blog update 2nd February 2016

The last few days in the beautiful wet tropics have just been awful. 37 degrees Celsius and 95 percent humidity and virtually no cooling rain. It seems Atherton is in a bit of a rain shadow. especially the part i live in. virtually every town and hamlet on the Atherton Tablelands got cooling rain as would be expected given where we live but we have been missing out.

Not normally something one who lives up this way would have a whinge about but it becomes a problem when almost all of the day you breath via a machine. the oxygen concentrator is blowing very hot air into my nose so the amount of oxygen is less dense and your oxygen sats are down. At night i sleep with a CPAP machine that is currently blowing hot air coupled with the oxygen into my lungs at the same time so it isn't the most comfortable situation at the moment and seems to be bringing on gout and rheumatism. Finding movement more difficult and my hands are aching and sore. Its also making me quite exhausted and slowing down my writing. With a bit of luck i'll get through the next month and the cool weather will be upon us here in the Tablelands again. 

Oxygen therapy review will be coming up at Cairns Hospital on the 18th of February. i need to get bigger bottles as i have spent the last month without oxygen when away from home. 

Hopefully I will be able to get back to writing up my sports blog. Some time ago i started a top 10 Grand Prix drivers of all time essay and i hope to finish it soon. Greatest of all time articles are extremely difficult to write due to the extreme emotion that gets attached to them so it should be interesting to see the response as my top 10 is not what people will think. 

I will also be doing one for sports cars, touring cars, indycars and american stockcar racing. this will take time as i am halfway through chapter 4 of my book so the cooler weather can't come quickly enough. 

Its funny you know being sick and in agony is something i got used to down through the years. Terminal illness does that to you but its those wonderful moments of clarity and energy that you sometimes get at 3 in the morning when its cool and you feel productive. At the moment its the exhaustion, a return of the angina and lack of those wonderful feelings of energy at the strangest hours that i miss right now. The days and weeks are passing so quickly at the moment i'm losing the ability to even plan a week ahead. 

I worry right now that i don't know what to do to feel ready to jump back on the keyboard for a days work right now. 13 years of being kicked in the guts every time you think you are bouncing back medically takes its toll. Right now i would take a pill or a drink or eat anything if it could give me just a few hours respite from this exhaustion. I don't expect anything more grandiose than that as i have accepted what is ahead of me as i have been through it once before. 

Chapter 4 should only be days away if the weather cools a bit :)

cheers

D

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.

happy new year

Well another new years eve has passed and once again I’ve proved the bastards wrong and survived. Terminal illness makes milestones mean so much more and with 16 being my lucky number (my football jumper number J ) I will be fighting as hard as I have for the past 13 years to make it to the next new years eve.

With the downturn in health and the knowledge that there is nothing that can be done it makes me more determined to extend what time is left out to as long as possible. If only it was possible to beat it but unlike cancer there are no treatments that will help so it comes down to achieving as many of my goals as possible before the end comes.

2015 was a wonderful year for achieving the things I had waited years to see and do. I know most will not understand my fascination and need to be around to see new horizons reach Pluto so you will just have to trust that it was hugely important to me.

My high school reunion meant the world to me and the support I received from Michael, Michelle and Craig meant everything and always will.

Its getting harder and harder to get comfortable to write but I will get there. From now on I will devote whatever moments I can to finishing this damn book J once I have all my evidence compiled I will also be doing my bit to hold certain so called medical professionals to account so they can’t hurt others. At least I can then leave a legacy of knowing I did my bit to weed out the bad apples in the qld health system. I truly believe that the qld health system is long over due for a fitzgerald style enquiry.

Finally as time goes on you find out who friends really are. Talk is cheap but actions say everything. Those of you that have been there over the last year or two (and you know who you are) have been amazing. The kind acts and just “being there” has meant everything to me. My productive days might be getting shorter and shorter but hey that’s life. You live with the cards you are dealt and as far as I am concerned you then beg borrow and steal your way to get better ones and that is my attitude and has been since this nightmare started in January 2002.

As I said earlier there is no “beating this” as that is medically impossible but I am a fighter and when I do go down it will be kicking and screaming and everyone will know I gave it everything.

