Blog update time 27 Jan 2016

Blog update time. Been a bit slack on the blog but I do find I need to be comfortable

to write and comfortable is a very very rare thing these days.

Its 2am in the morning and the humidity is crazy after some light overnight rain.

Normally we can count on it being 5 to 7 degrees cooler than the coast in summer and

an even greater gap in winter. Far North Queensland is paradise but when you are not

well the heat can knock you for six. Still living back down in Brisbane would kill me

a lot quicker.

The truth is that I moved up to the Atherton Tablelands for three reasons. The first

was  to get away from the aftermath of an abusive relationship with a truly messed up

and horrible woman. The second was that I was truly miserable in Brisbane and had

been told years beforehand by the Queensland Heart Transplant that moving to Far

North Queensland would be fine as everything I needed was up here. Unfortunately

they didn’t tell me that they were not keen for me to use any of it and would rather

that I fly to Brisbane and spend crazy amounts of money to “set their minds at ease”.

Third and finally I decided that as I consider North and Far North Queensland to be

home that this is where I wanted to spend my final days. In February 2011 I was

hospitalised while cyclone Yasi was playing silly buggers with my hometown

(Townsville) and the rest of North Queensland all the way out to Mt Isa. I was

worried sick about my mum as all I had been told was she had been transported to

Eventide in Charters Towers and that Yasi was going to hit them as still a high end

category 3 severe tropical cyclone. I had visions of a hundred year old wooden facility

being blown away with my mum in there. It wasn’t till I drove up there to get her that

I saw it was a beautiful modern facility.

There is no way known that I want to die in hospital. My experience in recent years

with certain individuals tells me that pain relief will not be a priority and the lack of

compassion that I have dealt with as far some doctors and nursing stuff are concerned

is completely unacceptable. Yes, a very small number make it tough for the vast

majority who are very good but that is small comfort when you are being subjected to

it. It should be absolutely mandatory that all medical professionals undergo a module

that focuses on listening and learning from experienced and intelligent patients who

often know more about their condition than they do even after they graduate.

The time for a “Fitzgerald” style enquiry is long overdue. Deaths that could be

avoided and so called medical professionals that care more about the furthering of

their career than the welfare of their patients is quite frankly criminal. The time has

come to fight back and that is exactly what I am in the process of doing. Compiling

evidence is a long and laborious process but it will be worth it. It will also hopefully

create a better working environment for those that do the right thing.

Incompetence has also become an issue. On a number of occasions in numerous

Hospitalisations over the last couple of years at Prince Charles Hospital, Atherton

Hospital and Cairns Hospital, doctors and nurses have actually argued

with me and got shitty because I would not take certain medications that I know I am

not allowed to take. They have had to come back later to say I was right and then

made an excuse to cover their arse and you guessed it not a single apology. Its not the

sort of behaviour that is in any way acceptable. It also makes me wonder what would

have happened if I was unconscious because its clear they weren’t reading my

medical records to find out what I couldn’t take.

All in all life is not easy these days I am supposed to be on 24 hours a day oxygen

which is not easy when you only get 3 small bottles to get around with for whne you

are away from home shopping etc. I refuse to live like hermit at home. That time will

come soon enough when my mobility cuts even more. For the moment I live in

paradise so why would I stay in the confines of my house all the time. It is tough

however when you run out of mobile oxygen halfway through the 3 month period.

Luckily I have an oxygen concentrator at home that works most of the time. The

oxygen really does make a difference.

Unfortunately the fatigue is constant and I’m starting to thing I might just bite the

bullet and pop a couple of sleeping tabs. I don’t like the things and despite being

allowed I’m not a fan of them at all. It really is a last resort. It really is hard to know

whether the fatigue is all physical through lack of meaningful sleep or maybe some

element of hopelessness.

In the past I have always fought my medical battles knowing that even when told

otherwise that there might be some hope. As long as there was an unlikely

experimental drug or the even more unlikely scenario if certain parameters were met

of a second heart transplant there was a skerrick of hope no matter how unlikely.

Unfortunately due to what was disgraceful and indeed possibly criminal advice in

2011 and a complete lack of communication from the transplant unit despite me

contacting them many times any chance of that happening has been knocked on the

head.

Am I angry? I’m angry enough to make the people that cost me that chance pay. I also

intend to make sure they can’t do it to anyone else. Unfortunately even if some

amazing treatment or drug was discovered today it would still be too late for me due

to the legal boxes that need to be ticked in countries like Australia and the USA.

People who say there there is always hope and to think positively have never known

what it is like to be at the end of life. I have been there once before in 2003 and have

been dead in 2002 so maybe that is part of the fatigue problem. Unlike most people

who end up in this situation this is not my first time so I know what’s ahead and after

13/14 years I am tired. Its easy for people to say keep fighting. Come and talk to me

when you have done nothing else but fight for that long.

And what does that even mean? How the hell do you fight any more than I already

have. Fighting in an end of life medical sense has to mean something. If there was a

thing I could do, some sort of procedure where what I actually did could help I can

assure you I would be doing it.

I am so lucky to have a GP who actually cares and doesn’t allow ego to get in the

way. When she doesn’t know something she asks and if she has to find out and I can’t

answer she finds out. She has also gone into bat for me in the past when the so called

experts have got it completely wrong and refused to do vital basic tests. I am

convinced if it wasn’t for her that I would not be here now as one of the so called

experts up here allowed arrogance and a self admitted lack of knowledge in the field

to refuse to do the most basic of non invasive heart tests straight after being admitted

for heart failure. An echocardiogram.

I have had doctors offer operations that would make a crucial difference, then tell me

that its not in the public system and that I should get friends to pitch in and pay for it!

Like we are all made of money and can afford to pay the tens of thousands of dollars

for medical procedures these days. That doctor laughed and then proceeded to walk out

of the room with a smirk on their face while I lay in bed devastated at what the jerk

said to me. Yet the laws are so skewed to protect them that if I break that doctors jaw

(goodness knows she would have deserved it) I’m the one in trouble while she gets

away with it.

I am completely disillusioned with a system that has forgotten the importance of the

patient. I am not a lump of meat that will die and no longer be a “problem”. I’m going

out swinging on my terms and god help any of these unfeeling morons who get in my

way.