of Australia.

On the bad side it now looks like my relationship with the Queensland Heart Transplant Unit is now at a stage that is not repairable. For the umpteenth time I have emailed about an important subject and received no reply. We are told when we have a transplant unit that we can call or email anytime to a certain number and our transplant co-ordinator. This behaviour is completely unacceptable.

Why as a society do we place these people in medicine on a pedestal? This behaviour and the hell that I have had to endure by three doctors and a small number of nurses down through the years is disgraceful. Medicine is no different to any other profession in its prevalence of bad apples. Unfortunately the bad apples in medicine can end up killing people through their incompetence and ego. And how does the patient protect themselves while all this is happening? Well the truth is they can’t.  

Queensland Health always tell you that there are procedures you can go through to make a complaint, well I say to hell with that!

Would you let the bank robber’s friends and family work out the bank robber’s guilt and what punishment they should receive?

Of course you wouldn’t and I won’t either. That is what courts are for. And if they don’t do their job them you hand it over to the media.

My advice to anyone in a position of difficulty with people in Queensland hospitals is to start compiling evidence as it is your only protection. If it comes down to your word versus them you don’t need to be a rocket scientist to know how it will turn out. The audio recording function in most Smartphone’s these days is pretty good and volumes can be increased back on your home computer.

Remember only you can protect yourself in these situations as QH only care about protecting themselves. Time is my enemy now as my health deteriorates but I have already made key people aware of my story and damn it it will be told if for no other reason than to protect others.

Take care of yourselves

Love

D

Thursday, 10 March 2016

Blog Update 9 March 2016

Blog Update 9 March 2016


Well another fun week or so has passed and as usual I try to not let a day go by without learning something. Whenever I get my bloods done and I do this every 3 weeks or so I make sure I get a copy. I have learnt to read the results but I still get surprises when things are pointed out to me that I wouldn’t even bother to take notice of.

I had one of my many clinic appointments this week at Cairns Hospital, this time for rheumatology. When you are on the very long list of drugs that I am on the list of side effects is also crazy long. Unfortunately some of the side effects that seriously affect daily life are Gout, Tenosynavitis and Rheumatism. Enormous pain throughout the body and the deterioration of the use of my hands and general mobility that unfortunately cannot get better only worse. It really has got to the stage where I just go in for a chat with him these days because we know there is little he can do and what he can do is restricted by the use of medication for my heart and lungs. His last letter to all the stakeholders in my medical care was hilarious.

While I was in hospital in November 2015 and I had a scheduled appointment with him during that time. It was the day that Jonah Lomu had died and I didn’t know until he told me at the end of the consultation. I had intended to interview Jonah for my book as there are only 2 sportspeople that I knew of that had had solid organ transplants and continued playing at the top level. The other was Alonzo Mourning the American basketball player. He wrote a letter to all the doctors that i see which was basically along the lines of  "I am not touching this guy until you heart and lung clowns get your shit together". It was hilarious and i could just picture him throwing his hands in the air and saying "i have never seen a patient like you Darren". "For gods sake look at your medication list its huge!". Ah you have to laugh otherwise you would go mad.

Well what did I learn today? I learned that I need to start reading my haemoglobin levels. As I have found down through the years it is often a doctor whose job it is not to chase up something who ends up pointing something important out and the transplant unit who have known my levels have been extremely high let me down. The rheumatology specialist described my blood readings as being like sludge! What scared me is that I am already on large amounts of various blood thinners so goodness knows what would have happened by now if I wasn’t. Strokes and heart attacks one would think would be a certainty and given the number of the latter I have had to endure I can do without any more before they inevitably end up happening. They will probably have to start taking a pint out every fortnight. Fun.

What’s disappointing is these levels have been like this for at least a year and the transplant unit have failed to even bring the subject up. The failures just keep piling up. Time for that enquiry I keep talking about. There is no excuse. I await a decision on the next course of action. Add it to the list of many.

On the bright side chapter 6 of my book is about 2 thirds written and I will post abridged version soon. Seeya soon

Cheers
D J



Thursday, 25 February 2016

Blog Update 26 February 2016 Leading causes of Australian deaths

Blog Update 26 February 2016 

 

The Following is from the Australian Institute of Health and Welfare. The full page and info is at the following link. It makes interesting reading. It also makes you think about the things that the general public think are our biggest killers are actually wrong and therefore don’t get an appropriate amount of awareness or funding. Bottom line people are dying of things they don’t necessarily need to die from.

 

For those of us with Terminal End Stage Cardiac and pulmonary disease this is frustrating beyond words.

http://www.aihw.gov.au/deaths/leading-causes-of-death/

Leading underlying causes of death by sex

Coronary heart disease is the leading underlying cause of death in Australia, followed by dementia and Alzheimer disease, and cerebrovascular diseases (which includes stroke). Lung cancer and chronic obstructive pulmonary disease (COPD) make up the top 5 leading underlying causes of death in Australia in 2013, for males and females of all ages combined.
Figure 1 below shows the number of male and female deaths contributing to the top 5 causes. Males account for more deaths due to coronary heart disease, lung cancer and COPD. Females account for the majority of deaths due to cerebrovascular disease and dementia and Alzheimer disease. For more leading causes of death by sex see Table S1.