So bring on 2016 and yes you know its coming…………..eatem alive tiges! J

lung tests

Well I guess all those mirrors I broke 13 years (no I don’t remember them either) are in fine form. What feels like a 13 year drawn out execution continues. The pain never stops and now the breathing is getting worse. Today was supposed to be d-day in terms of whether my lungs would completely write me off for an unlikely second heart transplant. Unfortunately the tests had to stop with the lung doctor deciding I am in respiratory failure (I already figured this out for myself with oxygen sats in the high 60’s and low 70’s) and want to admit me today to start working on my lungs. We compromised (well I told him actually lol) so I can have one last weekend before the medical hell I know so well resumes again with all the slicing and dicing they love doing to me.

At least he is taking my request for oxygen seriously now. Looks like they may airlift me to prince charles in brissy next week. Just what I need more stress and arguments with people I will more than likely be suing soon. I will get back to writing my book as soon as I can as unfortunately time is running out.  

Life’s a bitch then you …………..

Chapter 5 (abridged) A Year Terminal

Chapter 5 (abridged)

A Year Terminal

2002/2003 was the year from hell, yet as with so many of the bad things that have been outlined in this book there were also moments of positivity that I can never forget.

One of the strange effects of being “dead” for twenty minutes was that the brain damage caused from lack of oxygen manifested itself in some strange ways that are still making themselves known to me to this current day. For the first three months my right arm and shoulder were paralysed and would simply hang at my side. However when something substantial was placed in my hand such as a ball my arm would come to “life” and work. At the time it was a mystery to both my physio who just plain called me weird and the clinical neuropsychologist who couldn’t figure it out.

I later found out that whilst the brain does not repair damaged tissue it does have the ability to find other “pathways” to get the message out to other parts of the body. In my case to simply move my arm. After 3 months I regained movement in my arm with out having to have something in my hand.

Unfortunately as I indicated earlier there were and are other effects from hypoxic brain injury. For the first few years my well known ability to pull statistics out of the air whether they are movie box offices, music chart performances or sporting results was virtually left untouched. As the years have passed my ability to access these things has grown slower and slower to the point where I started to notice it was affecting my performance as an on-air anchor and analyst on my beloved sports radio show.

I also found out pretty much immediately during my recovery that I had what was simply called a “tracking” problem. Put simply if I am in a conversation sometimes if I stray too far away from the point I was trying to make I will not be able to get back “on point” as I cannot remember where I was in the conversation. The bad thing about this is I will often realise this is occurring while I am talking and know that I cannot dig myself out of that situation. As you might imagine this is absolutely terrifying if I am on the air and in the middle of an interview. Luckily it has only happened a couple of times on-air and I managed to hide it well. More on that later.

I spent the first two months of my recovery in Townsville at my mother’s place waiting for the go ahead to drive again.

My employer in Brisbane for want of  a better phrase pretty much abandoned me. The boss didn't bother to keep in touch and my company car was taken from me as soon as i arrived back in Brisbane after i flew in. a person's quality of character is most at test when times are bad. unfortunately to this day i am yet to receive a call to see how i am going. 

I was able to get home to Brisbane just in time to see my beloved Springwood Football Club make the grand final in both grades. We won both premierships in 2002 and after having been manager of those teams for a number of years and held committee positions and the vice-presidency of the club it meant everything to see the boys have a great year.

That day was also a day I will never forget due to the actions of an exceptional young man by the name of Mitchell Cameron. The Springwood Football Club reserves had won the Grand Final. The final siren had just sounded and the boys were in ecstasy celebrating a great win. As they started to make their way over to our supporters, some of the players led by Mitchell came over towards where I was sitting. I had been sitting next to Mitchell’s mother Linda and my dear friend Stewart Manning’s wife Kelly.

Bear in mind at this stage I wasn’t doing so well. Despite the weather that day being fine and a little warm in the sun I was rugged up like it was a winter’s day. My skin was grey and cold due to lack of heart function and circulation. To say I looked like “death” that day was an understatement and the truth was I wasn’t well but I didn’t want to miss the boys playing in a grand final. There was a realistic probability it would be my last.  

Mitchell and the boys ran over and jumped the fence. Naturally I thought he was coming to celebrate with his mother but to my surprise he stopped in front of me and grabbed my face. He looked into my eyes and said “we did it for you yogi!” Yogi was a nickname given to me by Neville Shaw and Andy Colenso who were both ex Collingwood Football Club players who had become involved with Springwood a few years earlier. Never had the nickname meant more to me than at that moment as Mitchell hugged out the little breath I had in my lungs at the time. For the first time since Rosa the nurse at Townsville General Hospital said those perfect words to me while I was having my second major heart attack I completely broke down in tears.

I looked at his mother with tears streaming down my face and all I could say was “he’s a good boy Linda he’s a good boy”.

After the heart attacks I was in a period of medical limbo through the rest of 2002. For some inexplicable reason that baffled my GP and pretty much every medical professional that I spoke to at the time my file seemed to have been put on the backburner at Logan Hospital, a hospital with a rightfully at the time poor reputation  between Brisbane and the Gold Coast.

What could not be understood was why someone as young as me with two major heart attacks in my history and a heart function that was steadily heading down hill did not seem to have major red flags all over my files. I later found out that after a couple of months of procrastination that the doctors involved simply had no idea, got scared and finally wrote a letter to the Queensland Heart Failure Unit at The Prince Charles Hospital in Brisbane. Needless to say this should have been done from day one.

With my health fading I was finally asked to come into the Queensland Heart Failure and Transplant Unit. From the moment I arrived I new there was something very different about this place compared to other hospitals. After the genuine fear that I felt at having to deal with Logan Hospital and their procrastination over my case The Prince Charles Hospital in Brisbane was a revelation. There were minimal waits for outpatients’ appointments, staff were fully accessible to answer questions and a general feeling of safety and comfort existed that I had never experienced in a public hospital before. Unfortunately at the time of writing (May 2015) I no longer necessarily feel this way.

November 2002 was a very different time however and under the leadership of Dr Andrew Galbraith the Heart Failure and Transplant Unit always felt like a safe place to be even with the occasional hiccup when certain medical professionals would have an extreme attack of arrogance and ego.

From the moment I was admitted both Dr Andrew Galbraith and Dr Deborah Meyers could see I was in big trouble.

After a number of tests it was decided to have an angiogram. As it was a standard cardiac procedure involving the placement of a cardiac catheter into the right Femoral artery and I already had two stents placed in my blocked arteries from the initial heart attacks I wasn’t worried. It is a routine procedure after all done under local anaesthetic.   

I had the procedure a couple of days before Christmas and was told I could go home for Christmas but would need to come back on New Years Eve for more tests and procedures. At this stage I had had a Super Ventricular Tachycardia attack during a procedure and peaked at 263 beats per minute before the defibrillator zapped me back into rhythm. My pulmonary blood pressure was also high which meant we were looking at a probable heart and double lung transplant. An easier operation for the surgeon to perform than a straight heart transplant but also with a 20 percent higher mortality rate for the patient. Let’s face it a heart and both your lungs is a big chunk of your body to go pulling out and replacing. Thankfully my pulmonary pressures came down enough over the next few months for me to just scrape in for a heart transplant.   

But I digress, as it turns out the Angiogram that I had around Christmas 2002 did not heal. Turns out my right femoral artery was slowly bleeding and my right inner thigh was turning black over a period of a few days. If it wasn’t fixed immediately I would lose my right leg. My right leg had copped an awful lot that year.

I was placed in the hands of Dr Richard Slaughter and yes that really is his name. The hospital had just got its hands on a new full colour ultrasound machine that I was told was full of bells and whistles. Whatever that meant. It was decided to try something different. Rather than put me under the knife again and have vascular surgery on the artery it was decided to try a different procedure.

I would in a reclining position under local anaesthetic have a blood clotting fluid injected next to the opening in the artery. The syringe would be guided deep into my leg with this new ultrasound machine. As I sat there prone for all the students standing around to see we all had our fingers crossed that this would work. After the procedure we had to wait until the next morning for a scan to show that the bleeding had stopped. Thank goodness it worked and it was a hell of a way to bring in new year 2003.