Figure 1: Leading underlying causes of death by sex, 2013

Image shows the number of male and female deaths contributing to the top 5 underlying causes of death (coronary heart disease, cerebrovascular diseases, dementia and alzheimer disease, lung cancer, chronic obstructive pulmonary disease-COPD).
Image shows the number of male and female deaths contributing to the top 5 underlying causes of death (coronary heart disease, cerebrovascular diseases, dementia and alzheimer disease, lung cancer, chronic obstructive pulmonary disease-COPD).




Note: Leading causes of death are based on underlying causes of death and classified using an AIHW-modified version of Becker et al. 2006. International Statistical Classification of Diseases and Related Health Problems, 10th revision (ICD-10) codes are presented in parentheses.
Source: AIHW National Mortality Database (Table S1). 

Leading underlying causes of death by age

The leading underlying causes of death are different at different ages. In general, chronic disease causes of death feature more prominently among people aged 45 years and over while the leading causes of death among 1–44 year olds are external causes such as land transport accidents and suicides.
Coronary heart disease is the most common underlying cause of death in Australia for people over age 45, followed by cerebrovascular disease, cancers, dementia and Alzheimer disease and respiratory conditions.
Suicide was the leading underlying cause of death among persons aged 15–44, and land transport accidents were the leading cause among people aged 1–14.
Land transport accidents were responsible for 14% of deaths among persons aged 1–14, and 23% of deaths among persons aged 15–24, and suicide was the underlying cause of 18% of deaths among persons age 25–44 and 28% of deaths among those aged 15–24.
Among infants, certain conditions originating in the perinatal period and congenital conditions were responsible for most deaths (76%). This was followed by sudden infant death syndrome (SIDS), accounting for 6% of infant deaths.

See more on Premature mortality in Australia. 
Figure 2: Leading underlying causes of death in Australia by age group, 2011–2013

1st
2nd
3rd
4th
5th
Age < 1
Other
Perinatal & congenital
Other
SIDS
Other
Ill–defined causes
External
Accidental threats to breathing
Other
Selected metabolic disorders
Age
1–14
External
Land transport accidents
Other
Perinatal & congenital
Cancer
Brain cancer
External
Accidental poisoning
Other
Cerebral palsy & related
Age
15–24
External
Suicide
External
Land transport accidents
External
Accidental poisoning
External
Assault
External
Event of undetermined intent
Age 
25–44
External
Suicide
External
Accidental poisoning
External
Land transport accidents
Circulatory
Coronary heart disease
Cancer
Breast cancer
Age 
45–64
Circulatory
Coronary heart disease
Cancer
Lung cancer
Cancer
Breast cancer
Cancer
Colorectal cancer
External
Suicide
Age 
65–74
Circulatory
Coronary heart disease
Cancer
Lung cancer
Respiratory
COPD
Circulatory
Cerebrovascular disease
Cancer
Colorectal cancer
Age 
75–84
Circulatory
Coronary heart disease
Circulatory
Cerebrovascular disease
Other
Dementia & Alzheimer disease
Cancer
Lung cancer
Respiratory
COPD
Age 
85–94
Circulatory
Coronary heart disease
Other
Dementia & Alzheimer disease
Circulatory
Cerebrovascular disease
Respiratory
COPD
Circulatory
Heart failure
Age 95+
Circulatory
Coronary heart disease
Other
Dementia & Alzheimer disease
Circulatory
Cerebrovascular disease
Circulatory
Heart failure
Respiratory
Influenza & pneumonia
Note: Leading causes of death are based on underlying causes of death and classified using an AIHW-modified version of Becker et al. 2006. SIDS refers to sudden infant death syndrome. COPD refers to chronic obstructive pulmonary disease.AIHW General Record of Incidence of Mortality (GRIM) books are available for selected leading causes of death.
Source: AIHW National Mortality Database (Table S2).

Classifying causes of death

Leading underlying causes of death are determined by grouping highly specific causes of death and counting the number of deaths assigned to each disease group. Over 14,000 specific causes of illness, injury and death are presented in theInternational Statistical Classification of Diseases and Related Health Problems, 10th Revision (ICD-10). These specific causes are often grouped in a way that is meaningful for public health purposes.
A common grouping is by ICD chapters which are broad categories arranged according to the type of disease, the body system affected by the disease or the circumstances causing death. Each chapter is further divided into blocks of related diseases. Australian cause of death data by ICD-10 chapters and selected causes of death are published in the AIHWGeneral Record of Incidence of Mortality (GRIM) books.
For leading underlying cause of death analysis, however, information needs to be more specific than ICD chapters and blocks. There is no standard method for grouping causes, however, the AIHW follows the recommendations of the World Health Organization (WHO) (Becker et al. 2006) with minor modifications to suit the Australian context. This grouping is a mix of ICD chapters, blocks and specific diseases to maximise information, separate out ill-defined causes and highlight health priority areas.
The leading underlying causes of death presented here are classified using the AIHW-modified version of Becker et al. 2006.