2003 was to be the most eventful year of all as it was the year I received the transplant.

In January not long after going home from hospital I was staying at my friend Stewart’s house in Brisbane and started to get some chest pain. I took my letter of medical stuff explaining everything including medications to him as he was doing stuff in another room. I explained it was just in case as I was in a little pain. I went back out to watch some television. David Gilmour in concert was playing on the TV. I always thought Pink Floyd was supposed to be relaxing but it didn’t help this time. I calmly picked up the phone and called the ambulance. As they arrived Stew came out of his room with one of those WTF! Looks on his face. One of the ambos took a look at my letter and said “you’re special aren’t you”. She then asked if she could get a copy for a case study she was doing. It wasn’t the last time I would be asked this.

So off to hospital I went. Yep you guessed it Logan Hospital. This time I met a good young doctor. Lets call him Anton. Anton decided to take an interest in my case and spent quite a bit more time with me than what I have experienced in my many frequents trips to accident and emergency. Anton ordered all the usual tests including troponin levels which usually indicate heart attack or not. Turns out I was having a third heart attack this one minor. After going through my history he came back and we had a wonderfully frank conversation where he basically confirmed I was cactus and would need at least a heart transplant. This was something that his superiors could not figure out. I also found out later on in the year that the cardiac doctors were talking heart transplant as early as just after the initial heart attacks in Townsville.

Unfortunately the procrastination and refusal at Logan Hospital to make a decision and contact the heart failure unit at Prince Charles Hospital in Brisbane could have been fatal. Every medical professional I spoke to at the time was mystified at the lack of decision making. Thank goodness there are good doctors out there that actually care. Young Anton was one of them.

Thankfully I was transported to Prince Charles Hospital and after a heap of tests almost all involving some form of being cut open plus the usual bucket of blood it was decided to put me on the heart transplant waiting list as my pulmonary blood pressures had reduced enough for me not to need a set of lungs as well.

So I eventually went home and spent the next few months fading away with many visits to hospital to get things back in balance while my body was slowly dying. A number of the drugs were knocking me around terribly and I managed to somehow get every side effect imaginable. The ones I hated the most were the ones that sent my blood pressure through the floor. Wanting to faint 5 minutes after you take a drug is no fun. It’s even less fun when you try to convince a young arrogant fool masquerading as a doctor to stop insisting you take it when there are other drugs that can be used as an alternative.

A few weeks before my heart transplant I was seriously fading. The hospital trips became more frequent to “tune me up” and it was obvious the end was getting closer. My skin was getting greyer and I was now looking at “organising my affairs”.

One Saturday morning after coming off the air I was feeling even worse than normal as I was carrying an awful lot of fluid. I rang the hospital from the radio station car park and was advised to take a higher dosage of Frusemide which is a commonly used diuretic or “fluid tablet” in cardiac medicine.  By Monday morning I was feeling odd. I was scheduled to go into Prince Charles hospital for a heart failure clinic appointment that morning anyway.

I drove down the Gateway motorway in Brisbane which is the main freeway in that city bypassing a lot of the urban sprawl to the west to connect with the Gold Coast.

I started to get very bright vision almost to the point of being snow-blind so I pulled over had some sprays of my nitrolingual spray to ease my angina pain which by this stage was a many times daily affair and took a few minutes to settle down. I was about to call an ambulance but thank goodness I settled down and got rolling again towards the hospital. A good thing too as I have no idea what would have happened to my car anyway.

I finally arrived at Prince Charles Hospital  and started to make my way through “breezes” the hospital’s café. At the front door were a number of nurses I had come to know quite well. They were manning a stall checking peoples blood pressure for a heart health promotion. They took one look at me and told me to sit down. They immediately called for a wheelchair and were on the phone to the heart failure unit. It was decided to take me straight to clinic and they could assess me there. I was fading rapidly.

They asked me to stand up to check my weight but I couldn’t, I was stuck. There was little pain, just my legs refusing to do what my brain was telling them to do. The truth was I was dying right in front of their eyes.

My kidneys had decided to completely stop working and I was fading away by the minute. Rather than carry on with the clinic they tried to get blood out of me so I was wheeled to the vampires room. By this stage I was in real trouble. There was little pain just a worsening feeling of being ill. I was writhing in the chair at this stage as I had dried right out. My kidneys were in total failure and I just asked the blood collector to punch me in the jaw. Just hit me hard in the jaw and knock me out I said. It was the worst feeling I had ever felt. I can deal with agonising pain it comes with the territory but this was different. I was literally dying in front of them and they had to do something.

I was rushed upstairs to the ward and they managed to get an I.V. drip into me and pumped a heap of saline into me as fast as they could. Luckily this process got everything kick started again thank goodness and a couple of hours later after being rehydrated everything was working again. Wasn’t relishing the thought of dialysis on top of everything else I was going through.

Later that night my American cardiologist Deborah Meyers came in to see how I was doing. Now to say Deborah was a lovely sight for sore eyes was an understatement. She wasn’t hard to look at at all. I was half asleep when I felt gentle hands slowly rubbing over my stomach and chest. Needless to say I awoke with a smile on my face as she pinched the skin on the back of hand as well. Turned out this was a perfectly normal medical test to see how dry my skin still was. She was trying to see if I was fully hydrated back to normal. Ah well the silly dreams of the sick and infirmed.

Jokes aside this huge incident was an obvious example that the end was near as my organs started to find it harder and harder to do their jobs. I was dying at a more rapid rate and if a donor heart wasn’t fount soon it was all over.

There were other incidents and a couple of false alarms over the coming weeks and then one night in June the call came. I cannot put the date in this book due to anonymity laws here in Queensland, Australia and this is made worse by my on air public profile. 

Every one of my plans for a lift to the hospital fell through that night. It was uncanny so I jumped in the car and bolted to the Prince Charles Hospital observing the speed limit of course (wink). Adrenaline somehow allowed me to lift a heavy bag out of my car and almost run into accident and emergency only to find that everyone that I wanted to be there plus one I didn’t had turned up. A lot of words were spoken and tears were shed while I was being prepped for surgery. There was bright red blood everywhere as my wrists were tapped like kegs only somebody forgot to let the local anaesthetic work first. I was like the Texas Chainsaw Massacre only it was real blood and boy did it contrast on the perfectly white sheets.

At this point I asked everyone to leave the room so I could talk to my friend Stewart. I could see the look on his face was one of fear. Was this the last time we would talk. The probability was high. I gave him my will and told him a couple of things I wanted organised if I didn’t make it as well as delivery of a letter to my ex fiancé the contents of which aren’t important now.

I told him that I loved him like the brother I never had, we hugged and called the nurses back in.

The moment had arrived…………………..

to those who have made the effort to read the blog i thank you

to those who have made the effort to read the blog i thank you. i can see that through your likes and comments. to those who haven't i guess it goes to proving the point i made in my most recent blog entry. even my wonderful doctor has read it and sent me a letter telling me what she thought which was huge for me. to finally get some validation from the medical community is a big deal for me. she noted my case was unique and maybe people can't get their head around it because i unfortunately can speak from both both sides of the fence on terminal disease.

my body has had to deal with so much and i have spent so many years downplaying it that people don't understand the cancer references. when you spend as much time as i have in chemotherapy units you understand what is happening because you are often going through the same side effects, using the same machines in a lot of cases, and in my case dealing with a lot more in terms of invasive procedures and operations. almost everything involves getting cut open or dealing with toxic drugs that do horrific things to many regions of the body. you put up with it because the alternative is to die quicker than you are already going to.

i see myself having three choices:

1. ditch social media totally. this is a bad idea given i have spent the last 2 decades as an on-air presenter and producer and with my final projects still to come this would be dumb from an economic point of view.

2. i could do what i currently do. talk about it once or twice a year and generally achieve bugger all in a cause that i believe has been ignored by successive governments.

or 3. break relatively self imposed silence down through the years and start to chronicle everything as my health progressively starts to fail so people can see the reality of terminal illness outside of cancers.

whilst it goes against my natural instincts i am starting to err on the side of choice number 3. the question is how to do it in a way that doesn't bore people shitless as it is too important. some people have tried to convince me to be silent and be dignified in dying. i do not subscribe to that at all especially as i have been clinically dead 3 times including once for 20 minutes. death is not a dignified thing. it is painful, messy and the only way it can be dignified is for the people left behind to make them feel better.

those who know me and even those reading this that do not, will see that when i write or speak publicly i do so honestly and pragmatically. sugar coating reality helps no-one. i do not believe in god and i believe we create our own legacies. i want mine to be a medical profession that deals with this in a better way and that starts with listening to the patient.

i have known death in my own body as well as losing the most important people in my life. the saying about when times are tough you find out who your real friends are is true. this is not necessarily a negative thing. after all who needs people around who genuinely don't wish to be there.

i will continue the blog as it a good tool to preview the book i am writing however i think it will also be a good vehicle to chronicle and educate everyone on an area of medicine that people genuinely don't understand.

i have so much more to say and for the first time in ages i feel it flowing as soon as i get near a keyboard. this is a good thing as i also have a backlog of sports stories and top 10's that i want to get to asap. i will decide where i put those things shortly as i do wish to have too many things out there as it gets messy. a good friend of mine the former manager at 4BC and ABC Gold Coast, Anthony Frangi once said to me keep writing, just keep writing.

he was correct :)

http://darrenmadigan.blogspot.com.au/

Life is full of milestones

Life is full of milestones and just last Saturday (3/10/2015) I celebrated the 30 year anniversary of my high school graduation. The class of 1985 of Townsville State High School was a special one with so many of us still in touch thanks to the wonders of social media.

It was a long and stressful exercise in the organising mainly due to trying to finalise numbers and get funds in the bank as soon as possible. Unfortunately that lasted right up until the final day which made life a little difficult to organise some of the other little goodies that I had hoped to organise for everyone to take home.

The night itself was wonderful with everyone having a great time just catching up and waxing lyrical about old times and what they had been up to since. Remembering crushes from the school days and maybe even crushes that have developed since, a great time was had by all.

The night took even more importance to me personally as the day grew closer and the realisation that I would never see some of these people again due to my medical situation. Being terminally ill is no fun and needless to say it’s only when people can actually see the changes do they actually show real concern.

I had hoped not to use my wheelchair but as the pain started to increase as the night went on I really didn’t have a choice especially as we were getting ready to head down the road to the casino for a few quiet end of night drinks. I was very lucky that my good friend Michael wheeled me down there, especially the uphill bits lol. I also want to thank a great friend down in Brisbane without whose kind act and help I most likely wouldn’t have been in a position to attend the very event I helped organise. Thank you so much C.

The night ended emotionally with me realising that the 2 people I was left with had given me the opportunity to open up about a lot of things I had never really talked about before in as much detail as I did. One I had never really been friends with at school but by the end of the night I felt I had known her my whole life and the other ……..well she was my first real love and I am in the very lucky position all these years later to be very close friends with her. There are some things in this world that nobody no matter how nasty or spiteful can take away.

November 12 sees me undergo a series of lung tests to see whether my pulmonary hypertension is back. If it is I have been told that no matter what I try to do to pull off a medical miracle and somehow become a candidate for a second heart transplant, I will have an automatic no to the possibility of that happening.

It is truly frustrating and heartbreaking to have to explain myself and my medical situation all the time. People jump to conclusions and can’t seem to get their head around the fact that there are worse things to live with and die from than cancer. It seems that the only way that people will take your situation seriously is if you have some form of cancer. Even when people have perfectly treatable types of cancer and if their treatment works they can enter long periods of remission or even what amounts to a cure, they still don’t understand that terminal heart disease is exactly that. There are no stories of being told 25 years ago that you have six months to live with a form of cancer and are now still alive. No siree, terminal heart disease especially on your second heart is exactly that. Terminal.

The other thing that most do not have a clue about is the constant treatments and operations and procedures that someone in my condition has to endure. Cancer patients talk about chemo as if it is the single most awful thing one can endure. It is not. I have spent a lot of time in the chemo therapy unit at the hospital that I have virtually lived at since 2002. This is due to the fact that when you need antiviral treatment and other cytotoxic drug infusions as an outpatient it is the best place to be. IV protocols and general comfort are much better than in other places in the hospital.

One tends to spend a lot of time sitting and talking to other patients swapping war stories over long periods of time. These are the sorts of stories and the lengths of time that medical professionals simply don’t get to be a part of as they have many patients in the course of a day and there isn’t time. The things we talk about are things that only we can understand and appreciate and we even start to have our own lingo that only we really understand. Suffice to say that when I have gone through what I have had to endure over the years and we have swapped the war stories they tend to have a newfound respect for me and people who have been through what I have been through. Especially when they realise almost every treatment involves being opened up or penetrated with something very sharp.

Western society is now conditioned to thinking that there is nothing worse than a form of cancer and once the word is said there is a collective hush and the worst is immediately thought. With terminal heart disease the reaction seems to be the opposite. The first thing people think and say is that medicine is amazing these days and those doctors will be able to fix it. During one of the countless interviews I have granted on the subject down through the years I even had one of my own colleagues at the ABC say to me “but its not like terminal cancer is it. You’re not going to die?”. Needless to say I was absolutely gobsmacked. You see the single most important criteria for needing a heart transplant is that you are going to die and you are indeed terminal! So frustrating.  

I have refrained down through the years of constantly putting posts on social media looking for attention under the guise of “raising awareness”. The truth is there are only a small number of awareness campaigns that have truly made any real difference. Campaigns such as HIV/AIDS, breast cancer awareness and domestic violence have done an amazing job of getting people on board even when the message isn’t entirely factual. In most cases awareness campaigns tend to be more beneficial to those conducting them. These campaigns tend to be far more beneficial in making the organisers feel better, whether it actually helps the people who have the disease or not.

So often people will say they are praying for you or “I will say a special prayer for you” genuinely believing that they are doing something special. The truth is they are not. What would do some good would be to stop looking to the sky and asking their unicorn for help and maybe do something substantial like give us a hand getting the lawn mowed so the landlord doesn’t kick me out of the only bit of stability I have. A roof over my head.

Its amazing how many people I helped when my life was going nicely and theirs was not. Whether it was financial or just being there when they needed me to give advice or actual physically helping them get out of a situation they didn’t want to be in anymore I was always there when needed. Now that they have moved on with their lives and mine has through no fault of my own medically gone to shit, they are nowhere to be seen.

Its fascinating that people that were friends since childhood, you know the ones that say we will be there for each other for life no matter what lol. Yeah you know the ones lol. Well they aren’t there and never have been throughout an ordeal that I wouldn’t wish on my worst enemy. Interesting however that people you may not have had anything to do with in decades or may have only known for a relatively short time in the big scheme of things turned out to be absolute rocks in your life and you can’t imagine even still being alive with out them. I guess that epitomises that very irritating saying “the journey of life”

During 2002/2003 it became very apparent who was there and who wasn’t. It was also obvious that certain people had to be removed from my life. This included family members. The simple bottom line was keep them in my life and have such enormous added stress that I would not have survived or remove them and have a genuine chance of fighting for my own life with me making my own decisions without people trying to but in who knew nothing of what I was really facing. It was the right decision at the right time.

I find myself at the same point again. Its time to remove those who can’t be bothered despite me having helped them down through the years. I choose to live in paradise because it is all I have left and the thought of living in the big city again and being miserable means that being there all the time isn’t an option. But just because I don’t live down there anymore does that mean I just get cut out of people’s lives? Especially at a time of life when I have never needed them more? No to hell with it. The friends that currently keep in touch and check on my welfare be it by phone, in person or on line understand what I have been through because they are there to tell.

To the others who can’t be bothered…….well you’ll have plenty of time to think about how little you cared when I am no longer here.

To those who do make the effort I love you to bits. Even the blokes lol J